Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

PubMed

Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

2015-08-01

Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

PubMed

Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

2016-02-01

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

PubMed Central

Wu, Monica S.; Hamblin, Rebecca; Nadeau, Joshua; Simmons, Jessica; Smith, Ashley; Wilson, Meredith; Eken, Stephanie; Small, Brent; Phares, Vicky; Storch, Eric A.

2018-01-01

Background Pediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program. Method The relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires. Results Components of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL. Conclusion Ultimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions. PMID:29031217

Mental health and well-being among type 1 diabetes caregivers in India: Evidence from the IDREAM study.

PubMed

Capistrant, Benjamin D; Friedemann-Sánchez, Greta; Novak, Lindsey K; Zuijdwijk, Caroline; Ogle, Graham D; Pendsey, Sharad

2017-12-01

Although more than half of the world's children with T1D live in developing countries, still little is known about how caregiving for children with T1D affects the parent/caregivers' health in low- and middle-income country settings. Caregivers of 178 children with T1D from a specialized diabetes clinic in Maharashtra, India were surveyed. Ordered and standard logistic regression models adjusted for caregiver, household and child characteristics, were fit to estimate the association of caregiving burden (objective caregiving burden and subjective caregiving burden (Zarit Burden Inventory - tertiles)) with caregiver depression (Patient Health Questionnaire [PHQ-9]) and well-being (CDC Unhealthy Days) outcomes. Caregivers with high subjective caregiving burden had a 41% probability of most severe depression category (probability: 0.41, 95% CI: 0.25, 0.57) and an 39% probability of low well-being (probability: 0.39, 95% CI: 0.27, 0.51), compared to caregivers with low subjective burden. Caregivers with high subjective caregiving burden and high objective direct caregiving burden had an adjusted 30% probability of elevated depressive symptoms (PHQ≥10). Among Indian T1D caregivers, high subjective caregiving burden and objective direct caregiving burden were associated with a high risk for caregiver depression and poorer well-being. Copyright © 2017 Elsevier B.V. All rights reserved.

Purpose in Life Among Family Care Partners Managing Dementia: Links to Caregiving Gains.

PubMed

Polenick, Courtney A; Sherman, Carey Wexler; Birditt, Kira S; Zarit, Steven H; Kales, Helen C

2018-06-04

Purpose in life is associated with better health and has been found to minimize caregiving stress. Greater purpose may also promote caregiving gains (i.e., rewards or uplifts from providing care), yet the implications of purpose for positive aspects of the care role are largely unknown. The present study determined how perceptions of purpose in life among persons with dementia (PWDs) and their family caregivers are linked to caregiving gains. This cross-sectional study examined 153 co-resident family caregivers drawn from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate associations between caregivers' and PWDs' reports of their own purpose in life and caregivers' perceived caregiving gains, along with whether these associations vary by caregiver gender. Models controlled for caregivers' sociodemographic characteristics, relationship to the PWD, care tasks, role overload, negative caregiving relationship quality, and both care partners' chronic health conditions. Caregivers' higher purpose in life was significantly linked to greater caregiving gains. Beyond this association, PWDs' higher purpose in life was significantly associated with greater caregiving gains for women but not for men. Purpose in life is a psychological resource that contributes to positive caregiving outcomes. Interventions to improve caregiver well-being could benefit from strategies that strengthen and maintain feelings of purpose among caregivers and PWDs.

Quality of life in caregivers providing care for lung transplant candidates.

PubMed

Lefaiver, Cheryl A; Keough, Vicki A; Letizia, Marijo; Lanuza, Dorothy M

2009-06-01

Caregivers are essential members of the health care team who provide care, valued at more than $250 billion each year, to millions of persons who require assistance with health and daily care. Patients with respiratory diseases who are waiting for a lung transplant are required to have an identified caregiver. The caregivers are rarely studied. To explore the relationships among the health status of caregivers of lung transplant candidates, caregivers' reaction to caregiving, and caregivers' perceived quality of life. This descriptive study examined the quality of life of lung transplant caregivers from a multidimensional perspective. Twenty-nine dyads of lung transplant candidates and their caregivers were recruited from a Midwestern medical center. Data were collected by self-report: caregivers completed the Quality of Life Index, SF-12 health survey, Profile of Mood States-Short Form, and the Caregiver Reaction Assessment. Caregivers reported favorable levels of quality of life, physical health, and mood during the pretransplant waiting phase. However, problem areas for caregivers during this time included fatigue, depression, and the financial impact of the transplant. Data analyses indicated that depression, caregiver general health, impact on finances, and lack of family support had the greatest effect on caregivers' quality of life. Nurses are urged to recognize the role of caregivers in the transplant process, ask about and listen to caregivers' needs, and include caregivers in the plan of care.

Family caregiver communication in oncology: advancing a typology.

PubMed

Goldsmith, Joy; Wittenberg, Elaine; Platt, Christine Small; Iannarino, Nicholas T; Reno, Jenna

2016-04-01

The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers. Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized. A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure. Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type. Copyright © 2015 John Wiley & Sons, Ltd.

Benefit finding for Chinese family caregivers of community-dwelling stroke survivors: A cross-sectional study.

PubMed

Mei, Yongxia; Wilson, Susan; Lin, Beilei; Li, Yingshuang; Zhang, Zhenxiang

2018-04-01

To identify whether benefit finding is a mediator or moderator in the relationship between caregiver burden and psychological well-being (anxiety and depression) in Chinese family caregivers of community-dwelling stroke survivors. Family caregivers not only bear a heavy burden, a high level of anxiety and depression, but also experience benefit finding (positive effects result from stressful events). However, the relationships among benefit finding, caregiver burden and psychological well-being in Chinese family caregivers are not well known. This study was a cross-sectional correlational design. Caregivers (n = 145) of stroke survivors were recruited from two communities in Zhengzhou, China. Data were collected by face-to-face interviews with structured questionnaires, examining caregiver burden, benefit finding and psychological well-being of caregivers. A hierarchical regression analysis explored whether caregiver burden and benefit finding were associated with anxiety and depression of caregivers. The moderator role of benefit finding was examined by testing the significance of the interaction between caregiver burden and benefit finding. A mediational model was used to test benefit finding as a mediator between caregiver burden and psychological well-being of caregivers using process in spss 21.0. Caregiver burden and benefit finding were significantly associated with both anxiety and depression of caregivers. Benefit finding did not portray a moderating role, but portrayed the mediator role in the relationship between caregiver burden, anxiety and depression in caregivers. This study provides the preliminary evidence to nurses that intervention focus on benefit finding may help improve the psychological well-being of caregivers. This study offers nurses rational for assessing caregiver's negative emotions and benefit finding. By targeting benefit finding, the nurse may guide caregivers in benefit identification and implement interventions to reduce anxiety, depression and caregiver burden. © 2017 John Wiley & Sons Ltd.

Validation of a model of family caregiver communication types and related caregiver outcomes.

PubMed

Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

2017-02-01

Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.

"I Do the Best I Can": Caregivers' Perceptions of Informal Caregiving for Older Adults in Belize

ERIC Educational Resources Information Center

Vroman, Kerryellen; Morency, Jamme

2011-01-01

In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were "the experiences of caregivers, the rewards of caregiving, and…

Utility of the Life Course Perspective in Research With Mexican American Caregivers of Older Adults

PubMed Central

Evans, Bronwynne C.; Crogan, Neva; FNGNA; Belyea, Michael; Coon, David

2013-01-01

Research on caregiving of elders in Mexican American families is urgently needed. We know little about family caregivers, family transitions in relation to the caregiving role, reciprocal impact of caregivers and care recipients on one another, adaptive strategies, positive benefits of caregiving (caregiver gain), specific caregiving burdens, or supportive interventions for family caregiving. Theory derivation using the concepts and structure of life course perspective provides a way to fill the knowledge gaps concerning Mexican American caregiving families, taking into account their ethnic status as an important Hispanic subgroup and the unique cultural and contextual factors that mark their caregiving experiences. PMID:18845694

Measuring the Caregiver Burden of Caring for Community-Residing People with Alzheimer’s Disease

PubMed Central

Yu, Hongmei; Wang, Xiaocheng; He, Runlian; Liang, Ruifeng; Zhou, Liye

2015-01-01

Objectives To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer’s disease (AD). Methods We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients’ Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers’ level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors. Results A lower level of cognitive function in patients (r = −0.28, p<0.001) and longer hours of caregiving (r = 0.17, p = 0.019) were related to increased caregiver burden. Greater social support (r = −0.23, p<0.001), family function (r = −0.17, p = 0.015) and caregiving experience (r = −0.16, p = 0.012) were related to decreased caregiver burden. Social support (r = 0.16, p = 0.040) and family function (r = 0.25, p = 0.002) were directly related to patients’ level of cognitive functioning, but were mediator factors between level of cognitive function in patients and caregiver burden. Similarly, social support was a mediator factor between patients' daily function (r = −0.23, p = 0.004) and caregiver burden; while caregiving experience mediated the link between behavioral and psychological symptoms in patients (r = 0.36, p<0.001) and caregiver burden. Conclusion Level of cognitive function and hours of caregiving were directly related to caregiver's burden. Social support, family function and caregiving experience could mediate the relationship between patient factors and caregiver burden. Focusing on patient factors and promoting caregiver care will be helpful in lowering the perceived burden of caregiving. PMID:26154626

Differential impacts of care-giving across three caregiver groups in Canada: end-of-life care, long-term care and short-term care

PubMed Central

Williams, Allison M; Wang, Li; Kitchen, Peter

2014-01-01

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care-giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end-of-life (EOL) care (n = 471); (ii) those providing long-term care (more than 2 years) for someone with a chronic condition or long-term illness (n = 2722); and (iii) those providing short-term care (less than 2 years) for someone with a chronic condition or long-term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care-giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self-assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care-giving, more so than both short-term and long-term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care-giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long-term or short-term caregivers. This provides the evidence for the assertion that EOL care-giving is the most intense type of care-giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short-term and long-term caregivers. PMID:24172162

Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China.

PubMed

Liu, Shuai; Li, Chonghui; Shi, Zhihong; Wang, Xiaodan; Zhou, Yuying; Liu, Shuling; Liu, Jing; Yu, Tao; Ji, Yong

2017-05-01

To evaluate caregiver burden and factors that influence this burden among caregivers and patients with Alzheimer's disease in China. Long-term care can reduce the quality of life for caregivers and result in both mental and physical exhaustion. However, little is known about caregiver burden and associated factors in China. The study had a quantitative cross-sectional design. A total of 309 caregivers and their patients were included in the study. The patients' cognitive, psychological and functional status and their caregivers' burden, sleep quality and mental state were evaluated. Descriptive analyses, single-factor regression and stepwise factor regression were used to determine the effects of various factors on caregiver burden. Older females and spouses still play an important role in providing family care for those with dementia. Most of the caregivers were the sole full-time caregiver and had little time for themselves. Sleepiness was a common physical problem for caregivers, and some of them had moderate to severe depression and anxiety. A lower functional status of the patient was associated with higher caregiver burden. Poorer physical status compared with before caregiving began, lower life satisfaction, and higher degrees of depression and anxiety were associated with higher caregiver burden. Depression, anxiety and sleep problems are the main challenges that are faced by family caregivers of patients with Alzheimer's disease. Caregivers' functional status, lower life satisfaction, depression and anxiety influenced caregiver burden. Caregiver burden was related to the severity of the patient's dementia and the personal factors of the caregivers. To provide information about caregivers' current status while caring for patients with Alzheimer's disease and to understand caregiver burden and its related factors. Professionals who work with Alzheimer's disease should pay more attention to caregiver burden, especially those with mental and physical problems. © 2016 John Wiley & Sons Ltd.

Psychological well-being over time among informal caregivers caring for persons with dementia living at home.

PubMed

Lethin, Connie; Renom-Guiteras, Anna; Zwakhalen, Sandra; Soto-Martin, Maria; Saks, Kai; Zabalegui, Adelaida; Challis, David J; Nilsson, Christer; Karlsson, Staffan

2017-11-01

To investigate informal caregivers' psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors. A cohort study at baseline and 3 months' follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed. Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers' increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers' psychological well-being. Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers' psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers' psychological well-being, and provide proper care and treatment for caregivers and PwDs.

Trajectories of caregiver burden in families of adult cystic fibrosis patients.

PubMed

Wojtaszczyk, Ann; Glajchen, Myra; Portenoy, Russell K; Berdella, Maria; Walker, Patricia; Barrett, Malcolm; Chen, Jack; Plachta, Amy; Balzano, Julie; Fresenius, Ashley; Wilder, Kenya; Langfelder-Schwind, Elinor; Dhingra, Lara

2017-10-17

Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Psychosocial factors of caregiver burden in child caregivers: results from the new national study of caregiving.

PubMed

Cohen, Steven A; Cook, Sarah; Kelley, Lauren; Sando, Trisha; Bell, Allison E

2015-08-07

Over 50 million informal caregivers in the United States provide care to an aging adult, saving the economy hundreds of billions of dollars annually from costly hospitalization or institutionalization. Despite the benefits associated with caregiving, caregiver stress can lead to negative physical and mental health consequences, or "caregiver burden". Given these potential negative consequences of caregiver burden, it is important not only to understand the multidimensional components of burden but to also understand the experience from the perspective of the caregiver themselves. Therefore, the objectives of our study are to use exploratory factor analysis to obtain a set of latent factors among a subset of caregiver burden questions identified in previous studies and assess their reliability. All data was obtained from the 2011 National Study of Caregiving (NSOC). Exploratory factor analysis (EFA) was performed to identify a set of latent factors assessing four domains of caregiver burden in "child caregivers": those informal caregivers who provide care to a parent or stepparent. Sensitivity analysis was also conducted by repeating the EFA on demographic subsets of caregivers. After multiple factor analyses, four consistent caregiver burden factors emerged from the 23 questions analyzed: Negative emotional, positive emotional, social, and financial. Reliability of each factor varied, and was strongest for the positive emotional domain for caregiver burden. These domains were generally consistent across demographic subsets of informal caregivers. These results provide researchers a more comprehensive understanding of caregiver burden to target interventions to protect caregiver health and maintain this vital component of the US health care system.

Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children

PubMed Central

Kaizik, Cassandra; Caga, Jashelle; Camino, Julieta; O’Connor, Claire M.; McKinnon, Colleen; Oyebode, Jan R.; Piguet, Olivier; Hodges, John R.; Mioshi, Eneida

2017-01-01

The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences. PMID:28106550

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives.

PubMed

Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L

2016-05-01

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers. Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis. In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms. Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

Informal Caregiving of Hospice Patients

PubMed Central

Pottie, Colin G.; Burch, Karen A.; Irwin, Scott A.

2014-01-01

Abstract Background: Informal caregivers play a critical role in the provision of care to hospice patients. The care they provide often impacts their physical and psychological well-being. Objective: This study synthesized 58 articles pertaining to informal hospice caregiving, focusing on caregivers' satisfaction with hospice services, the physical and psychological well-being of caregivers, the predictors of caregivers' well-being, the direct impact of hospice services on caregivers, and the effectiveness of targeted interventions for hospice caregivers. Method: A systematic literature review of journal articles published between 1985 and 2012 was conducted. Results: The studies reviewed found hospice caregivers to experience clinically significant levels of anxiety, depression, and stress; however, results for caregiver burden and quality of life were mixed. Caregivers' perceptions regarding the meaningfulness of care as well as their levels of social support were associated with enhanced psychological outcomes. Conclusions: Beyond satisfaction with hospice services, the direct impact of standard hospice care on caregivers remains uncertain. Caregiver intervention studies have demonstrated promising outcomes signifying a need for additional investigations into hospice-specific interventions that improve caregiver outcomes. Additional research and resources are needed to assist hospice caregivers, with the ultimate goal of minimizing their psychiatric and physical morbidity and enhancing their caregiving and subsequent bereavement processes. PMID:24992371

Vigilance. Evolution and definition for caregivers of family members with Alzheimer's disease.

PubMed

Mahoney, Diane Feeney

2003-08-01

The language of caregiving relies heavily on terms that are frequently negative such as caregiver stress and burden, but these are not universally accepted phenomenon. The purpose of this article is to report on the development of caregiver vigilance and to suggest it offers both neutral terminology and a means to include caregivers' perceptions of their supervisory role. The concept of vigilance emerged from a qualitative study of caregivers of family members with Alzheimer's disease. Vigilance is defined as the caregivers' continual oversight of their care recipients' activities. The five key components of vigilance were watchful supervision, protective intervening, anticipating, always on duty, and being there. Vigilant caregivers saw themselves as "on duty" even when they were not "doing things." The findings of this study support caregivers' perceptions of 24-hour-a-day responsibility. Nurses need to realize that caregiver vigilance is not necessarily diminished when professional caregivers intervene or institutionalization occurs. Debriefing caregivers about their unique family caregiving knowledge and incorporating it into caregiving is a key strategy for nurses to use to build caregiver trust and reduce their vigilance time.

Impact of Alzheimer disease patients' sleep disturbances on their caregivers.

PubMed

Gehrman, Philip; Gooneratne, Nalaka S; Brewster, Glenna S; Richards, Kathy C; Karlawish, Jason

Sleep disturbance symptoms are common in persons living with Alzheimer disease (AD). However little is known about the impact of sleep disturbance symptoms in patients living with AD on caregiver burden and quality of life (QOL). The aims of this study were to determine the prevalence of symptoms of disturbed sleep in patients with AD, identify the care-recipient sleep disturbance symptoms that predict caregiver burden and QoL, and determine how care-recipient sleep disturbance symptoms compare to other caregiver and patient characteristics when predicting caregiver QoL. Caregiver burden was assessed using the Screen for Caregiver Burden. Sixty percent of the care-recipients had at least one sleep symptom. In 130 caregiver/patient dyads, nocturnal awakenings, nocturnal wandering, and snoring predicted caregiver burden. Multivariate modeling demonstrated that caregiver burden, caregiver physical and mental health, and caregiver depression were predictors of overall caregiver QoL. Treating disturbed sleep in care-recipients and caregiver mental health symptoms could have important public health impact by improving the lives of the caregiving dyad. Copyright © 2017 Elsevier Inc. All rights reserved.

The Effects of Caregiving Resources on Perceived Health among Caregivers.

PubMed

Hong, Michin; Harrington, Donna

2016-08-01

This study examined how various types of resources influence perceived health of caregivers. Guided by the conservation of resources theory, a caregiver health model was built and tested using structural equation modeling. The caregiver health model consisted of caregiving situations (functional limitations and cognitive impairments of older adults and caregiving time), resources (financial resources, mastery, social support, family harmony, and service utilization), caregiver burden, and perceived health of caregivers. The sample included 1,837 unpaid informal caregivers drawn from the 2004 National Long-Term Caregiver Survey. The model fit indices indicated that the first structural model did not fit well; however, the revised model yielded an excellent model fit. More stressful caregiving situations were associated with fewer resources and higher burden, whereas greater resources were associated with lower burden and better perceived health of caregivers. The results suggest explicit implications for social work research and practice on how to protect the health of caregivers. © 2016 National Association of Social Workers.

Life Course Stage and Social Support Mobilization for End-of-Life Caregivers.

PubMed

LaValley, Susan A; Gage-Bouchard, Elizabeth A

2018-04-01

Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

Characteristics and mental health of Hispanic dementia caregivers in New York City.

PubMed

Luchsinger, José A; Tipiani, Dante; Torres-Patiño, Gabriela; Silver, Stephanie; Eimicke, Joseph P; Ramirez, Mildred; Teresi, Jeanne; Mittelman, Mary

2015-09-01

Dementia prevalence and related caregiving burden are increasing, particularly among Hispanics. We studied the characteristics and mental health of Hispanic caregivers in New York City. We recruited 139 Hispanic family caregivers. We collected data on sociodemographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than US$30 000 a year. In multivariate analyses with linear regression, lower satisfaction with social networks was associated with higher caregiver burden and a greater number of depressive symptoms. Higher dementia severity was associated with higher caregiver burden, while higher caregiver comorbidities were associated with higher depressive symptoms. Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers. © The Author(s) 2015.

More caregiving, less working: caregiving roles and gender difference.

PubMed

Lee, Yeonjung; Tang, Fengyan

2015-06-01

This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. © The Author(s) 2013.

How Caregivers Make Meaning of Child Mental Health Problems: Toward Understanding Caregiver Strain and Help Seeking.

PubMed

Mayberry, Lindsay S; Heflinger, Craig Anne

Family caregivers' conceptualizations of their child's emotional and behavioral problems (EBP) influence help-seeking for the child and caregiver strain. We analyzed 21 interviews with caregivers to explore their conceptualizations about the cause of their child's EBP, their experiences of strain, and their reported help-seeking behaviors. Caregivers had divergent conceptualizations of their child's EBP: 12 caregivers viewed the EBP as caused by a disorder and described the onset of symptoms as the central stressful event, whereas 9 caregivers described their child's problems as a response to an earlier stressor (e.g. trauma, abuse, divorce). Different patterns of caregiver strain and help-seeking were associated with caregiver conceptualization. All caregivers voiced a need for peer-to-peer support for caregivers and youth with EBP.

Assessing Impact on Family Caregivers to Alzheimer's Disease Patients.

ERIC Educational Resources Information Center

Talkington-Boyer, Shannon; Snyder, Douglas K.

1994-01-01

Examined impact of caregiving among 110 caregivers to aging family member with Alzheimer's disease. Family caregivers' appraisals along dimensions of subjective burden, negative impact, caregiving satisfaction, and caregiver mastery were correlated with extent of memory and behavior problems of patient and caregivers' coping style, locus of…

A comparative study to identify factors of caregiver burden between baby boomers and post baby boomers: a secondary analysis of a US online caregiver survey.

PubMed

Kim, Heejung; Lee, Sangeun; Cheon, Jooyoung; Hong, Soyun; Chang, Mido

2018-05-02

Baby boomers' position in the caregiving context is shifting from caregiver to care recipient as the population ages. While the unique characteristics of baby boomer caregivers are well established in caregiving literature, there is limited information about the next caregiving group after the baby boomers. In this study, the sociodemographic and caregiving-related characteristics of the two generations are compared and specific factors contributing to caregiver burden between baby boomer and post baby boomer caregivers are identified. This cross-sectional and correlational study used secondary analysis of data from the National Alliance for Caregiving and the American Association of Retired Persons. A structured online survey was conducted in 2014 with randomly selected samples (n = 1069) in the United States focusing on sociodemographics, caregiving-related characteristics, and burden of care. Descriptive statistics, multivariate linear regression analyses, and Steiger's Z-test were used to identify group differences in multivariate factors related to caregiver burden in two generational groups. Baby boomers and post baby boomers experienced caregiver burden to a similar degree. Caregiving-related factors are more likely to increase burden of care than sociodemographics in both groups. Caregiving without choice and spending longer hours on caregiving tasks were common factors that increased the burden in both generational groups (all p values < 0.01). However, post baby boomer caregivers reported additional challenges, such as unemployment during caregiving, the dual responsibility of both adult and child care, and a family relationship with the care recipient. Due to the aging population of baby boomers, post baby boomers encounter different challenges related to caregiving burden, which is often considered an additional workload in their life course. Current policy and program tailored to baby boomers should be re-designed to meet the different needs of emerging caregivers. Specific vulnerable subgroups should have priority to receive the benefits of specific policies, such as those without choice and younger, working caregivers.

Predictors of Depressive Symptoms in Caregivers of Patients with Heart Failure

PubMed Central

Chung, Misook L.; Pressler, Susan J.; Dunbar, Sandra B.; Lennie, Terry A.; Moser, Debra K.; Endowed, Gill

2010-01-01

Background Millions of family members deliver informal care and support to patients with heart failure (HF). Caregivers of patients with HF suffer from depressive symptoms, but factors associated with depressive symptoms are unknown. The purposes of this study were (1) to examine differences between caregivers with and without depressive symptoms in patients’ characteristics and caregivers’ functional status, caregiving burden (time devoted to caregiving, difficulty of caregiving tasks, and overall perceived caregiving distress), and perceived control; and (2) to determine predictors of depressive symptoms of caregivers. Method A total of 109 caregivers (mean age of 57 years; spousal caregiver 79%) and patients with HF participated in this study. Depressive symptoms, perceived control, and functional status of both patients and caregivers were assessed using the Beck Depression Inventory-II (BDI-II), the Control Attitudes Scale-Revised, and the Duke Activity Status Index, respectively. Caregivers’ burden (time and difficulty of caregiving tasks and burden) were assessed using the Oberst Caregiving Burden Scale, and the Zarit Burden Interview. Results The 27.5% of HF caregivers with depressive symptoms (BDI-II ≥ 14) had poorer functional status, lower perceived control, higher perceived caregiving distress, experienced more caregiving difficulty and spent more time in caregiving tasks than caregivers without depressive symptoms. Controlling for age and gender in a multiple regression, caregivers’ own functional disability (sβ = -.307, P < .001), perceived control (sβ = -.304, P < .001), and caregiver burden (sβ =.316, P = .002) explained 45% of the variance in caregivers’ depressive symptoms. Patients’ NYHA class and functional status did not predict caregivers’ depressive symptoms. Conclusion Caregivers’ poor functional status, overall perception of caregiving distress, and perceived control were associated with depressive symptoms. Depressed caregivers of patients with HF may benefit from interventions that improve caregivers’ perceived control, address the caregiving burden and improve or assist with caregivers’ functional status. PMID:20714239

Caregiver Strain among Black and White Daughter Caregivers: A Role Theory Perspective.

ERIC Educational Resources Information Center

Mui, Ada C.

1992-01-01

Examined caregiving strain of 117 African-American and 464 white daughter caregivers. African Americans reported less role strain. Conflict between caregiving duties and caregivers' personal/social life was predictor for both groups. Unique predictors were poor perceived health, unavailability of respite support, and lower caregiving role demand…

Caregiver Stress

MedlinePlus

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Psychometrics of the Zarit Burden Interview in Caregivers of Patients With Heart Failure.

PubMed

Al-Rawashdeh, Sami Y; Lennie, Terry A; Chung, Misook L

Identification of family caregivers who are burdened by the caregiving experience is vital to prevention of poor outcomes associated with caregiving. The Zarit Burden Interview (ZBI), a well-known measure of caregiving burden in caregivers of patients with dementia, has been used without being validated in caregivers of patients with heart failure (HF). The purpose of this study is to examine the reliability and validity of the ZBI in caregivers of patients with HF. A total of 124 primary caregivers of patients with HF completed survey questionnaires. Caregiving burden was measured by the ZBI. Reliability was examined using Cronbach's α and item-total/item-item correlations. Convergent validity was examined using correlations with the Oberst Caregiving Burden Scale. Construct validity was demonstrated by exploratory factor analysis and known hypothesis testing (ie, the hypothesis of the association between caregiving burden and depressive symptoms). Cronbach's α for the ZBI was .921. The ZBI had good item-total (r = 0.395-0.764) and item-item (mean r = 0.365) correlations. Significant correlations between the ZBI and the Oberst Caregiving Burden Scale (r = 0.466 for the caregiving time subscale and 0.583 for the caregiving task difficulty subscale; P < .001 for both) supported convergent validity. Four factors were identified (ie, consequences of caregiving, patient's dependence, exhaustion with caregiving and uncertainty, and guilt and fear for the patient's future) using factor analysis, which are consistent with previous studies. Caregivers with high burden scores had significantly higher depressive symptoms than did caregivers with lower burden scores (7.0 ± 6.8 vs 3.1 ± 4.3; P < .01). The findings provide evidence that the ZBI is a reliable and valid measure for assessing burden in caregivers of patients with HF.

Role of global stress in the health-related quality of life of caregivers: evidence from the Survey of the Health of Wisconsin.

PubMed

Litzelman, Kristin; Skinner, Halcyon G; Gangnon, Ronald E; Nieto, F Javier; Malecki, Kristen; Witt, Whitney P

2014-06-01

Informal caregivers play a critical role in the care of individuals who are aging or have disabilities and are at increased risk for poor health outcomes. This study sought to determine whether and to what extent: (1) global stress and health-related quality of life (HRQoL) differed between caregivers and non-caregivers; (2) global stress mediated the relationship between caregiving status and HRQoL; and (3) caregiver strain (i.e., stress attributable to caregiving) was associated with worse HRQoL after accounting for global stress. Cross-sectional data were from the 2008-2010 Survey of the Health of Wisconsin, a representative sample of adults aged 21-74 years. Participants (n = 1,364) completed questionnaires about caregiving status, sociodemographics, global stress, and HRQoL. Staged generalized additive models assessed the impact of caregiving on HRQoL and the role of caregiver strain and global stress in this relationship. In the last 12 months, 17.2% of the sample reported caregiving. Caregivers reported worse mental HRQoL than non-caregivers (β -1.88, p = 0.02); global stress mediated this relationship (p < 0.01). Caregivers with the highest levels of strain reported worse mental and physical HRQoL (β -7.12, p < 0.01), and caregivers with the lowest levels of strain reported better mental HRQoL (β 2.06, p = 0.01) than non-caregivers; these associations were attenuated by global stress (p < 0.01). Global stress, rather than caregiving per se, contributes to poor HRQoL among caregivers, above and beyond the effect of caregiving strain. Screening, monitoring, and reducing stress in multiple life domains presents an opportunity to improve HRQoL outcomes for caregivers.

Role of Global Stress in the Health-Related Quality of Life of Caregivers: Evidence from the Survey of the Health of Wisconsin

PubMed Central

Litzelman, Kristin; Skinner, Halcyon G.; Gangnon, Ronald E.; Nieto, F. Javier; Malecki, Kristen; Witt, Whitney P.

2014-01-01

Purpose Informal caregivers play a critical role in the care of individuals who are aging or have disabilities, and are at increased risk for poor health outcomes. This study sought to determine if and to what extent: 1) global stress and health-related quality of life (HRQoL) differed between caregivers and non-caregivers; 2) global stress mediated the relationship between caregiving status and HRQoL; and 3) caregiver strain (i.e., stress attributable to caregiving) was associated with worse HRQoL after accounting for global stress. Methods Cross-sectional data were from the 2008–2010 Survey of the Health of Wisconsin (SHOW), a representative sample of adults aged 21–74 years. Participants (n=1,364) completed questionnaires about caregiving status, socio-demographics, global stress, and HRQoL. Staged generalized additive models assessed the impact of caregiving on HRQoL and the role of caregiver strain and global stress in this relationship. Results 17.2% of the sample reported caregiving in the last 12 months. Caregivers reported worse mental HRQoL than non-caregivers (Beta: −1.88, p=0.02); global stress mediated this relationship (p<0.01). Caregivers with the highest levels of strain reported worse mental and physical HRQoL (Beta: −7.12, p<0.01) and caregivers with the lowest levels of strain reported better mental HRQoL (Beta: 2.06, p=0.01) than non-caregivers; these associations were attenuated by global stress (p<0.01). Conclusion Global stress, rather than caregiving per se, contributes to poor HRQoL among caregivers, above and beyond the effect of caregiving strain. Screening, monitoring, and reducing stress in multiple life domains presents an opportunity to improve HRQoL outcomes for caregivers. PMID:24322907

Distress associated with patients' symptoms and depression in a sample of Mexican caregivers of individuals with MS.

PubMed

Lehan, Tara; Arango-Lasprilla, Juan Carlos; Macias, Miguel Ángel; Aguayo, Adriana; Villaseñor, Teresita

2012-11-01

The objectives of this quantitative correlational study were to: (a) determine the frequency and level of distress associated with patients' symptoms as reported by caregivers of individuals with multiple sclerosis (MS), (b) determine the prevalence of depression in these caregivers, and (c) examine the relationship between these caregivers' total symptom distress and depression after controlling for patient, caregiver, and illness characteristics. In this quantitative correlational study, data from 79 caregivers of individuals with MS in Mexico were analyzed. The patient symptoms with the highest average level of distress for caregivers were depression, difficulty talking, difficulty hearing, becoming upset easily, and upsetting other people. Patient symptoms with the lowest average level of distress for caregivers included difficulty learning, seizures, trouble reading, difficulty eating, and difficulty writing. Forty percent of the caregivers met the criteria for probable major depressive disorder. Results of a multivariate regression analysis showed that caregiver total symptom distress was significantly related to caregiver depression, after controlling for patient marital status, caregiver gender, caregiver relationship to patient, caregiver current employment, and months spent caregiving. These findings have implications for MS patients and caregivers as well as larger society, as depression in caregivers often results in the institutionalization of individuals with chronic illnesses and disabilities, which is costly for both individuals and society. In addition, there might be increased expenditures associated with the caregivers' own declining health. For these reasons, it is important to develop a better understanding of its risk factors to identify caregivers who might benefit from intervention. PsycINFO Database Record (c) 2012 APA, all rights reserved.

A study on caregiver burden: stressors, challenges, and possible solutions.

PubMed

Bialon, Laura Nelson; Coke, Sallie

2012-05-01

The purpose of this qualitative study was to explore factors impacting caregiver burden and to explore possible solutions for family caregivers of terminally ill patients. The majority of caregivers reported experiencing role conflict and inadequate stress management. Caregivers who worked outside the home, those who cared for two parents concurrently, those with the least amount of outside assistance, and caregivers who spent a longer period of time caregiving reported the highest levels of health problems and overall burden. Caregivers stated a need for more support from Hospice agencies, more education on caregiver training, and more public education about Hospice services. Faith played a positive role in alleviating caregiver burden. Early identification, intervention, education and coordination of services may help to alleviate caregiver burden, which will improve quality of life for both patient and caregiver.

Factors Affecting Employment Among Informal Caregivers Assisting People with Multiple Sclerosis

PubMed Central

Huang, Chunfeng; Zheng, Zhida

2013-01-01

The objective of this study was to identify characteristics of informal caregivers, caregiving, and the people with multiple sclerosis (MS) receiving assistance that are associated with reduced caregiver employment. Data were collected during telephone interviews with 530 MS caregivers, including 215 employed caregivers, with these survey data analyzed using logistic regression. Poorer cognitive ability by the care recipient to make decisions about daily tasks and more caregiving hours per week predicted reduced caregiver employment. Better physical health domains of caregiver quality of life were associated with significantly lower odds of reduced employment. Health professionals treating informal caregivers, as well as those treating people with MS, need to be aware of respite, support, and intervention programs available to MS caregivers and refer them to these programs, which could reduce the negative impact of caregiving on employment. PMID:24453784

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

PubMed

Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

Positive aspects of caregiving in schizophrenia: A review

PubMed Central

Kulhara, Parmanand; Kate, Natasha; Grover, Sandeep; Nehra, Ritu

2012-01-01

Schizophrenia is a severe mental illness which is associated with significant consequences for both the patients and their relatives. Due to chronicity of the illness, the relatives of patients of schizophrenia have to bear the main brunt of the illness. Studies across the world have evaluated various aspects of caregiving and caregivers such as burden, coping, quality of life, social support, expressed emotions, and psychological morbidity. In general the research has looked at caregiving as a negative phenomenon, however, now it is increasingly recognised that caregiving is not only associated with negative consequences only, also experience subjective gains and satisfaction. This review focus on the conceptual issues, instruments available to assess the positive aspects of caregiving and the various correlates of positive aspects of caregiving reported in relation to schizophrenia. The positive aspect of caregiving has been variously measured as positive caregiving experience, caregiving satisfaction, caregiving gains and finding meaning through caregiving scale and positive aspects of caregiving experience. Studies suggests that caregivers of patients with schizophrenia and psychotic disorders experience caregiving gains (in the form of becoming more sensitive to persons with disabilities, clarity about their priorities in life and a greater sense of inner strength), experience good aspects of relationship with the patient, do have personal positive experiences. Some of the studies suggest that those who experience greater negative caregiving experience also do experience positive caregiving experience. PMID:24175167

Quality of life of caregivers with relatives suffering from mental illness in Hong Kong: roles of caregiver characteristics, caregiving burdens, and satisfaction with psychiatric services

PubMed Central

2012-01-01

Background The study attempted to explore the quality of life (QoL) of Chinese caregivers with mentally ill relatives. It also aimed to examine the differential roles of caregiving burdens, caregiver characteristics, and satisfaction with psychiatric services in caregivers' QoL. Methods 276 caregivers with relatives attending community psychiatric facilities in Hong Kong were invited to fill out a questionnaire. One sample t-tests were conducted to compare the results of this study with that of other Chinese populations in Hong Kong, Taiwan, and mainland China. A hierarchical regression analysis was performed to examine the relative influence of different factors on caregivers' QoL. Results Our sample of caregivers had significantly lower QoL scores than other Chinese populations. Results also suggest that Chinese caregivers who had chronic illness, younger in age, a lower education level, experienced more difficulties in handling negative symptoms, and were more dissatisfied with mental health services had poorer quality of life. Indeed, caregiver characteristics displayed a much stronger association with caregivers' QoL than did caregiving burdens and satisfaction with psychiatric services. Conclusions This study supports the strong association of caregiver characteristics and the QoL of caregivers and establishes the nature of the relationship between satisfaction with mental health services and caregiver QoL. Implications for future research and practice are discussed. PMID:22289443

Spousal Caregiver Narratives and Credible Authority: Uncertainty in Illness of Spousal Caregivers

ERIC Educational Resources Information Center

Sodowsky, Karen

2012-01-01

This article is taken from a larger longitudinal study that used caregiver interviews, caregiver surveys, and caregiver statistical information of one community. The interviews were conducted with six spousal caregivers to examine the narratives produced by spouses actively caring for their partners with dementia. The spousal caregivers were…

The mediating effect of caregiver burden on the caregivers' quality of life.

PubMed

Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo

2015-05-01

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.

Caregiver Café: Providing Education and Support to Family Caregivers of Patients With Cancer
.

PubMed

Finley, Joanne P

2018-02-01

The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center.
. The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources.
. The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend.
. Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study.

PubMed

Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke Hf; Cuijpers, Pim

2013-03-27

Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness. A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews. We identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver. The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.

Positive Aspects of Caregiving and Caregiver Burden: A Study of Caregivers of Patients With Dementia.

PubMed

Abdollahpour, Ibrahim; Nedjat, Saharnaz; Salimi, Yahya

2018-01-01

Now positive aspect of caregiving (PAC) is well-defined as caregiver gains, satisfaction, meaningful life, and enhanced family relationship. The adjusted association of PAC and caregiver burden is not well acknowledged. This study investigated the association of caregiver burden and PAC adjusting for potential confounders. This was a cross-sectional study that recruited 132 caregivers. A linear regression model with PAC was used to estimate the adjusted associations. The caregiver burden was negatively associated with PAC (mean difference in PAC per a 1-unit increase in caregiver burden = -0.12, 95% confidence interval: -0.18 to -0.056; P < .001). This association remained after adjustment for caregivers' age and marital status as well as patients' dependency level. The negative significant association of caregiver burden with PAC reinforces the need for interventional and/or educational programs aiming at decreasing the overall imposed burden. This can play an important role in improving caregivers' general health and quality of life.

Pediatric caregiver involvement in the assessment of physicians.

PubMed

Moreau, Katherine A; Pound, Catherine M; Eady, Kaylee

2015-08-01

Given the growth and benefits of consumerist and family-centred approaches to pediatric health care, there is a need to involve pediatric caregivers in the assessment of their children's physicians. We present interconnected questions that are important to address in order to facilitate pediatric caregiver involvement in the assessment of their children's physicians. Pediatric caregivers can be valuable assessors of physicians' non-technical skills. It is important to conduct additional research on caregiver involvement in assessment activities and create a reflective discourse on this topic. To ensure that pediatric caregivers' assessments of physicians are formally recognized and advantageous, it is important to understand: (a) what pediatric caregivers can assess; (b) what assessment tools exist for pediatric caregivers; (c) how to create appropriate assessment tools for pediatric caregivers; (d) how to collect pediatric caregivers' assessments; (e) how to increase the legitimacy, use, and effectiveness of pediatric caregivers' assessments; and (f) the consequences of pediatric caregiver assessment.

Does caregiving cause psychological distress? The case for familial and genetic vulnerabilities in female twins.

PubMed

Vitaliano, Peter P; Strachan, Eric; Dansie, Elizabeth; Goldberg, Jack; Buchwald, Dedra

2014-04-01

Informal caregiving can be deleterious to mental health, but research results are inconsistent and may reflect an interaction between caregiving and vulnerability to stress. We examined psychological distress among 1,228 female caregiving and non-caregiving twins. By examining monozygotic and dizygotic twin pairs discordant for caregiving, we assessed the extent to which distress is directly related to caregiving or confounded by common genes and environmental exposures. Caregiving was associated with distress as measured by mental health functioning, anxiety, perceived stress, and depression. The overall association between caregiving and distress was confounded by common genes and environment for mental health functioning, anxiety, and depression. Common environment also confounded the association of caregiving and perceived stress. Vulnerability to distress is a factor in predicting caregivers' psychosocial functioning. Additional research is needed to explicate the mechanisms by which common genes and environment increase the risk of distress among informal caregivers.

From Serving in the Military to Serving Loved Ones: Unique Experiences of Older Veteran Caregivers

PubMed Central

Monin, Joan K.; Levy, Becca; Pietrzak, Robert H.

2012-01-01

Objective We examined whether older caregiving veterans differ from non-caregiving veterans in terms of health and psychosocial factors; and how these factors and caregiving aspects (i.e., hours, relationship type) relate to caregiving strain and reward. We also evaluated the hypotheses that: (1) combat exposure provides protection from emotional caregiving strain; and (2) grandparenting is particularly rewarding. Design Cross-sectional web survey of a nationally representative sample of older veterans in the United States. Setting Data were drawn from the National Health and Resilience in Veterans Study. Participants 2,025 U.S. veterans aged 60 or older (mean age=71.0; SD=7.1; range=60-96). Measurements Participants completed measures of caregiving status, socio-demographic characteristics, combat exposure, physical and mental health, cognitive status, and psychosocial characteristics. Caregivers reported caregiving hours, caregiving type, emotional and physical strain, and reward. Results A total of 20.4% of U.S. older veterans are caregivers. As predicted, among the veteran caregivers, (1) combat exposure was associated with less emotional caregiving strain (odds ratio [OR]=0.57); and (2) grandparenting was associated with increased perception of caregiving reward (OR=5.28). Resilience was negatively associated with physical strain, while depressive symptoms were associated with greater emotional strain; gratitude, happiness, and social support were additionally associated with greater reward. Caregivers were more likely to be married and highly educated than non-caregivers, but did not differ with respect to health or psychosocial characteristics. Conclusions One in five older U.S. veterans is a caregiver. Older veterans’ combat exposure may decrease the emotional demands of caregiving, and grandparenting is perceived as particularly rewarding. Results suggest that older veterans are an important caregiving resource that deserves tailored resources. PMID:23567413

Factors affecting caregivers' ability to make environmental modifications.

PubMed

Messecar, D C

2000-12-01

This study explored factors that family caregivers described as affecting their ability to use environmental modifications. Intensive interviews and participant observation were used to collect detailed data from 24 primary family caregivers. Several factors that affect the caregivers' ability to implement modification strategies were identified in the analysis. These factors included attributes of the elderly individual, attributes of the modification, quality of the caregiver-elderly relationship, caregivers' skills, personal resources of the caregiver, and the informal and formal supports available. Of these factors, the most important were the salient skills that caregivers need to implement environmental modifications. These findings point to the importance of caregivers receiving skills training in this important dimension of caregiving. Intervention should be based on a collaborative approach that ensures the caregiver and care receiver's needs and preferences are respected.

Antecedents and consequences of caregiving structure on young mothers and their infants.

PubMed

Arnold, Anna; Lewis, Jessica; Maximovich, Alexey; Ickovics, Jeannette; Kershaw, Trace

2011-10-01

This study describes the multigenerational caregiving structure of infants born to young women, the prenatal predictors of caregiving structure, and the effects of caregiving structure on the health of young mothers and their infants 6 months postpartum. The sample consisted of 784 young mothers involved in a longitudinal study in two U.S. cities. Women were classified into eight caregiving structure groups based on the mother's report of herself as a caregiver and her selection of the baby's father and/or grandparents as caregivers. ANCOVA analyses identified predictors and 6 month postpartum outcomes of caregiving structure. Planned comparisons explored the relationships among caregiving structure groups. A majority of women reported caregiving structures other than herself and the father as caregivers (87.1%). Grandparents were indicated as caregivers by most women (62.2%). Postpartum caregiving groups differed on prenatal social support, self-esteem, attachment avoidance and anxiety, relationship status, and living with the baby's father. While mother's self esteem significantly predicted father involvement, there were no differences on predictors between when the mother and father were caregivers, versus when the mother and grandparents were caregivers. Differences existed between groups on mother and child outcomes, including parenting stress, distress, and child dysfunction. Women reported significantly less parenting stress, child dysfunction, and negative child emotions when she and the father were caregivers, versus when she and grandparents were caregivers. The family system and the intergenerational dynamics within a multigenerational caregiving structure are critical to the health and well-being of both mothers and their children.

Informal Caregivers Assisting People with Multiple Sclerosis

PubMed Central

Huang, Chunfeng

2011-01-01

The objective of this study was to identify characteristics of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving this assistance that are associated with the strength of the care-giver/care recipient relationship. Data were collected in a national survey of informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with caregiver perceptions of the strength of the relationship with the person with MS. The overall health of the person with MS was significantly associated with caregiver perceptions that providing assistance strengthened the caregiver/care recipient relationship, with poor health having a negative impact on the relationship. A spousal relationship between the caregiver and the person with MS was associated with significantly lower perceptions of a strengthened relationship. Conversely, caregiver perceptions that MS symptoms interfered with the independence of the person with MS in daily life were associated with caregiver perceptions of a strengthened relationship. Longer duration of caregiving and more hours per week spent providing assistance also were associated with a stronger relationship. In contrast, we found a significant negative association between caregiver perceptions that assisting the person with MS was burdensome and the strength of the relationship. Similarly, higher levels of education among caregivers tended to have a significantly negative impact on the caregiver/care recipient relationship. Our findings highlight the importance of addressing the needs and concerns of spousal caregivers. Health professionals who treat informal caregivers, as well as those treating people with MS, should be sensitive to the impact caregiving has on caregivers, especially spouses providing assistance. PMID:24453723

Assistive technologies in reducing caregiver burden among informal caregivers of older adults: a systematic review.

PubMed

Madara Marasinghe, Keshini

2016-01-01

The world population is rapidly ageing. As population age, the incidence of functional limitations increases, demanding higher levels of care from caregivers. Assistive technologies improve individuals' functioning, independence, well-being and quality of life. By increasing independence of older adults, assistive technologies decrease workloads required from informal caregivers. This review investigates, evaluates, and synthesises existing findings to examine whether and how assistive technologies reduce caregiver burden. Databases searched included MEDLINE, EMBASE, Scopus, and Cochrane Library. Three groups of keywords were combined: those relating to assistive technology, caregiver burden, and older adults. Two theories emerged from the analysis of study results. Caregivers reported that assistive technologies decrease caregiver burden. However, caregivers had concerns that assistive technologies could add to caregiver burden, highlighting the limitations of assistive technology. As suggested by a majority of the studies in this review, assistive technologies contribute to reducing caregiver burden among caregivers of older adults. Assistive technologies assisted caregivers by reducing time, levels of assistance and energy put towards caregiving, anxiety and fear, task difficulty, safety risk particularly for activities requiring physical assistance and increasing the independence of the users. Further research is required to better understand limitations of assistive technologies. Implications for Rehabilitation Support for informal caregivers of older adults need more attention and recognition. Assistive technologies can reduce caregiver burden among informal caregivers of older adults. Further research is required to better understand the effectiveness of assistive technologies in reducing caregiver burden as well as limitations and barriers associated with using assistive technologies.

Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada.

PubMed

Williams, Allison M; Wang, Li; Kitchen, Peter

2016-03-01

This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers. © 2015 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.

Antecedents and Consequences of Caregiving Structure on Young Mothers and Their Infants

PubMed Central

Lewis, Jessica; Maximovich, Alexey; Ickovics, Jeannette; Kershaw, Trace

2010-01-01

This study describes the multigenerational caregiving structure of infants born to young women, the prenatal predictors of caregiving structure, and the effects of caregiving structure on the health of young mothers and their infants 6 months postpartum. The sample consisted of 784 young mothers involved in a longitudinal study in two U.S. cities. Women were classified into eight caregiving structure groups based on the mother’s report of herself as a caregiver and her selection of the baby’s father and/or grandparents as caregivers. ANCOVA analyses identified predictors and 6 month postpartum outcomes of caregiving structure. Planned comparisons explored the relationships among caregiving structure groups. A majority of women reported caregiving structures other than herself and the father as caregivers (87.1%). Grandparents were indicated as caregivers by most women (62.2%). Postpartum caregiving groups differed on prenatal social support, self-esteem, attachment avoidance and anxiety, relationship status, and living with the baby’s father. While mother’s self esteem significantly predicted father involvement, there were no differences on predictors between when the mother and father were caregivers, versus when the mother and grandparents were caregivers. Differences existed between groups on mother and child outcomes, including parenting stress, distress, and child dysfunction. Women reported significantly less parenting stress, child dysfunction, and negative child emotions when she and the father were caregivers, versus when she and grandparents were caregivers. The family system and the intergenerational dynamics within a multigenerational caregiving structure are critical to the health and well-being of both mothers and their children. PMID:20680671

For Caregivers: Coping with Burnout

MedlinePlus

... with ALS and Caregivers ALS Registry Caregivers Assistive Technology for Caregivers Caregiving Tips and Hints The ALS Association Care Connection Coping With Burnout From One Caregiver to Another Respite Care Resources Military Veterans Stories of Courage Newly Diagnosed We’re here for ...

Biopsychological markers of distress in informal caregivers.

PubMed

Davis, Linda Lindsey; Weaver, Michael; Zamrini, Edward; Stevens, Alan; Kang, Duck-Hee; Parker, C Richard

2004-10-01

Thirty caregiving wives participated in a study of caregiving distress and negative mood (depressive symptoms) by making diary entries on stressful caregiving situations and collecting saliva samples 4 times a day. At the end of the 7-day study period, caregivers' salivary cortisol production was compared with their diary entries and correlated with pencil and paper self-report scores of caregiver distress and depressive symptoms. Despite the inability to control a number of factors thought to confound cortisol production (exercise, smoking, alcohol ingestion, and prescription medications), there was a statistically significant difference between No Caregiving and Caregiving cortisol, F(1,739) = 7.67, P = 0.006, with cortisol production higher when caregiving events occurred. However, efforts to code specific types of caregiving situations (e.g., 1 = indirect care; 4 = AD problem behavior care) did not further differentiate cortisol production. Although caregivers' self-reports for the same 7-day period indicated they were depressed, pencil-and-paper measures of distress and negative affect were not significantly correlated with cortisol production. The finding that this caregiving group was significantly stressed by caregiving, as evidenced by increased cortisol production during caregiving episodes, verifies the importance of further exploration of specific caregiving situations as contributory factors in caregiver health and well-being. In that saliva is a relatively economical and comparatively noninvasive biological data source for community-based stress studies, methodological limitations of the study are identified and 5 recommendations are made for future biological marker studies of caregiver distress in community-based settings. Copyright 2004 Sage Publications

Linking Caregiver Strain to Diabetes Illness Management and Health Outcomes in a Sample of Adolescents in Chronically Poor Metabolic Control

PubMed Central

Carcone, April Idalski; Ellis, Deborah A.; Naar-King, Sylvie

2012-01-01

Objective This study examined a multivariate model of the relationship between caregiver strain and adolescent diabetes illness outcomes in a sample of caregivers of adolescents in chronically poor metabolic control (Hba1c ≥ 8.0% at enrollment and for previous 12 months). Caregiver mental health symptoms were hypothesized to mediate the relationship between caregiver strain and adolescent illness management behavior and metabolic control. Caregivers’ perceptions of social support and their level of responsibility for diabetes care tasks were hypothesized to be directly related to caregiver strain and indirectly to caregiver mental health symptoms. Method One hundred forty-six caregiver-adolescent dyads completed baseline measures of caregiver strain, responsibility for diabetes care, social support, mental health symptoms, and illness management behavior. Adolescent metabolic control was also assessed. Results Findings from structural equation modeling suggested that caregiver strain was directly and positively associated with caregiver mental health symptoms which mediated the relationship to adolescent diabetes management behavior and metabolic control. Caregivers’ responsibility for diabetes care tasks was directly related to caregiver strain and indirectly to caregiver mental health, but caregiver perceptions of social support was not. Conclusions These findings suggest that caregiver strain is an important dimension of the caregiving context of diabetes. Clinicians and researchers should consider how caregiving strain, responsibility for illness management, and mental health symptoms might be impacting children’s diabetes care behavior and diabetes health when working with and designing interventions for adolescents with diabetes. PMID:22566030

Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity.

PubMed

Tough, Hannah; Brinkhof, Martin W; Siegrist, Johannes; Fekete, Christine

2017-10-01

To explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). Cross-sectional, observational. Community setting. Caregiving partners of persons with spinal cord injury (N=118). Not applicable. Subjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. Caregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (β=-1.10; 95% confidence interval [CI], -1.47 to -0.72; P<.001) and more caregiver satisfaction (odds ratio [OR], 1.18; 95% CI, 1.01-1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (β=-.38; 95% CI, -3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28-5.22; P=.80) disappeared when including relationship quality. Results highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role. Copyright © 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Spouse caregivers of Alzheimer patients: problem responses to caregiver burden.

PubMed

Croog, S H; Burleson, J A; Sudilovsky, A; Baume, R M

2006-03-01

This paper reports on comparisons of patterns of responses by 199 spouses of Alzheimer disease patients to stresses of functioning as caregivers. Focusing on gender and age of spouses, we examine effects of the total burden of caregiving and perceived patient problems on a set of emotional and social responses of caregivers. We also examine ways in which depressive symptoms and anxiety of spouse caregivers were associated with patterns of their responses to caregiving stresses. Total patient problem burden was most strongly associated positively with caregiver anger-resentment toward the patient, followed by caregiver concerns about personal time restriction and limitation of social life. Among individual areas of patient problems, emotional lability of the patient rather than cognitive impairment appeared strongest by far in affecting caregiver response measures. Negative impact of caregiving on their social life and associations appeared to have particularly marked effects on effects on caregiver depressive symptoms and anxiety scores. Spouse caregivers did not differ by age in clinically significant ways in their patterns of reaction to stresses of caregiving. The study suggests the importance of considering potential spouse caregiver reactions in such areas as anger and aggressive response to patients, the impact of feelings of social deprivation and personal sacrifice, as well as the implications of caregiving stresses for patient care and maintenance of family cohesion and quality of life.

[Evaluation of the primary caregiver syndrome when caring for elderly adults with immobility syndrome].

PubMed

Morales-Cariño, Elizabeth María; Jiménez-Herrera, Blanca L; Serrano-Miranda, Tirzo A

2012-01-01

Caregiver syndrome may develop in caregivers of elderly adults. To evaluate the repercussions of the immobility syndrome present in elderly adults on their primary caregivers as well as to determine the clinical and socio-demographic characteristics of the elderly adult and caregiver. The study population included patients over 65 recruited in the Geriatric Rehabilitation Department, with the diagnosis of immobility syndrome and that required a primary caregiver. A questionnaire including socio-demographic variables was applied to all patients and caregivers, and the Zarit scale was also applied to caregivers in order to determine the presence of caregiver syndrome. Analysis was performed with descriptive statistical methods; Student's t test and Fisher's test were used for comparisons between strata. 75 patients and their caregivers were evaluated; patient average age was 75.9 years and 85.3% were female. 50.7% (38 cases) had mild immobility. The average caregiver's age was 50.6%, 70.7% were female and 57.3% were the patient's daughter. Caregiver syndrome was detected in 60% of them: 57.7% had mild symptoms and in 42.2%, symptoms were moderate to severe. No statistically significant association was established between the development of caregiver syndrome and the degree of patient immobility. Caregivers of patients with immobility syndrome are at high risk of developing caregiver syndrome, thus underscoring the need to include primary caregiver support programs.

Compassionate Love in Individuals With Alzheimer’s Disease and Their Spousal Caregivers: Associations With Caregivers’ Psychological Health

PubMed Central

Monin, Joan K.; Schulz, Richard; Feeney, Brooke C.

2015-01-01

Purpose of the Study: To examine whether compassionate love in both individuals with Alzheimer’s disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Design and Methods: Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. Results: As hypothesized, both AD individuals’ and caregivers’ compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers’ compassionate love mediated the association between AD individuals’ compassionate love and caregivers’ burden as well as the association between AD individuals’ compassionate love and caregivers’ positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers’ compassionate love and less caregiver depressive symptoms. Implications: Results suggest that AD individuals’ compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers’ and AD individuals’ feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners’ compassionate love may benefit caregivers. PMID:24534607

Caregiver burden in Alzheimer's disease: Moderation effects of social support and mediation effects of positive aspects of caregiving.

PubMed

Wang, Zhixin; Ma, Caiyun; Han, Hongjuan; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

2018-06-01

Although there are many studies on the relationship between patient-related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. We aimed to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community-dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship. We conducted a cross-sectional study of patients diagnosed with AD from 2 hospitals and 3 communities in Taiyuan, China, and their caregivers. Latent moderated structural equations and the bias-corrected percentile bootstrap method were used to estimate the parameters of moderating and mediating effects, respectively. Social support significantly moderated the effects of AD patient cognitive function (P < 0.001) and depression (P = 0.001) on caregiver burden. Positive aspects of caregiving completely mediated the association between patient depression and caregiver burden (P = 0.006), caregiver anxiety (P = 0.007), and caregiver depression (P = 0.034). The findings identify social support as a moderator and positive aspects of caregiving as a mediator of the relationship between patient-related factors and negative caregiver outcomes. The results suggest that health care providers must offer more effective social support for caregivers. In addition, prompt identification of patient and caregiver emotional states could help to improve quality of life. Copyright © 2018 John Wiley & Sons, Ltd.

Alzheimer's aggression: influences on caregiver coping and resilience.

PubMed

Wilks, Scott E; Little, Kristina G; Gough, Heather R; Spurlock, Wanda J

2011-04-01

This study assessed impact of Alzheimer's patients' aggressive behavior (AD aggression) on caregiver coping strategies (task-, emotion-, and avoidance-focused) and caregiver resilience, and examined whether coping strategy moderated the AD aggression-caregiver resilience relationship. Informal caregivers across Louisiana (N = 419) completed surveys with measures of demographics, AD aggression, caregiver coping strategies, and caregiver resilience. Task-focused coping positively related to resilience. Aggression negatively predicted caregiver resilience. Emotion- and avoidance-focused coping strategies separately interacted with aggression and increased its negative relationship to caregiver resilience. Task-focused coping showed no moderation. Implications for social work professionals are discussed.

Understanding Family Caregiver Communication to Provide Family-Centered Cancer Care.

PubMed

Wittenberg, Elaine; Buller, Haley; Ferrell, Betty; Koczywas, Marianna; Borneman, Tami

2017-12-01

To describe a family caregiver communication typology and demonstrate identifiable communication challenges among four caregiver types: Manager, Carrier, Partner, and Lone. Case studies based on interviews with oncology family caregivers. Each caregiver type demonstrates unique communication challenges that can be identified. Recognition of a specific caregiver type will help nurses to adapt their own communication to provide tailored support. Family-centered cancer care requires attention to the communication challenges faced by family caregivers. Understanding the challenges among four family caregiver communication types will enable nurses to better address caregiver burden and family conflict. Copyright © 2017 Elsevier Inc. All rights reserved.

A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation.

PubMed

Robison, Julie; Fortinsky, Richard; Kleppinger, Alison; Shugrue, Noreen; Porter, Martha

2009-11-01

Informal caregivers provide the majority of long-term care. This study examined six health and psychosocial outcomes of caregiving, in the context of multiple characteristics of the caregiving situation, in a representative, statewide sample. Data came from 4,041 respondents to the 2007 Connecticut Long-Term Care Needs Assessment. Analyses investigated whether caregiving negatively affects depressive symptoms, health, missing work, and social isolation. Logistic regressions tested the independent effects of caregiver characteristics and conditions of the caregiving situation on these health and psychosocial outcomes. Caregivers rate their health better than noncaregivers and do not report more depressive symptoms or social isolation. Living with the care receiver, inadequate income, and care receivers' unmet need for community-based long-term care services relate to multiple negative outcomes. Care receiver memory problems and caregiver/care receiver relationship do not relate to health or psychosocial outcomes when these other factors are considered. Caregiving per se does not lead to symptoms of depression, poor health, or social isolation. Many caregivers do need supports in training and education, respite, and physical and mental health care. Such programs should provide outreach to caregivers facing specific stressful conditions, as not all caregivers experience negative consequences.

Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?

PubMed

Scharlach, Andrew E; Gustavson, Kristen; Dal Santo, Teresa S

2007-12-01

This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

Caring for Caregivers and Patients: Research and Clinical Priorities for Informal Cancer Caregiving

PubMed Central

Kent, Erin E.; Rowland, Julia H.; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O’Mara, Ann; Huss, Karen

2017-01-01

Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers, their tasks, psychosocial needs and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and by consequence, their caregivers, warrant increased attention to the roles and demands of caregiving. This paper reviews current evidence presented in a two-day meeting to examine the state of the science of informal cancer caregiving convened by the National Cancer Institute and National Institute for Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This paper offers recommendations for moving science forward in four areas: (1) improve estimation of the prevalence and burden of informal cancer caregiving; (2) advance development of interventions designed to improve outcomes in cancer patients, caregivers, and patient-caregiver dyads; (3) generate and test strategies to integrate caregivers into formal healthcare settings; and (4) promote use of technology to support informal cancer caregivers. PMID:26991807

The impact of relationships, motivations, and meanings on dementia caregiving outcomes.

PubMed

Quinn, Catherine; Clare, Linda; McGuinness, Ted; Woods, Robert T

2012-11-01

Numerous theoretical models have been developed to explore how caregiving can impact on caregiving outcomes. However, limited attention has been given to the effects of caregivers' motivations for providing care, the meaning they find in caregiving, and the nature of their relationship with the care-recipient. The current study explored the associations between intrinsic and extrinsic motivations, ability to find meaning in caregiving, and pre-caregiving and current relationship quality, and the way in which these variables interact to influence caregiving outcomes. This was a cross-sectional questionnaire study, in which the respondents were 447 caregivers of people with dementia who were in receipt of a specialist nursing service. The results showed that intrinsic motivations, meaning, and pre-caregiving and current relationship quality were significantly related to each other, while extrinsic motivations were only related to intrinsic motivations and meaning. All these factors were significantly related to caregiving outcomes as measured by caregiver burden, role captivity, and competence. Based on these findings, it is recommended that interventions aimed at reducing caregiving stress should take into account the impact of the quality of the relationship and the caregivers' motivations for providing care. More longitudinal research is needed to explore how meanings, motivations, and relationship quality change over the caregiving career.

The Relationship among Caregiving Characteristics, Caregiver Strain, and Health-Related Quality of Life: Evidence from the Survey of the Health of Wisconsin

PubMed Central

Litzelman, Kristin; Skinner, Halcyon G.; Gangnon, Ronald E.; Nieto, F. Javier; Malecki, Kristen; Witt, Whitney P.

2015-01-01

Purpose In order to better understand how family caregiving may contribute to poor health outcomes, this study sought to determine 1) if and to what extent caregiving characteristics were associated with caregiver strain and health-related quality of life (HRQoL), and 2) whether caregiver strain mediated this association. Methods Data were from the 2008–2010 Survey of the Health of Wisconsin, a representative sample of Wisconsin adults aged 21–74 years. Participants completed questionnaires about their caregiving, sociodemographics, and HRQoL; 264 caregivers were identified. Staged generalized additive models assessed the associations between caregiving characteristics, caregiver strain, and HRQoL; survey weights were applied to account for the complex sampling design. Results More hours per week of care and greater duration of caregiving were associated with higher levels of strain. Greater caregiver strain was in turn associated with worse mental HRQoL. However, most caregiving characteristics were not directly associated with mental or physical HRQoL. Conclusions The findings suggest a chains-of-risk model in which caregiving may increase strain, which may in turn adversely influence mental HRQoL. Using this perspective to refine interventions may improve our ability to support caregivers on practice and policy levels. PMID:25427430

The relationship among caregiving characteristics, caregiver strain, and health-related quality of life: evidence from the Survey of the Health of Wisconsin.

PubMed

Litzelman, Kristin; Skinner, Halcyon G; Gangnon, Ronald E; Nieto, F Javier; Malecki, Kristen; Witt, Whitney P

2015-06-01

In order to better understand how family caregiving may contribute to poor health outcomes, this study sought to determine (1) if and to what extent caregiving characteristics were associated with caregiver strain and health-related quality of life (HRQoL), and (2) whether caregiver strain mediated this association. Data were from the 2008-2010 Survey of the Health of Wisconsin, a representative sample of Wisconsin adults aged 21-74 years. Participants completed questionnaires about their caregiving, sociodemographics, and HRQoL; 264 caregivers were identified. Staged generalized additive models assessed the associations among caregiving characteristics, caregiver strain, and HRQoL; survey weights were applied to account for the complex sampling design. More hours per week of care and greater duration of caregiving were associated with higher levels of strain. Greater caregiver strain was in turn associated with worse mental HRQoL. However, most caregiving characteristics were not directly associated with mental or physical HRQoL. The findings suggest a chains-of-risk model in which caregiving may increase strain, which may in turn adversely influence mental HRQoL. Using this perspective to refine interventions may improve our ability to support caregivers on practice and policy levels.

Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India.

PubMed

Kate, N; Grover, S; Kulhara, P; Nehra, R

2013-06-01

OBJECTIVE. To study the positive aspects of caregiving and its correlates in primary caregivers of patients with schizophrenia. METHODS. A total of 100 patients with schizophrenia and their primary caregivers were evaluated. Regarding the caregivers, their positive aspects of caregiving were assessed on the Scale for Positive Aspects of Caregiving Experience (SPACE). To examine the correlates of positive aspects of caregiving, they were also assessed on the Family Burden Interview (FBI) Schedule, the Involvement Evaluation Questionnaire (IEQ), coping checklist, the Social Support Questionnaire, the World Health Organization Quality of Life-BREF (Hindi version), the WHO Quality of Life-Spirituality, Religiousness and Personal Beliefs Scale, as well as the General Health Questionnaire-12. The patients were assessed on the Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning Scale. RESULTS. On the SPACE, the highest mean score was seen in the domain of motivation for the caregiving role (2.7), followed by that of caregiver satisfaction (2.4) and caregiver gains (2.3). The mean score was least for the domain of self-esteem and social aspect of caring (1.9). The SPACE domain of caregiver satisfaction correlated negatively with many aspects of burden as assessed by FBI Schedule and coping as assessed by the coping checklist; whereas the self-esteem and social aspect of caring domain correlated positively with worrying-urging II domain and the total IEQ score. No significant correlations between the SPACE and socio-demographics as well as most of the clinical variables were noted. Motivation for the caregiving had a positive correlation with the PANSS negative symptom scale. Multiple correlations were found between the SPACE and quality of life, suggesting that higher positive caregiving experience was associated with better quality of life in caregivers. CONCLUSION. Caregivers of patients with schizophrenia do enjoy positive aspects of caregiving while taking care of their ill relatives. In these caregivers, the positive aspects of caregiving were associated with better quality of life.

Rural and Urban Caregivers for Older Adults in Poland: Perceptions of Positive and Negative Impact of Caregiving

ERIC Educational Resources Information Center

Bien, Barbara; Wojszel, Beata; Sikorska-Simmons, Elzbieta

2007-01-01

This study examines rural-urban differences in informal caregivers' perceptions of caregiving. The study's theoretical framework is based on the two-factor model of caregiving, which views caregiving as having both positive and negative impact. Data were collected in personal interviews with 126 rural and 127 urban caregivers in the Bialystok…

Health behaviors among Baby Boomer informal caregivers.

PubMed

Hoffman, Geoffrey J; Lee, Jihey; Mendez-Luck, Carolyn A

2012-04-01

This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal caregivers and 12,941 non-caregivers. Logistic regression models were estimated separately for four individual health-risk behaviors-smoking, sedentary behavior, and regular soda and fast-food consumption-as well as a global health-risk measure. Controlling for psychological distress and personal characteristics and social resources such as age, gender, income and education, work and marital status, and neighborhood safety, caregivers had greater odds than non-caregivers of overall negative health behavior and of smoking and regular soda and fast-food consumption. We did not observe significant differences in odds of negative behavior related to stress for spousal caregivers and caregivers in the role for longer periods of time or those providing more hours of weekly care compared with other caregivers. Our study found evidence that Baby Boomer caregivers engage in poor health behaviors that are associated with exposure to caregiving. Baby Boomer caregivers may be at risk for certain behavioral factors that are associated with disability and chronic illness.

Mothers' and fathers' attachment and caregiving representations during transition to parenthood: an actor-partner approach.

PubMed

Fonseca, Ana; Nazaré, Bárbara; Canavarro, Maria Cristina

2018-07-01

This study aimed to investigate the effect of one's attachment representations on one's and the partner's caregiving representations. According to attachment theory, individual differences in parenting and caregiving behaviours may be a function of parents' caregiving representations of the self as caregiver, and of others as worthy of care, which are rooted on parents' attachment representations. Furthermore, the care-seeking and caregiving interactions that occur within the couple relationship may also shape individuals' caregiving representations. The sample comprised 286 cohabiting couples who were assessed during pregnancy (attachment representations) and one month post-birth (caregiving representations). Path analyses were used to examine effects among variables. Results showed that for mothers and fathers, their own more insecure attachment representations predicted their less positive caregiving representations of the self as caregiver and of others as worthy of help and more self-focused motivations for caregiving. Moreover, fathers' attachment representations were found to predict mothers' caregiving representations of themselves as caregivers. Secure attachment representations of both members of the couple seem to be an inner resource promoting parents' positive representations of caregiving, and should be assessed and fostered during the transition to parenthood in both members of the couple.

Certified Nursing Assistants Balancing Family Caregiving Roles: Health Care Utilization Among Double- and Triple-Duty Caregivers

PubMed Central

DePasquale, Nicole; Bangerter, Lauren R.; Williams, Jessica; Almeida, David M.

2016-01-01

Purpose of the Study: This study examines how certified nursing assistants (CNAs) balancing family caregiving roles—child care (double-duty child caregivers), elder care (double-duty elder caregivers), and both child and elder care (triple-duty caregivers)—utilize health care services relative to nonfamily caregiving counterparts (formal-only caregivers). Design and Methods: A sample of 884 CNAs from the Work, Family and Health Study was drawn on to assess the number of acute care (i.e., emergency room or urgent care facility) and other health care (i.e., outpatient treatment or counseling) visits made during the past 6 months. Results: Double-duty elder and triple-duty caregivers had higher acute care utilization rates than formal-only caregivers. CNAs with and without family caregiving roles had similar rates of other health care visits. Implications: CNAs providing informal care for older adults have higher acute care visit rates. Given the increasing need for family caregivers and the vital importance of the health of the nursing workforce for the health of others, future research on how double- and triple-duty caregivers maintain their health amidst constant caregiving should be a priority. PMID:26224763

The association between meaning of caregiving, perceived social support and level of depression of Taiwanese caregivers of mentally ill patients.

PubMed

Yen, Wen-Jiuan; Lundeen, Sally

2006-09-01

Caregiving is a demanding responsibility. Because of the de-institutionalization movement, much of the care provided by hospitals has been shifted to the community. Caregivers' issues cannot be overlooked. The purposes of the study are: (a) to understand meaning of caregiving, perceived social support and level of depression of caregivers during the transition phase immediately following a family members' discharge from the hospital to the community; (b) to determine the association between determinants and meaning of caregiving, perceived social support level of depression; (c) to determine the association between meaning of caregiving, perceived social support level of depression. Fifty five caregivers of schizophrenic patients were recruited from a private hospital in Taipei, Taiwan. Certain characteristics of caregivers were found to be associated with lower levels of depression, meaning of caregiving and perceived social support. Perceived social support was shown to be a mediator between the meaning of caregiving and caregivers' level of depression. Despite the small sample size, the findings can serve as a reference for mental health professionals as they develop mental health care program for patients and also for caregivers.

Experiences of Informal Caregivers of Older Adults Transitioned From Nursing Homes to the Community Through the Money Follows the Person Demonstration.

PubMed

Kristof, Lorand; Fortinsky, Richard H; Kellett, Kathy; Porter, Martha; Robison, Julie

2017-01-01

This study examined experiences of 156 informal caregivers of older adults who transitioned to the community through the Connecticut Money Follows the Person (MFP) Rebalancing Demonstration after prolonged nursing home stays. Caregiver burden, positive aspects of caregiving, depressive symptoms, anxiety, and comparative subjective stress were examined in relation to caregiver demographics and care receiver characteristics with a cross-sectional survey. Caregivers reported low burden, depressive symptoms, and anxiety, and fairly high levels of positive aspects of caregiving and satisfaction with community services. Most caregivers were less stressed compared to the time the care recipient was in, or before they entered, a nursing home. Live-in caregivers experienced more positive aspects of caregiving, but adult children reported higher burden than other caregivers. Unmet service needs also increased caregiver burden. Programs like MFP are a viable option with broadly positive outcomes from a caregiver's perspective. Enthusiasm for increasing access to community care is growing for older adults who otherwise would reside in nursing homes for extended periods. Identifying unmet service needs and needs for targeted functional support could further enhance caregiver experiences and contribute to the successful transition of older adults to the community.

Acculturation level and caregiver outcomes from a randomized intervention trial to enhance caregivers' health: evidence from REACH II.

PubMed

Meyer, Oanh L; Liu, Xiaoyan Lucia; Tancredi, Daniel; Ramirez, A Susana; Schulz, Richard; Hinton, Ladson

2018-06-01

Latinos comprise a growing segment of the caregiver population and vary widely in acculturation, yet little is known regarding how acculturation might affect caregiver stress or intervention outcomes. This study examined the relationship between acculturation and burden, bother, and depression in Latino dementia caregivers at baseline and following an intervention. This was a secondary data analysis of 211 Latino caregivers of older adults with dementia from Resources for Enhancing Alzheimer's Caregiver Health (REACH) II, a multisite randomized trial of caregiver interventions. Baseline and follow-up data were used to run mixed-effects models examining the main and moderating effect of acculturation on caregiver stress. No significant main effect of acculturation was found for any of the outcome measures, controlling for demographic covariates. Acculturation moderated the effect of the intervention on caregiver burden: those who were more acculturated benefited more from the intervention. Differential acculturation for Latino caregivers was not directly associated with caregiver burden, bother, or depression, but was associated with reducing burden from the intervention. Future research should explore by what mechanism acculturation influences caregiver burden following an intervention.

Influence of home care services on caregivers' burden and satisfaction.

PubMed

Kim, Eun-Young; Yeom, Hyun-E

2016-06-01

To examine the factors affecting the burden and satisfaction of family caregivers, focusing on the beneficial impacts of home care service use. Long-term care for older patients is a multifaceted process that brings both burden and satisfaction to family caregivers. It is expected that home care services offered by the Korean long-term care insurance may contribute to decreasing the burden of family caregivers and enhancing their satisfaction by assisting with practical caregiving tasks. A cross-sectional study. A convenience sample of 157 family caregivers was recruited from five home care service agencies in South Korea. Information about the caregivers, caregiving history, older care recipients and use of home care services was assessed. The effects of home care service use on caregiving burden and satisfaction were tested using hierarchical multiple regression analyses after adjusting for the characteristics of the caregivers, caregiving history and older care recipients. There was no significant influence of home care service use on reducing caregiving burden or on increasing caregivers' satisfaction. Although several factors were associated with caregiving burden and satisfaction, family functioning was the most unique factor to significantly affect both caregiving burden and satisfaction. Home care services might not automatically have a positive impact on caregivers' burden and satisfaction, but maintaining healthy family functioning is an important issue for family caregivers. The findings highlight the important need to reconsider ways to provide home care services and to develop nursing interventions to reinforce supportive family functioning. Practical strategies for providing home care services should be developed through a concrete assessment of the family dynamics and the needs of family caregivers. Health professionals should play a pivotal role in performing the assessment and in developing interventions to strengthen supportive family functioning. © 2016 John Wiley & Sons Ltd.

Caregiving appraisal of family caregivers for older stroke patients in Korea.

PubMed

Lee, J; Yoo, M S; Jung, D

2010-03-01

The purpose of this study was to investigate factors related to caregiving appraisal for family caregivers of older stroke patients in Korea. A descriptive, cross-sectional survey of a sample of 242 family caregivers (95.7% response rate) was conducted in Korea from 1 January 2005 to 4 January 2007. Data were collected from outpatient stroke centres at three hospitals and two home health agencies located in Seoul, the capital city of Korea, its suburban area of Kyunggi-do, and the rural areas Gyeongsangbuk-do and Chungcheongbuk-do. The questionnaire was self-administered. spss 13.0 (SPSS, Inc., Chicago, IL, USA) was used to perform frequency, percentage, mean standard deviation, t-test or analysis of variance, and Pearson's correlation calculations. Caregiving appraisal was statistically different based on the caregiver's location of residency and the relationship between the caregiver and the recipient. The caregivers who resided in urban areas reported higher scores of caregiving appraisal compared with those who resided in rural areas. With regard to the caregiver-recipient relationship, spouses reported the highest caregiving distress status, followed by daughters-in-law, sons and, finally, daughters. In addition, caregiving distress significantly correlated with age (r = 0.151, P = 0.022), the number of caregiving hours per week (r = 0.198, P = 0.003) and filial obligations (r = 0.336, P = 0.000). The study results helped to better understand the caregiving process of Korean family caregivers. The data emphasized the importance of examining the expression of cultural roles and individual values on the caregivers' quality of life in diverse cultures. The knowledge gained from this study will be utilized to develop culture-specific interventions and social policies to directly support Korean family caregivers and to indirectly support stroke patients.

Conceptual challenges in the study of caregiver-care recipient relationships.

PubMed

Lingler, Jennifer Hagerty; Sherwood, Paula R; Crighton, Margaret H; Song, Mi-Kyung; Happ, Mary Beth

2008-01-01

In the literature on family caregiving, care receiving and caregiving are generally treated as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. To illustrate ways care dynamics may depart from traditional notions of dyadic unidirectional family caregiving and to stimulate a discussion of the implications of complex relational care dynamics for caregiving science. Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) care dyads who are aging, are chronically ill, and who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously.

Conceptual Challenges in the Study of Caregiver-Care Recipient Relationships

PubMed Central

Lingler, Jennifer Hagerty; Sherwood, Paula R.; Crighton, Margaret H.; Song, Mi-Kyung; Happ, Mary Beth

2010-01-01

Background In the literature on family caregiving, care receiving and caregiving are treated generally as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. Objectives To illustrate ways care dynamics may depart from traditional notions of dyadic, unidirectional family caregiving; and to stimulate a discussion of the implications of complex, relational care dynamics for caregiving science. Approach Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) aging and chronically ill care dyads who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. Conclusions These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously. PMID:18794721

Cancer Caregiver: Perceived Benefits of Technology.

PubMed

Lapid, Maria I; Atherton, Pamela J; Clark, Matthew M; Kung, Simon; Sloan, Jeff A; Rummans, Teresa A

2015-11-01

The burden associated with caregiving has been well documented. Caregivers have multiple responsibilities, and technology may be accessible as a potential burden-alleviating resource. We surveyed cancer caregivers regarding current technology use and willingness to use technology for easing burden or distress. Because age has been associated with technology use, responses were compared between geriatric (≥65 years old) and nongeriatric (18-64 years old) caregivers. We had 112 respondents. Based on nonmissing responses, 66% (n=71) were women, 95% (n=106) were white, and 84% (n=91) had post-high school education. Almost all caregivers reported having Internet (105 [94%]) and e-mail (102 [91%]) access. Nongeriatric caregivers indicated more willingness to access Internet-based tools that help caregivers (54 [93%] versus 41 [76%]; p=0.04) and were more frequent users of social media (37 [64%] versus 16 [30%]; p=0.01), smartphones (33 [57%] versus 16 [30%]; p=0.01), and other mobile wireless devices (42 [72%] versus 19 [35%]; p<0.001) than geriatric caregivers. They also more frequently expected technologies to improve their own quality of life (p=0.009), increase their feelings of being effective as a caregiver (p=0.02), and save time (p=0.003). Regardless of age, a majority of caregivers (67 [62%]) endorsed the potential benefit of caregiving technologies in preventing burnout. Most caregivers have high access to and use of technology. Geriatric and nongeriatric caregivers were receptive to technology-based tools to help with their caregiving roles. Although nongeriatric caregivers expected to derive more benefit from such tools, both groups believed that caregiving technologies could reduce burden.

A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: a randomised clinical trial.

PubMed

Belgacem, Bénédicte; Auclair, Candy; Fedor, Marie-Christine; Brugnon, David; Blanquet, Marie; Tournilhac, Olivier; Gerbaud, Laurent

2013-12-01

The French setting, including laws and guidelines, advocates greater involvement of informal caregivers in the care of cancer patients to protect the caregivers from depression, distress, and a decrease in their quality of life. This study aimed to assess the efficacy of a caregiver educational programme by measuring two outcomes: patients' and caregivers' quality of life and caregivers' burden. A multicentre randomised controlled trial was performed in six oncology wards in French hospitals. Eligible patients had a cancer, a main caregiver, allowed their caregivers' involvement, and received an inclusion agreement by a doctor/psychologist dyad. The experimental group participated in an educational programme performed by nurses to improve their skills in meal support, nursing care, welfare care, or symptom management. The SF36 and the Zarit burden scales were used to measure quality of life and caregivers' burden at the beginning and at the end of the study. 67 patients were randomised and 33 were included in the experimental group. Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers. An educational programme for caregivers encourages the involvement of patients, informal caregivers and health-care providers in a triangular relationship which enhances the quality of life of patients and caregivers alike and decreases caregivers' burden. Care organisation should therefore be rethought as a triangular relationship between patients, caregivers and health-care providers, with nurses as the mainstay. Copyright © 2013 Elsevier Ltd. All rights reserved.

Do informal caregivers in mental illness feel more burdened? A comparative study of mental versus somatic illnesses.

PubMed

Hastrup, Lene H; Van Den Berg, Bernard; Gyrd-Hansen, Dorte

2011-08-01

This study investigates a possible added subjective burden among informal caregivers to care recipients with a mental illness or a combination of mental and somatic illnesses compared with caregivers to care recipients with a somatic illness. The study also investigates the subjective caregiver burden by caregivers' characteristics and objective burden. The association between subjective caregiver burden and socio-demographic factors, objective burden, and health-related quality of life was analyzed in a population of 865 Dutch informal caregivers, using multiple linear regression analysis. Controlling for other factors in the analysis, we found that caring for a recipient with mental illness or a combination of mental and somatic illness was associated with an extra subjective caregiver burden (measured by Caregiver Strain Index). Objective burden, in terms of more than 50 hours of care provision per week, less than three years of caregiving, or living together with the care recipients was associated with higher subjective caregiver burden. Other factors associated with higher subjective caregiver burden were being partners or a child of care recipient, having a paid job, a low health-related quality of life (EQ-5D), or having an illness. This study suggests that caregivers to care recipients with a mental and especially a combination of mental and somatic illnesses have a higher subjective caregiver burden compared with caregivers to care recipients with a somatic illness. Because the study is not representative of all caregivers, more research focusing on identifying and contacting informal caregivers is needed to confirm the result.

Problems and Benefits Reported by Stroke Family Caregivers: Results from a Prospective Epidemiological Study

PubMed Central

Haley, William E.; Allen, Jessica Y.; Grant, Joan S.; Clay, Olivio J.; Perkins, Martinique; Roth, David L.

2009-01-01

Background and Purpose Stroke symptoms can be very stressful for family caregivers, but most knowledge about the prevalence and stressfulness of stroke-related patient problems is derived from convenience samples. In addition, little is known about perceived benefits of the stroke caregiving experience. The purpose of this study was to determine the prevalence and stressfulness of stroke-related problems, and perceived benefits of caregiving, as reported by an epidemiologically-derived sample of caregivers of stroke survivors. Methods Stroke survivors (N=75) from a prospective epidemiological study of stroke, the REasons for Geographic and Racial Differences in Stroke (REGARDS) study, and their family caregivers were followed. Caregivers were given a comprehensive telephone interview 8 to 12 months after the stroke, using measures of stroke patient problems, caregiver appraisals of the stressfulness of these problems, and perceived benefits of caregiving. Results Caregivers rated patient problems with mood (depression, loneliness and anxiety), memory, and physical care (bowel control), as the most stressful, but reported prevalence of these problems was lower than those reported previously in studies using clinical samples. Caregivers also reported many benefits from caregiving, with over 90% reporting that caregiving enabled them to appreciate life more. Conclusions Epidemiologically based studies of stroke caregiving provide a unique picture of caregiver strains and benefits compared with clinical studies, which tend to over-represent more impaired patients. Support for caregivers should include interventions to aid their coping with highly stressful mood, physical care, and cognitive problems of stroke patients, but should also attend to perceived benefits of caregiving. PMID:19407230

The Need for Mental Health Care Among Informal Caregivers Assisting People with Multiple Sclerosis

PubMed Central

Huang, Chunfeng

2013-01-01

The objective of this study was to identify characteristics of informal caregivers and people with multiple sclerosis (MS) receiving assistance that are associated with the caregiver's perceived need for mental health care. Survey data were collected in interviews with 530 caregivers and analyzed using a logistic regression model. We found that older caregiver age significantly decreased the odds of caregivers' perceived need for mental health treatment. Better mental health domains of health-related quality of life among caregivers, as measured by the 8-item Short Form Health Status Survey (SF-8), also were associated with decreased odds of the need for mental health care. In contrast, the caregiver's feeling that providing assistance was emotionally draining or the belief that this assistance threatened the caregiver/care recipient relationship significantly increased the odds of caregivers' needing mental health treatment. Health professionals treating informal caregivers should be sensitive to the impact that providing assistance has on the emotions, relationships, and mental health needs of caregivers. PMID:24453764

Neuropsychiatric Symptoms and Executive Functioning in Patients with Mild Cognitive Impairment: Relationship to Caregiver Burden

PubMed Central

Ryan, Kelly A.; Weldon, Anne; Persad, Carol; Heidebrink, Judith L.; Barbas, Nancy; Giordani, Bruno

2013-01-01

Background Caregivers of patients with mild cognitive impairment (MCI) need similar levels of support services as Alzheimer’s disease (AD) caregivers, but it is unclear if this translates to increased caregiver burden. Methods 135 participants and their caregivers (40 MCI, 55 AD and 40 normal controls, NC) completed questionnaires, and the patients were administered neuropsychological tests. Results The MCI caregivers reported significantly more overall caregiving burden than the NC, but less than the AD. They showed similar levels of emotional, physical and social burden as the AD caregivers. Among the MCI caregivers, the neuropsychiatric symptoms and executive functioning of the patients were related to a greater burden, and the caregivers with a greater burden reported lower life satisfaction and social support, and a greater need for support services. Conclusion These results indicate that MCI caregivers are at increased risk for caregiver stress, and they require enhanced assistance and/or education in caring for their loved ones. PMID:23128102

Types of Family Caregiving and Daily Experiences in Midlife and Late Adulthood: The Moderating Influences of Marital Status and Age.

PubMed

Wong, Jen D; Shobo, Yetunde

2017-07-01

Guided by the life-course perspective, this study contributes to the family caregiving, aging, and disability literature by examining the daily experiences of three types of family caregivers in midlife and late adulthood. A sample of 162 caregivers from the National Survey of Midlife in the United States study completed interviews, questionnaires, and a Daily Diary Study. Multilevel models showed the patterns of daily time use did not differ by caregiver types. Caregivers of sons/daughters with developmental disabilities (DD) experienced more daily stressors than caregivers of parents with health conditions (HC) and caregivers of spouses with HC. Unmarried caregivers of sons/daughters with DD reported spending more time on daily leisure activities and exhibited greater daily stressor exposure than other family caregivers. Age did not moderate the associations between caregiver types and daily experiences. Findings highlight the important consideration of the caregivers' characteristics to better determine the quality of their daily experiences in midlife and late adulthood.

Perceived control and communication about sex: a study of South African families.

PubMed

Goodnight, Bradley; Salama, Christina; Grim, Elizabeth C; Anthony, Elizabeth R; Armistead, Lisa; Cook, Sarah L; Skinner, Donald; Toefy, Yoesrie

2014-01-01

Caregiver-youth communication about sex protects youth against HIV/AIDS, and caregivers who believe that sex knowledge is important are more likely to talk to their youth about sex. However, caregivers who experience barriers to communication about sex may not talk to their youth about sex even if the caregiver believes that sex education is important. The Theory of Planned Behaviour predicts that an actor has perceived control is necessary for behavioural change. This study therefore hypothesised that caregivers' perceived control moderates the relationship between caregiver attitudes about youth sex knowledge and caregiver-youth communication about sex. Results from a sample of 99 female South African caregivers of adolescent (10-14 year old) youth supported our hypothesis, indicating that caregiver attitudes about providing youth with sex knowledge positively predict communication about sex only when caregivers have perceived control. This finding illustrates the importance of perceived control in predicting caregiver-youth communication, and therefore has implications for family-based interventions aimed at improving caregiver-youth communication about sex.

Stigma, disclosure, and depressive symptoms among informal caregivers of people living with HIV/AIDS.

PubMed

Mitchell, Mary M; Knowlton, Amy

2009-08-01

Informal care receipt is associated with better HIV treatment outcomes among patients vulnerable to treatment failure. Yet, informal caregiving can be highly stressful, leading to distress and cessation of caregiving. Research on factors contributing to informal caregivers' psychological distress may advance our understanding of how to improve caregivers' well-being and sustained HIV caregiving for a vulnerable population. We examined relationships among caregiver stigma, disclosure, and depressive symptoms in a cross-sectional sample of 207 informal caregivers of people living with HIV/AIDS (PLWHAs) in Baltimore, Maryland. Caregivers were primarily African American, low-income, urban adults participating in the Action, Resources, and Knowledge (ARK) study (2003-2005), which recruited urban PLWHAs and their main supporters. Results indicated that among caregivers, HIV caregiving-related stigma was associated with more depressive symptoms, while disclosure of caregiving status was associated with fewer symptoms. We also explored the buffering effect of disclosure in the relationship between stigma and depressive symptoms. Results indicated that among those who reported greater stigma, there was a significant decrease in depressive symptoms as the number of disclosures increased. In contrast, participants who indicated lower stigma had consistently fewer depressive symptoms regardless of number of disclosures. These results suggest the need for interventions to address high levels of depressive symptoms among informal HIV caregivers, particularly those who report greater caregiving stigma and less disclosure of their caregiver status. In addition, future research should examine these relationships further using longitudinal data from informal caregivers and their care recipients.

Evaluative and Experienced Well-being of Caregivers of Parents and Caregivers of Children.

PubMed

Hammersmith, Anna M; Lin, I-Fen

2016-06-02

Informal caregiving is an important source of support for aging parents and children. Yet the timing and nature of caring for parents versus children may result in different levels of well-being. Despite extensive studies on the well-being of caregivers of parents and of children, it remains elusive as to how evaluative and experienced well-being vary by caregiver type. Using data from the 2012 and 2013 rounds of the American Time Use Survey, we examined how 216 caregivers of parents and 1,989 caregivers of children reported their evaluative well-being (life satisfaction) and experienced well-being (happiness, meaning, pain, sadness, stress, and tiredness). Caregivers of parents reported lower evaluative and experienced well-being than caregivers of children. The association between caregiver type and life satisfaction dissipated, whereas the associations of caregiver type with happiness, meaning, and sadness persisted after accounting for caregivers' demographic characteristics, socioeconomic resources, and time intensity. Experienced well-being appears to be more sensitive than evaluative well-being in detecting differences in well-being between these two types of caregivers. Given that the caregivers of parents do not receive the same level of institutional support as caregivers of children, social policies should aim to provide caregivers of parents with additional support. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Exploring conflict between caregiving and work for caregivers of elders with dementia: a cross-sectional, correlational study.

PubMed

Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Tsai, Wen-Che; Yang, Pei-Shan; Yao, Grace

2013-05-01

To report the moderating effects of work-related conditions and interactive family-care-giving variables, including mutuality and preparedness, on caregiver role strain and mental health for family caregivers of patients with dementia. Few studies have examined the interrelationships among caregivers' working conditions, care-giving dynamics and caregiver well-being. Cross-sectional, correlational study. Data were collected by self-completed questionnaires from 176 primary family caregivers of patients with dementia in Taiwan from May 2005-January 2006. Caregiver role strain and mental health were analysed by multiple regressions using a hierarchical method to enter independent variables and two- and three-way interaction terms after controlling for caregiver age and gender, employment status, and work flexibility and the simple effect of each independent variable. More preparedness was associated with less role strain for family caregivers with less work/care-giving conflict. More care-giving demand was associated with poorer mental health only for caregivers with low work/care-giving conflict and with average and low preparedness, but not high preparedness. For family caregivers with less work/care-giving conflict, more preparedness decreased role strain and maintained mental health even when care-giving demand was high. These results provide a knowledge base for understanding complex family caregiver phenomena and serve as a guide for developing interventions. Future studies with longitudinal follow-ups are suggested to explore actual causal relationships. © 2012 Blackwell Publishing Ltd.

Characteristics and Correlates of Caregivers' Perceptions of Their Family Members' Memory Loss.

PubMed

Yu, Hairong; Lingler, Jennifer H; Sereika, Susan M; Erlen, Judith A

Understanding caregiver's perceptions of their family member's memory loss is a necessary step in planning nursing interventions to detect and address caregiver burden. The purpose of this study was to characterize caregivers' perceptions of their family members' memory loss and identify potential correlates within Leventhal's common sense model (CSM). This secondary analysis used baseline data from a larger randomized controlled trial. Patients with memory loss and their caregivers (N = 83 dyads) from the community were included. The adapted Brief Illness Perception Questionnaire (BIPQ) assessed caregivers' illness perceptions. Eight additional instruments measured correlates within the CSM. Responses were described; multiple linear regression was used to predict BIPQ dimension scores, and logistic regression was used to predict dichotomized BIPQ scores. Most caregivers were female, White, and spouses of the patients; they reported a range of perceptions on the nine BIPQ dimensions. Patients' cognitive function consistently emerged as a significant correlate of caregivers' illness perceptions, explaining the most variance in caregivers' perceived consequences, identity, and treatment control (p < .01). Caregivers' reactions to patients' behavioral symptoms and caregivers' trait anxiety were associated with perceived illness coherence (p < .01). Caregivers with higher severity of daily hassles and White caregivers perceived that their family members' memory loss would last longer (p < .001). Caregivers' perceptions of family members' memory loss varied; distinct dimensions of caregivers' illness perception were associated with a range of clinical and psychosocial factors. This exploratory study demonstrates the complexity of applying the CSM to caregivers of persons with memory loss.

Moving beyond caregiver burden: identifying helpful interventions for family caregivers.

PubMed

Sorrell, Jeanne M

2014-03-01

Family members serving as informal caregivers for loved ones often experience physical, psychological, emotional, social, and financial consequences that can be conceptualized as caregiver burden. As the number of older adults in our society continues to increase, there will be even more demand for family caregivers. It is important to move beyond a focus on the statistics and characteristics of caregiver burden and identify helpful interventions to reduce this burden. Interventions that decrease caregiver burden can enable family caregivers to delay placement of the individual in an institutional setting and improve quality of life for both the caregiver and care recipient. Copyright 2014, SLACK Incorporated.

Association of Filial Responsibility, Ethnicity, and Acculturation Among Japanese American Family Caregivers of Older Adults.

PubMed

Miyawaki, Christina E

2017-03-01

Challenges of filial caregiving practices by 1st-generation immigrants due to differences in caregiving values between their home and host countries are well documented. This study explored the filial responsibility of later generation Japanese American caregivers of older adults. Acculturation and filial responsibility were measured using the Suinn-Lew Asian Self Identity Acculturation scale and Filial Values Index, respectively. A qualitative interview guide was developed using Gordon's assimilation theory, and 21 caregivers ( M age = 68 years, 86% female, seven in each generation) were interviewed. Despite the 3rd-generation caregivers' high acculturation level, their filial responsibility scores remained high. Qualitative interviews also revealed later generation caregivers' strong filial responsibility and continued caregiving involvement. Unexpectedly, caregivers' own future expectancy of care included placement in mainstream residential facilities rather than ethnic-specific settings. Findings point to the need to develop caregiver services that consider later generation caregivers' culture and level of assimilation.

Vulnerabilities and caregiving in an ethnically diverse HIV-infected population.

PubMed

Moody, Anissa L; Morgello, Susan; Gerits, Pieter; Byrd, Desiree

2009-04-01

The current study aimed to identify the primary informal caregivers of a group of urban HIV+ adults (n = 250) and to determine relationships between demographic, medical, and substance use characteristics and caregivers types. Reported caregiver types included 36.8% familial, 22.4% significant other, and 22.8% institutional or other caregiver relationships. The remaining 18% of the sample reported having no individual that rendered informal care. Factors associated with the absence of an informal caregiver included African American race and low education. Hispanic participants reported the highest frequency of family caregivers while participants with a history of substance disorder were less likely to identify a significant other as a caregiver. This study demonstrates the evolving nature of informal caregiving in HIV, race- and education-related disparities in the absence of primary caregivers, and the importance of sociocultural and demographic factors in the study of HIV caregiving.

Caregiving-related needs of family caregivers of older Singaporeans.

PubMed

Ajay, Shweta; Østbye, Truls; Malhotra, Rahul

2017-03-01

To describe the extent and correlates of caregiving-related needs among family caregivers of Singaporeans aged 75+ with ≥1 activity of daily living limitations (care-recipients). National survey data of 1181 care-recipient/caregiver dyads were used. Caregiver's report (yes/no) of 16 needs was assessed. Care-recipient and caregiver correlates of each need were determined through logistic regression analysis. Caregiving-related needs were expressed by 42.3% caregivers. The most commonly reported need was keeping care-recipient safe at home (24.5%). Needs concerned with caring for care-recipients were more frequent than those concerned with the caregiver's own needs. The most frequent correlate was care-recipient's extent of mood impairment (associated with 13 needs). Caregivers should not neglect themselves when engaging in care provision. Families and service providers should explore whether reported lack of needs reflects limited awareness and/or under-reporting. © 2017 AJA Inc.

Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap.

PubMed

Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet

2017-03-01

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

Predicting desire for institutional placement among racially diverse dementia family caregivers: the role of quality of care.

PubMed

Sun, Fei; Durkin, Daniel W; Hilgeman, Michelle M; Harris, Grant; Gaugler, Joseph E; Wardian, Jana; Allen, Rebecca S; Burgio, Louis D

2013-06-01

Literature on institutionalization of patients with dementia has not considered the role of caregivers' quality of care, which encompasses caregivers' exemplary care (EC) behaviors and caregivers' potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between caregiving stressors and caregiver desire to institutionalize (DTI) a patient with dementia. A sample of 612 family caregivers from diverse racial/ethnic backgrounds was drawn from the baseline data of the Resources for Enhancing Alzheimer's Caregiver Heath (REACH II) project. Multiple mediator models were run using Preacher and Hayes asymptotic and resampling strategies to assess direct and indirect effects of caregiver stressors (daily care bother, behavioral bother, and burden) on caregiver desire to institutionalize a patient with dementia. Overall, PHB was positively related to caregiver desire to institutionalize their care recipients. Specifically, PHB was found to mediate the relationship between caregiving stressors and DTI in the Caucasian and Latino groups, whereas only the mediation effect of EC was significant in the African American group. Caregivers' perceptions of quality of care helped explain their desire to institutionalize their care recipients with dementia. Including assessment of EC and PHB in clinical and social service settings is recommended for all ethnic groups. Interventions should facilitate EC behaviors among African American caregivers and address concerns of PHBs in Caucasian and Latino caregivers.

Influence of personality on depression, burden, and health-related quality of life in family caregivers of persons with dementia.

PubMed

Kim, Sun Kyung; Park, Myonghwa; Lee, Yunhwan; Choi, Seong Hye; Moon, So Young; Seo, Sang Won; Park, Kyung Won; Ku, Bon D; Han, Hyun Jeong; Park, Kee Hyung; Han, Seol-Heui; Kim, Eun-Joo; Lee, Jae-Hong; Park, Sun A; Shim, Yong S; Kim, Jong Hun; Hong, Chang Hyung; Na, Duk L; Ye, Byoung Seok; Kim, Hee Jin; Moon, Yeonsil

2017-02-01

Personality may predispose family caregivers to experience caregiving differently in similar situations and influence the outcomes of caregiving. A limited body of research has examined the role of some personality traits for health-related quality of life (HRQoL) among family caregivers of persons with dementia (PWD) in relation to burden and depression. Data from a large clinic-based national study in South Korea, the Caregivers of Alzheimer's Disease Research (CARE), were analyzed (N = 476). Path analysis was performed to explore the association between family caregivers' personality traits and HRQoL. With depression and burden as mediating factors, direct and indirect associations between five personality traits and HRQoL of family caregivers were examined. Results demonstrated the mediating role of caregiver burden and depression in linking two personality traits (neuroticism and extraversion) and HRQoL. Neuroticism and extraversion directly and indirectly influenced the mental HRQoL of caregivers. Neuroticism and extraversion only indirectly influenced their physical HRQoL. Neuroticism increased the caregiver's depression, whereas extraversion decreased it. Neuroticism only was mediated by burden to influence depression and mental and physical HRQoL. Personality traits can influence caregiving outcomes and be viewed as an individual resource of the caregiver. A family caregiver's personality characteristics need to be assessed for tailoring support programs to get the optimal benefits from caregiver interventions.

Caregiver burden mediates between caregiver's mental health condition and elder's behavioral problems among Japanese family caregivers.

PubMed

Honda, Ayumi; Abe, Yasuyo; Aoyagi, Kiyoshi; Honda, Sumihisa

2014-03-01

In Japan, the prevalence of depression has been reported to occur among 1 in 4 family caregivers. The purpose of this study was to investigate the self-rated burden associated with mental health conditions among caregivers. We studied 95 caregivers aged 38-87 years in a cross-sectional study. The General Health Questionnaire (GHQ-12) score of 4 or more was defined as poor mental health. The proportion of caregivers with poor mental health was 24%. Caregivers with a high GHQ-12 score had the number of caregiver burdens increased by 2.5-fold compared to those with a low GHQ-12 score (p = 0.001). The proportion of caregivers with a high GHQ-12 score was significantly higher with an increasing number of behavioral problems among care recipients (p = 0.003). A mediational model was used to identify the underlying mechanism of the relationship between the number of behavioral problems and poor mental health in caregivers. Consequently, we found that mental health conditions in caregivers were associated with both the number of caregiver burdens and behavioral problems among care recipients. It is vital to provide support not only to the caregivers but also to their elderly relatives, paying particular attention to early identification of poor mental health in caregivers so as to administer effective interventions, and to offer useful advice concerning how to deal with behavioral problems.

Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving.

PubMed

Kent, Erin E; Rowland, Julia H; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O'Mara, Ann; Huss, Karen

2016-07-01

Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2-day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient-caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987-95. © 2016 American Cancer Society. © 2016 American Cancer Society.

Family-to-work spillover and appraisals of caregiving by employed women caring for their elderly parents in Japan

PubMed Central

SAKKA, Mariko; SATO, Iori; IKEDA, Mari; HASHIZUME, Hirofumi; UEMORI, Masayo; KAMIBEPPU, Kiyoko

2016-01-01

We examined the differences in family-to-work spillover between employed women who did and did not have caregiving responsibilities for elderly parents and the relationship between family-to-work spillover and negative and positive appraisals of caregiving using moderation analysis. A cross-sectional survey was conducted with middle-aged employed women (age ≥40 years) from four large companies. Negative and positive family-to-work spillover (FWNS and FWPS, respectively) and negative and positive appraisals of caregiving were measured. Data from 386 non-caregivers and 82 caregivers were analyzed using Fisher’s exact tests, Welch’s t-tests, and hierarchical multiple regression. Results showed that FWNS was higher in caregivers than in non-caregivers, while there was no significant difference in FWPS. Caregiver “fulfillment from the caregiving role” (a subscale of positive appraisal) buffered the effects of caregiver “feelings of social restriction” (a subscale of negative appraisal) on FWNS. On the other hand, caregiver “commitment to caregiving tasks” (another positive subscale) intensified the effects of “feelings of social restriction” on FWNS. However, there was no relationship between negative and positive appraisals of caregiving and FWPS. These findings suggest that both negative and positive appraisals of caregiving are important contributors to FWNS among employed women caring for their parents. PMID:26829970

A multinational review of recent trends and reports in dementia caregiver burden.

PubMed

Torti, Frank M; Gwyther, Lisa P; Reed, Shelby D; Friedman, Joëlle Y; Schulman, Kevin A

2004-01-01

This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.

Caregivers of older persons with multiple sclerosis: determinants of health-related quality of life.

PubMed

Buhse, Marijean; Della Ratta, Carol; Galiczewski, Janet; Eckardt, Patricia

2015-04-01

This study was conducted to determine which factors (clinical and demographic) are associated with mental and physical health-related quality of life (HRQOL) for caregivers of older persons with multiple sclerosis (MS). The Andersen's Healthcare Utilization Model guided this study. Knowledge of identified predictors of HRQOL may prompt nurses who care for persons with MS to address these issues and provide supportive care. A cross-sectional descriptive design was used to examine the relationship between patient with MS and caregiver clinical and demographic factors with caregiver physical and mental HRQOL. Patients with MS aged 60 years or older and their caregivers from four MS centers on Long Island, New York, self-selected into this study (n = 102). A caregiver survey was administered that collected demographic information and included validated questionnaires measuring HRQOL, caregiver burden, and caregiver perception of risk for neuropsychological impairment of patients with MS. Patient surveys collected demographic information and validated questionnaires measuring cognition, depression, and disability. Multivariate linear regression was used to examine patient and caregiver variables to explain caregiver physical and mental HRQOL. The caregivers in this study were older (mean age = 61 years) with existing comorbidities. We found that caregiver mental HRQOL was negatively associated with patient depression and, surprisingly, positively associated with caregiver burden and caregiver comorbidity of heart disease. Caregiver physical HRQOL was negatively associated with caregiver comorbidities of arthritis and diabetes and lower household income. The challenges older caregivers face when caring for older persons with MS have been shown to affect their mental and physical QOL. Nurses who care for older patients with MS will increasingly rely on older caregivers to provide patient-centered interventions. This descriptive study, based on the Anderson theoretical model, provides insight on factors impacting older caregivers' HRQOL. Further research is necessary to elucidate the types of interventions that support them as they care for older patients with MS.

Caregiver burden for informal caregivers of patients with dementia: A systematic review.

PubMed

Chiao, C-Y; Wu, H-S; Hsiao, C-Y

2015-09-01

Dementia is an irreversible illness. The caregiver is expected to assume increased responsibility as the condition of the person with dementia declines. It is important to explore the factors constituting caregiver burden on the informal caregivers of people with dementia. The purpose of this article is to identify the factors constituting caregiver burden on the informal caregivers of people with dementia living in the community. A systematic review of the four databases, including PubMed, PsycINFO, CINAHL and the Cochrane Library, was carried out to access relevant articles published between 2003 and 2012. Twenty-one articles met the inclusion criteria of this study. Behavioural problems or psychological symptoms were the primary factor of the person with dementia that is associated with caregiver burden. Caregiver socio-demographical factors and psychological factors were the two primary factors of the caregiver burden. Several results of this study were based on studies that had their own limitations. Furthermore, the concept of caregiver 'burden' was not clearly defined in some of the studies; instead, the term was broadly defined. Factors of caregiver burden in regard to people with dementia living in the community were clarified in this review study. By identifying all of the factors, healthcare professionals can deliver appropriate assistance to relieve caregiver burden and improve the quality of caregiving for people with dementia. It is important to identify the factors of the burden on the caregivers of people with dementia living in the community to prevent early nursing home placement, deterioration of caregiver's health and reduce the adverse health outcomes for care recipients. A health-related policy should be formulated to help informal caregivers receive more professional assistance. Training opportunities should be provided for family caregivers to reduce the impact of caregiving on the delivery of effective care. © 2015 International Council of Nurses.

Psychometric properties of the Zarit Caregiver Burden Interview administered to caregivers to patients with Duchenne muscular dystrophy: a Rasch analysis.

PubMed

Landfeldt, Erik; Mayhew, Anna; Straub, Volker; Bushby, Katharine; Lochmüller, Hanns; Lindgren, Peter

2017-12-18

To explore the psychometric properties of the full 22-item English (UK and US) version of the Zarit Caregiver Burden Interview administered to caregivers to patients with Duchenne muscular dystrophy. Caregivers to patients with Duchenne muscular dystrophy from the United Kingdom and the United States, recruited through the TREAT-NMD network, completed the Zarit Caregiver Burden Interview online. The psychometric properties of the Zarit Caregiver Burden Interview were examined using Rasch analysis. A total of 475 caregivers completed the Zarit Caregiver Burden Interview. Model misfit was identified for 9 of 22 items (mean item fit residual 0.061, SD: 2.736) and 13 of 22 items displayed disordered thresholds. The overall item-trait interaction chi-square value was 499 (198 degrees of freedom, p < 0.001). The mean person fit residual was estimated at -0.213 (SD: 1.235). The Person Separation Index and Cronbach's α were estimated at 0.902 and 0.914, respectively. Item dependency was low and we found no significant differential item functioning by country or sex. Our Rasch analysis shows that the Zarit Caregiver Burden Interview fails to fully operationalize a quantitative conceptualization of caregiver burden among caregivers to patients with Duchenne muscular dystrophy from the United Kingdom and the United States. Further research is needed to understand the psychometric properties of the Zarit Caregiver Burden Interview in other populations and settings. Implications for Rehabilitation Duchenne muscular dystrophy is a terminal disease characterized by progressive muscle degeneration resulting in substantial disability and a significant burden on family caregivers. The Zarit Caregiver Burden Interview is one of the most widely applied measures of caregiver burden. Our Rasch analysis suggests that the Zarit Caregiver Burden Interview is not fit for purpose to measure burden in UK and US caregivers to patients with Duchenne muscular dystrophy. Clinicians and decision-makers should interpret Zarit Caregiver Burden Interview data from these populations with caution.

Quality of life in Chinese family caregivers for elderly people with chronic diseases.

PubMed

Xie, Hui; Cheng, Cheng; Tao, Yisheng; Zhang, Jie; Robert, Delprino; Jia, Jihui; Su, Yonggang

2016-07-06

Inadequate studies have been conducted in China to examine quality of life in family caregivers. Quality of life in family caregivers for elderly people with chronic diseases was evaluated, and the demographic and characteristic factors of both elderly people and their caregivers were explored. The 36-Item Short Form Health Survey (SF-36) was used to assess health-related quality of life in 407 family caregivers caring for elderly people with chronic diseases in six communities on the Mainland China. The explanatory variables included family caregivers' demographic and other caregiving variables related to eldercare. Descriptive statistics and multiple linear regression analysis were used in the data analysis, performed via SPSS 17.0. Mean SF-36 and physical and mental component scores were 66.14 ± 17.50, 70.06 ± 16.49, and 62.22 ± 18.51, respectively. The scores of caregivers' physical function and bodily pain were significantly higher, while the scores of caregivers' role limitations due to physical problems, general health, vitality, social function, mental health and role limitations due to emotional problems were significantly lower. Caregivers' ages, comorbidity, the perceived effects of caregiving on caregivers' social lives and elderly individuals' ages, marital status and Activities of Daily Living scores were significantly associated with the physical component score. In addition, caregivers' age, the affordability of the elderly person's healthcare expenses, the perceived effects of caregiving on caregivers' social lives, and elderly people's marital status and ADL scores were significantly associated with the mental component score. Family caregivers for elderly people with chronic diseases showed poorer mental and better physical well-being. Factors of both elderly people and their caregivers impact the caregivers' quality of life. These findings highlight the importance of addressing mental health of family caregivers, and of providing economical support and psychological care for them.

Informal caregiving burden and perceived social support in an acute stroke care facility.

PubMed

Akosile, Christopher Olusanjo; Banjo, Tosin Olamilekan; Okoye, Emmanuel Chiebuka; Ibikunle, Peter Olanrewaju; Odole, Adesola Christiana

2018-04-05

Providing informal caregiving in the acute in-patient and post-hospital discharge phases places enormous burden on the caregivers who often require some form of social support. However, it appears there are few published studies about informal caregiving in the acute in-patient phase of individuals with stroke particularly in poor-resource countries. This study was designed to evaluate the prevalence of caregiving burden and its association with patient and caregiver-related variables and also level of perceived social support in a sample of informal caregivers of stroke survivors at an acute stroke-care facility in Nigeria. Ethical approval was sought and obtained. Fifty-six (21 males, 35 females) consecutively recruited informal caregivers of stroke survivors at the medical ward of a tertiary health facility in South-Southern Nigeria participated in this cross-sectional survey. Participants' level of care-giving strain/burden and perceived social support were assessed using the Caregiver Strain Index and the Multidimensional Scale of Perceived Social Support respectively. Caregivers' and stroke survivors' socio-demographics were also obtained. Data was analysed using frequency count and percentages, independent t-test, analysis of variance (ANOVA) and partial correlation at α =0.05. The prevalence of care-giving burden among caregivers is 96.7% with a high level of strain while 17.9% perceived social support as low. No significant association was found between caregiver burden and any of the caregiver- or survivor-related socio-demographics aside primary level education. Only the family domain of the Multidimensional Scale of Perceived Social Support was significantly correlated with burden (r = - 0.295). Informal care-giving burden was highly prevalent in this acute stroke caregiver sample and about one in every five of these caregivers rated social support low. This is a single center study. Healthcare managers and professionals in acute care facilities should device strategies to minimize caregiver burden and these may include family education and involvement.

Between Stressors and Outcomes: Can We Simplify Caregiving Process Variables?

ERIC Educational Resources Information Center

Braithwaite, Valerie

1996-01-01

Examines Lawton, Kleban, Moss, Rovine, and Glickman's (1989) caregiving appraisal through a principal components analysis and varimax rotation of a data set based on in-depth quantitative interviews with 144 caregivers. Five caregiving appraisal dimensions are identified: task load caregiving, dysfunctional caregiving, intimacy and love, social…

The Relationship between Mastery and Depression among Japanese Family Caregivers

ERIC Educational Resources Information Center

Schreiner, Andrea S.; Morimoto, Tomoko

2003-01-01

The present study examined the relationship between caregiver mastery and depressive symptoms among family stroke caregivers in western Japan (N = 100). Family caregivers were identified from a sample of rehabilitation hospitals; participation rate was 100 percent for all eligible caregivers. Care-givers with high mastery were found to have…

Family caregivers' health in connection with providing care.

PubMed

Erlingsson, Christen L; Magnusson, Lennart; Hanson, Elizabeth

2012-05-01

Our aim was to investigate connections between Swedish family caregivers' health and providing care for an ill relative by conducting a systematic search and synthesis of previous research. We analyzed 31 articles using first qualitative content analysis then hermeneutic analysis. Analysis resulted in three derived themes-sliding sideways into caregiving, caregiving in reciprocity, and caregiving in disintegration-and a main interpretation and conceptual model of Swedish family caregivers' health-caregiving in a sphere of beliefs. Results indicated that Swedish family caregivers' beliefs, experiences of reciprocity, or nonsupport, together with quality of interpersonal relationships and feelings of responsibility and guilt, have a profound impact on their health. These results point to the value and importance of nurses gaining an understanding of family caregivers' beliefs and experiences of reciprocity or nonsupport to effectively promote family caregivers' health.

Correlates of caregiver burden among family caregivers of older Korean Americans.

PubMed

Casado, Banghwa; Sacco, Paul

2012-05-01

Despite the rapid growth of older ethnic minority populations, knowledge is limited about informal caregiving among these groups. Our aim was to identify correlates of caregiver burden among family caregivers of older Korean Americans (KAs). A cross-sectional survey collected data from 146 KA caregivers. Using a modified stress-appraisal model, we examined background and context characteristics (caregiver sex, relationship to care recipient, college education, English proficiency, time in caregiving role, family support network, friend support network), a primary stressor (care recipient functional dependency), a primary appraisal (caregiving hours), and resources (family agreement, care management self-efficacy, service use self-efficacy) as potential correlates of caregiver burden. Interactions between the primary stressor, primary appraisal, and resources were also tested. Being female and the care recipient's spouse were associated with higher burden. Conversely, a larger family support network, greater family agreement, and greater care management self-efficacy were associated with lower burden. A significant interaction was detected between functional dependency and family agreement; higher levels of family agreement moderated the association between care recipient functional dependency and caregiver burden. Interventions to reduce caregiver burden in KA caregivers may be more effective if they include approaches specifically designed to build family support, improve family agreement, and increase caregivers' self-efficacy.

Caregiver burden and correlates among caregivers of children and adolescents with psychiatric morbidity: a descriptive cross sectional study.

PubMed

Molebatsi, Keneilwe; Ndetei, David M; Opondo, Phillip R

2017-09-01

To determine levels and correlates of caregiver burden among caregivers of children and adolescents with psychiatric morbidity. Over a period of four months, a total of 252 caregivers of children and adolescents with psychiatric morbidity were recruited. Data on socio-demographic factors, psychiatric morbidity among caregivers, and level of caregiver burden was collected using a researcher-designed socio-demographic questionnaire, Mini International Neuropsychiatric Interview, and Zarit burden interview, respectively. Data was analysed using statistical package for social sciences (SPSS) version 21. Females (n = 211, 83.7%) and mothers (n = 182, 72.2%) accounted for the majority of the study participants. The majority of caregivers reported moderate to severe caregiver burden; (n = 100, 39.7%). Being single or separated (B = -6.91, p = 0.001, β = -0.18) and presence of psychiatric morbidity (B = 7.44, p = 0.009, β = 0.22) in the caregiver significantly contributed to the high levels of caregiver burden. Caregivers of children and adolescents with psychiatric morbidity suffer high levels of caregiver burden. A multidisciplinary approach to management of children with psychiatric morbidity to address challenges faced by the caregivers may alleviate the burden; thereby improving clinical outcomes of children and adolescents with psychiatric morbidity.

Health Behaviors Among Baby Boomer Informal Caregivers

PubMed Central

Hoffman, Geoffrey J.; Lee, Jihey; Mendez-Luck, Carolyn A.

2012-01-01

Purpose of the Study: This study examines health-risk behaviors among “Baby Boomer” caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state’s non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal caregivers and 12,941 non-caregivers. Logistic regression models were estimated separately for four individual health-risk behaviors—smoking, sedentary behavior, and regular soda and fast-food consumption—as well as a global health-risk measure. Results: Controlling for psychological distress and personal characteristics and social resources such as age, gender, income and education, work and marital status, and neighborhood safety, caregivers had greater odds than non-caregivers of overall negative health behavior and of smoking and regular soda and fast-food consumption. We did not observe significant differences in odds of negative behavior related to stress for spousal caregivers and caregivers in the role for longer periods of time or those providing more hours of weekly care compared with other caregivers. Implications: Our study found evidence that Baby Boomer caregivers engage in poor health behaviors that are associated with exposure to caregiving. Baby Boomer caregivers may be at risk for certain behavioral factors that are associated with disability and chronic illness. PMID:22391873

Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study.

PubMed

Mroz, Emily L; Poulin, Michael J; Grant, Pei C; Depner, Rachel M; Breier, Jennifer; Byrwa, David J; Wright, Scott T

2018-03-01

Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction. A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period. An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health. High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

Certified Nursing Assistants Balancing Family Caregiving Roles: Health Care Utilization Among Double- and Triple-Duty Caregivers.

PubMed

DePasquale, Nicole; Bangerter, Lauren R; Williams, Jessica; Almeida, David M

2016-12-01

This study examines how certified nursing assistants (CNAs) balancing family caregiving roles-child care (double-duty child caregivers), elder care (double-duty elder caregivers), and both child and elder care (triple-duty caregivers)-utilize health care services relative to nonfamily caregiving counterparts (formal-only caregivers). A sample of 884 CNAs from the Work, Family and Health Study was drawn on to assess the number of acute care (i.e., emergency room or urgent care facility) and other health care (i.e., outpatient treatment or counseling) visits made during the past 6 months. Double-duty elder and triple-duty caregivers had higher acute care utilization rates than formal-only caregivers. CNAs with and without family caregiving roles had similar rates of other health care visits. CNAs providing informal care for older adults have higher acute care visit rates. Given the increasing need for family caregivers and the vital importance of the health of the nursing workforce for the health of others, future research on how double- and triple-duty caregivers maintain their health amidst constant caregiving should be a priority. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

From serving in the military to serving loved ones: unique experiences of older veteran caregivers.

PubMed

Monin, Joan K; Levy, Becca R; Pietrzak, Robert H

2014-06-01

We examined whether older caregiving veterans differ from noncaregiving veterans in terms of health and psychosocial factors and how these factors and caregiving aspects (i.e., hours, relationship type) relate to caregiving strain and reward. We also evaluated two hypotheses: (1) combat exposure provides protection from emotional caregiving strain, and (2) grandparenting is particularly rewarding. We used a cross-sectional web survey of a nationally representative sample of older veterans in the United States. Data were drawn from the National Health and Resilience in Veterans Study, and participants were 2,025 U.S. veterans aged 60 or older (mean: 71.0; SD: 7.1; range: 60-96). Participants completed measures of caregiving status, sociodemographic characteristics, combat exposure, physical and mental health, cognitive status, and psychosocial characteristics. Caregivers reported caregiving hours, caregiving type, emotional and physical strain, and reward. A total of 20.4% of U.S. older veterans are caregivers. As predicted, among the veteran caregivers, (1) combat exposure was associated with less emotional caregiving strain (odds ratio [OR]: 0.57), and (2) grandparenting was associated with increased perception of caregiving reward (OR: 5.28). Resilience was negatively associated with physical strain, whereas depressive symptoms were associated with greater emotional strain; gratitude, happiness, and social support were additionally associated with greater reward. Caregivers were more likely to be married and highly educated than noncaregivers but did not differ with respect to health or psychosocial characteristics. One in five older U.S. veterans is a caregiver. Older veterans' combat exposure may decrease the emotional demands of caregiving, and grandparenting is perceived as particularly rewarding. Results suggest that older veterans are an important caregiving resource that deserves tailored resources. Copyright © 2014 American Association for Geriatric Psychiatry. All rights reserved.

Family Caregiver Factors Associated with Unmet Needs for Care of Older Adults.

PubMed

Beach, Scott R; Schulz, Richard

2017-03-01

To examine caregiver factors associated with unmet needs for care of older adults. Population-based surveys of caregivers and older adult care recipients in the United States in 2011. 2011 National Health and Aging Trends Study and National Study of Caregiving. Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366). Disabled care recipient reports of unmet needs for care in the past month with activities of daily living (ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living (IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects. Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P < .001). Unmet ADL needs are prevalent among older adults with family caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Depressive symptoms predict cancer caregivers' physical health decline.

PubMed

Shaffer, Kelly M; Kim, Youngmee; Carver, Charles S; Cannady, Rachel S

2017-11-01

Cancer caregiving has been associated with worsening health among caregivers themselves, yet demographic and psychosocial predictors of their long-term health decline are less known. This study examines changes in caregivers' physical health 2 to 8 years after their family members' cancer diagnosis and prospective predictors of that change. Caregivers (n = 664; mean age, 53.2 years) participated in a nationwide study at 2 (T1), 5 (T2), and 8 (T3) years after their family members' cancer diagnosis. Physical health (12-item Medical Outcomes Study Short Form Health Survey Physical Component Scale) was assessed T1 through T3 as outcome. Predictors were self-reported at T1, including caregiver demographics (age, sex, education, income, relationship to patient, and employment status), patient cancer severity (from medical records), and caregiver psychosocial factors (caregiving stress, caregiving esteem, social support, and depressive symptoms). Latent growth modeling tested predictors of caregivers' initial physical health and their physical health change across time. At T1, caregivers reported slightly better physical health than the US population (M = 51.22, P = .002), which declined over the following 6 years (M slope = -0.27, P < .001). All demographic factors, patient cancer severity, and T1 caregiving stress were related to caregivers' initial physical health (P ≤ .03). Higher depressive symptoms were unrelated to caregivers' initial physical health, but were the only significant predictor of caregivers' more rapid physical health decline (B = -0.02, P = .004). Findings highlight the unique contribution of caregivers' depressive symptoms to their physical health decline. Assessing and addressing depressive symptoms among caregivers early in the cancer survivorship trajectory may help to prevent premature health decline among this important yet vulnerable population. Cancer 2017;123:4277-4285. © 2017 American Cancer Society. © 2017 American Cancer Society.

Unmet Needs of Caregivers of Patients Referred to a Dementia Care Program

PubMed Central

Jennings, Lee A.; Reuben, David B.; Evertson, Leslie Chang; Serrano, Katherine S.; Ercoli, Linda; Grill, Joshua; Chodosh, Joshua; Tan, Zaldy; Wenger, Neil S.

2014-01-01

Background/Objectives Caregiver strain and low self-efficacy for managing dementia-related problems are common among those caring for patients with dementia, but the level of unmet need and relation to provider type has not been well characterized. Design Cross-sectional observational cohort Setting Urban academic medical center Participants Caregivers of community-dwelling adults with dementia referred to the program Measurements Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ-9) about themselves, the Modified Caregiver Strain Index, the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress, and a 9-item caregiver self-efficacy scale developed for the study. Results Of 307 patient and caregiver dyads surveyed over a one year period, 32% of caregivers reported confidence in managing dementia-related problems, 19% knew how to access community services to help provide care, and 28% agreed the patient’s provider helped them work through dementia care problems. Thirty-eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of patients referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self-efficacy did not differ. Low caregiver self-efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for a patient with more severe behavioral symptoms. Conclusion Most caregivers perceived inadequate support from the patient’s provider in managing dementia-related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of patients with dementia and their caregivers. PMID:25688604

The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study.

PubMed

Qiu, Xichenhui; Sit, Janet W H; Koo, Fung Kuen

2018-01-01

To explore and describe the caregiving experiences of Chinese stroke caregivers. Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture. A qualitative descriptive design was used. In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed. Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health. Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways. Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds. © 2017 John Wiley & Sons Ltd.

Caregiver Experience During Patients’ Advanced Chronic Illness and Last Year of Life

PubMed Central

Sautter, Jessica M.; Tulsky, James A.; Johnson, Kimberly S.; Olsen, Maren K.; Burton-Chase, Allison M.; Lindquist, Jennifer Hoff; Zimmerman, Sheryl; Steinhauser, Karen E.

2014-01-01

Background/Objectives Caregivers of patients with serious illness endure significant burden, yet it is not clear at what stage of advanced illness patient and caregiver needs are greatest. This study compared prevalence and predictors of caregiver esteem and burden during two different stages of patients’ illnesses – advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham VA Medical Centers. Participants Patients living with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n=62) or end-of-life (n=62) patient-caregiver dyads. Measurements We measured caregiver experience monthly with the Caregiver Reaction Assessment (CRA), which includes caregiver esteem and 4 domains of burden: schedule, health, family, and finances. Results During both chronic-illness and end-of-life, high caregiver esteem was almost universal (95%); health, family, and financial burden were endorsed by <25% of the sample. Schedule burden was the most prevalent form of burden and was experienced more frequently by end-of-life caregivers (58%) than the chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over one year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over one year and similar among caregivers of patients in the last year of life and those further upstream in advanced illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness. PMID:24803020

Feeding styles of caregivers of children 6-23 months of age in Derashe special district, Southern Ethiopia.

PubMed

Wondafrash, Mekitie; Amsalu, Tseganeh; Woldie, Mirkuzie

2012-03-23

Apart from basic determinants, appropriate child care practices are important in prevention of growth faltering and undernutrition. Providing safe and appropriate quality complementary foods is crucial to child growth and development. However, some children in low-income communities grow normally mainly due to proper caregiver feeding behaviors. Hence, the objective of this study was to determine caregivers' feeding styles as well as to indentify predictors in Derashe special district, Southern Ethiopia. A community based cross-sectional study design was employed in the seven randomly selected Kebeles (smallest administrative unit) of Derashe special district. A total of 826 caregivers provided data pertaining to socio-demographic variables. However, 764 caregivers had complete data for the outcome variable (caregiver feeding style). A multistage stratified sampling technique was used to identify study subjects. An adapted Caregiver's Feeding Styles Questionnaire (CFSQ) was used to gather information about caregivers' feeding styles. Multivariate multinomial logistic regression was employed to identify predictors of caregivers' feeding style. The majority (80.6%) of caregivers were biological mothers. Nearly seventy-six percent of the caregivers practiced a responsive feeding style. Caregivers other than the biological mother favoured a laissez-faire feeding style, while caregivers residing in rural Kebeles were more responsive. Caregivers with a breastfeeding frequency of more than eight times predicted both laissez-faire (RRR = 1.88; 95% CI = 1.03-3.41) and controlling (RRR = 1.7; 95% CI = 1.02-2.85) feeding styles as compared to responsive feeding. Responsive feeding was the commonest style practiced by the caregivers. Many of the caregivers who were rural residents and birth parents have been responsive in child feeding. The instruments needed to be validated in the Ethiopian context and an additional prospective study based on direct observation of caregiver-child interactions is recommended.

What Behavioral and Psychological Symptoms of Dementia Affect Caregiver Burnout?

PubMed

Hiyoshi-Taniguchi, Kazuko; Becker, Carl B; Kinoshita, Ayae

2018-01-01

Patients' irritability and aggression have been linked to caregiver depression, but the behaviors that most burden caregivers are not yet definitively identified. This study examines the connection between behavioral and psychological symptoms of dementia (BPSD) and the burnout of caregivers caring for home-dwelling elders with dementia symptoms in Japan. 80 Japanese rural and urban family caregivers completed detailed questionnaires about their experiences in caring for demented family members. We statistically analyzed the results for correlations between types of dementia, Pines Burnout, and Caregiver Distress. BPSD symptom severity significantly correlated with caregiver distress. The dementia symptoms most strongly correlated with caregiver burnout were: aggression, irritability, abnormal motor behavior, and hallucinations. Among the commonest symptoms, apathy, anxiety, and depression did not seriously aggravate caregiver burnout. Caregivers displayed higher burnout facing agitation/aggression, irritability, aberrant motor behavior, and hallucinations. Caregivers' reported distress was surprisingly dissimilar to their burnout scores; patients' delusions and anxiety led to higher distress reporting but not to burnout. Advance diagnosis of BPSD symptoms should be helpful to support nurses and caregivers of dementia patients. Particular support should be considered for caregivers and nurses of patients expressing aggression, irritability, abnormal motor behavior, and hallucination.

Caregiver life satisfaction: relationship to youth symptom severity through treatment.

PubMed

Athay, M Michele

2012-01-01

This study utilized the Satisfaction with Life Scale to investigate the life satisfaction of caregivers for youth receiving mental health services (N = 383). Specifically, this study assessed how caregiver life satisfaction relates to youth symptom severity throughout treatment. Hierarchical linear modeling with a time-varying covariate was used to estimate the linear trajectory of caregiver life satisfaction and how it relates to youth symptom severity as rated by caregivers, youth, and clinicians. Results found initial caregiver life satisfaction was inversely related to caregiver and clinician rated youth symptom severity. In addition, subsequent caregiver life satisfaction demonstrated a small but significant relationship to changes in youth symptom severity during treatment where a decrease in youth symptoms corresponded to an increase in caregiver life satisfaction, and vice versa. Caregiver background characteristics related to higher life satisfaction included being (a) married, a birth parent, and younger than 40 years old, and (b) having the absence of previous diagnoses of an emotional, behavioral, or substance use disorder. Despite significant change over time, caregivers of clinically referred youth demonstrated low levels of life satisfaction throughout youth treatment. Given the bidirectional influences on one another, tending to the well-being of caregivers may positively influence both caregivers and youths.

Caregiver self-efficacy, ethnicity, and kinship differences in dementia caregivers.

PubMed

Depp, Colin; Sorocco, Kristen; Kasl-Godley, Julia; Thompson, Larry; Rabinowitz, Yaron; Gallagher-Thompson, Dolores

2005-09-01

The authors sought to determine the effect of kinship status (daughters versus wives) and ethnicity (Hispanic/Latino versus Caucasian) on self-efficacy to perform tasks relevant to caregiving in a sample of family caregivers for people with memory problems. Baseline data were collected from 238 female caregivers who participated in an intervention program. Ethnic and kin relationship groups were compared on measures of caregiver self-efficacy, acculturation within the Hispanic/Latino sample, and the relationship of self-efficacy to key outcome variables. Hispanics/Latinos reported higher self-efficacy on two of three self-efficacy subscales (Responding to Disruptive Behaviors and Controlling Negative Thoughts About Caregiving). Daughters reported higher self-efficacy on all three self-efficacy scales. Among Hispanics/Latinos, acculturation did not relate strongly to self-efficacy. Caucasian and spousal caregivers appeared to make more generalized appraisals about caregiving. Higher self-efficacy among Hispanic/Latino caregivers may relate to cultural values about caregiving and/or ethnic differences in appraisal. Wives may be more at risk for low self-efficacy, which may relate to greater role frustration and distress. This study highlights the heterogeneity among caregivers in their experience of caregiving.

Hidden Heroes: America's Military Caregivers - Executive Summary.

PubMed

Ramchand, Rajeev; Tanielian, Terri; Fisher, Michael P; Vaughan, Christine Anne; Trail, Thomas E; Epley, Caroline; Voorhies, Phoenix; Robbins, Michael; Robinson, Eric; Ghosh-Dastidar, Bonnie

2014-01-01

While much has been written about the role of caregiving for the elderly and chronically ill and for children with special needs, little is known about "military caregivers"-the population of those who care for wounded, ill, and injured military personnel and veterans. These caregivers play an essential role in caring for injured or wounded service members and veterans. This enables those for whom they are caring to live better quality lives, and can result in faster and improved rehabilitation and recovery. Yet playing this role can impose a substantial physical, emotional, and financial toll on caregivers. This article distills a longer report, Hidden Heroes: America's Military Caregivers , which describes the results of a study designed to describe the magnitude of military caregiving in the United States today, as well as to identify gaps in the array of programs, policies, and initiatives designed to support military caregivers. Improving military caregivers' well-being and ensuring their continued ability to provide care will require multifaceted approaches to reducing the current burdens caregiving may impose, and bolstering their ability to serve as caregivers more effectively. Given the systematic differences among military caregiver groups, it is also important that tailored approaches meet the unique needs and characteristics of post-9/11 caregivers.

Physiological and functional consequences of caregiving for relatives with dementia

PubMed Central

Fonareva, Irina; Oken, Barry S.

2014-01-01

Background Chronic stress negatively affects health and well-being. A growing population of informal dementia caregivers experience chronic stress associated with extraordinary demands of caring for a relative with dementia. This review summarizes physiological and functional changes due to chronic dementia caregiver stress. Methods A literature search for papers assessing effects of dementia caregiving was conducted focusing on publications evaluating differences between caregivers and non-caregivers in objective measures of health and cognition. Results The review identified 37 studies describing data from 4145 participants including 749 dementia caregivers and 3396 non-caregiver peers. Objective outcome measures affected in dementia caregivers included markers of dyscoagulation, inflammation, and cell aging as well as measures of immune function, sleep, and cognition. Though diverse in designs, samples, and study quality, the majority of the studies indicated increased vulnerability of dementia caregivers to detrimental changes in health and cognition. Demographic and personality characteristics moderating or mediating effects of chronic stress in caregivers were also reviewed. Conclusions There is accumulating evidence that chronic dementia caregiver stress increases their vulnerability to disease and diminishes their ability to provide optimal care. Clinicians and society need to appreciate the extent of deleterious effects of chronic stress on dementia caregiver health. PMID:24507463

Challenges associated with transition to caregiver role following diagnostic disclosure of Alzheimer disease: a descriptive study.

PubMed

Ducharme, Francine; Lévesque, Louise; Lachance, Lise; Kergoat, Marie-Jeanne; Coulombe, Renée

2011-09-01

The prevalence of Alzheimer's disease is rising. The large number of new cases identified each year means that many new families will set upon a long trajectory of caring for a relative with dementia. Diagnostic disclosure of Alzheimer's disease marks the official transition to the caregiver role, yet this early period of the caregiver career have rarely been studied. Based on Meleis's theoretical framework for role transition, the objectives of this study were to document the characteristics of the caregiving context during the transition to the caregiver role following diagnostic disclosure of Alzheimer's disease and to compare these characteristics by caregiver gender and kinship tie to the relative. A descriptive design was used. Data were collected using standardized measures selected in accordance with the role transition theoretical framework. The sample recruited in Quebec (Canada) cognition clinics comprised 122 caregivers of an elderly relative diagnosed with Alzheimer's disease in the past nine months. Findings reveal the context of care to be marked by several challenges for caregivers. The majority of caregivers receives little informal support, has poor knowledge of available formal services, and has difficulty planning ahead for the relative's future care needs. Caregivers themselves report a lack of preparedness to provide care. Compared with men caregivers, women seem to have more problems controlling disturbing thoughts about their new caregiver role and to experience more family conflicts and psychological distress. Compared with offspring caregivers, spouse caregivers are less able to respond to the relative's disruptive behaviors, make less use of problem-solving strategies, and report fewer family conflicts. The challenges faced by caregivers during the transition to the caregiver role are sensitive to nursing interventions. Pro-active interventions from the outset of the caregiving career, such as early assessment of caregiver needs for support and of caregiver preparedness to provide care as well as early psycho-educational interventions, are essential to foster positive caregiver responses to the challenges of their new role. Copyright © 2011 Elsevier Ltd. All rights reserved.

Dyadic relational resources and role strain in family caregivers of persons living with dementia at home: A cross-sectional survey.

PubMed

Yang, Ching-Tzu; Liu, Hsin-Yun; Shyu, Yea-Ing Lotus

2014-04-01

Family caregivers of older persons with dementia face negative impacts such as heightened role strain due to care receivers' incremental loss of cognitive function. Dyadic relational resources were found to protect caregivers against negative caregiving outcomes while caring for cancer patients, but had not been explored in caregivers of patients with dementia. To explore whether the impact of caregiving demand/care receivers' cognitive functioning on caregiver role strain is moderated by dyadic relational resources. Cross-sectional correlational survey. The neurological clinics of a 3700-bed medical centre, neurological ward, and day care centre affiliated with a regional hospital in northern Taiwan. A convenience sample of 219 family caregivers and care receivers with dementia was enrolled, with 197 (90%) completing the study questionnaires. Data were collected from family caregivers' self-completed questionnaires from December 2010 to November 2011. We examined the moderating effects of caregiving demand/care receiver dementia severity and dyadic relational resources (mutuality, preparedness and predictability) on caregiving outcome (role strain) using hierarchical multiple regression analyses. Moderating effects were examined according to two- and three-way interaction terms in the regressions. We also explored the simple effect of each independent variable on role strain. The dyadic relational resources of mutuality and preparedness moderated the effects of caregiving demand on caregivers' role strain. That is, a high level of mutuality and preparedness protected caregivers from high levels of role strain, even when caregiving demand was high. Another important factor was a high level of predictability, which tended to decrease role strain. Finally, the association between care receiver cognitive functioning and caregiver role strain was influenced by the level of mutuality between caregiver and care receiver. More specifically, high levels of mutuality diminished role strain in caregivers of patients with mild dementia. Dyadic relational resources may moderate the effects of role strain. These findings suggest that these dyadic relational resources should be enhanced for family caregivers of patients with dementia to ease their caregiving role strain. Copyright © 2013 Elsevier Ltd. All rights reserved.

[Biopsychosocial approach to caregiving burden: Why should we care about caregivers' health?

PubMed

Leurs, Antoine; Trojak, Benoit; Ponavoy, Eddy; Bonin, Bernard; Chauvet-Gelinier, Jean-Christophe

2018-06-11

There are 11 million family caregivers in France and some estimates indicate that there will be 17 million in 2020. Caregiving is a source of chronic stress that requires adaptation and coping strategies. Caregiving may benefit the health of a caregiver with a positive coping style and altruistic goals. However, the caregiver's burden is frequently associated with negative effects in terms of biopsychosocial imbalance and medical conditions, with frequent anxiety and depression. The management of the caregiving burden starts with the recognition of health professionals - caregivers may benefit from consultation-liaison psychiatry and multidisciplinary medico-social strategies, in addition to constant support from their GPs. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

Psychosocial and Cognitive Health Differences by Caregiver Status Among Older Mexican Americans

PubMed Central

Mendez-Luck, Carolyn A.; Crist, Janice D.; Smith, Matthew Lee; Warre, Ruth; Ory, Marcia G.; Markides, Kyriakos

2012-01-01

This study identifies the risk and protective factors associated with informal caregiving by older (≥70 years) Mexican Americans and profiles caregiving arrangements. Overall, a greater number of informal caregivers (n = 92) were married and female. They also had higher physical functioning and better cognition than non-caregivers (n = 1,888) but fewer visited a physician regularly. Informal caregivers also showed an increased risk of depressive symptoms. A third of caregivers spent more than 20 h/day caregiving and the majority (84%) of care recipients were family members. In order to support the efforts of this disproportionately burdened caregiver group, increased social support and healthcare services are needed. PMID:22311331

From burden to depressive symptoms: the case of Chinese-Canadian family caregivers for the elderly.

PubMed

Lai, Daniel W L

2009-01-01

This study aims to understand the effect of caregiving burden on depressive symptoms in Chinese-Canadian family caregivers, an area on which little research has been conducted. A random sample of 339 Chinese-Canadian caregivers for elderly family members completed a structured telephone survey. The results showed that depressive symptoms were predicted positively by caregiving burden, while caregiving burden was predicted negatively by financial adequacy and positively by the level of activities of daily living (ADL) and instrumental activities of daily living (IADL) caregiving assistance provided. Culturally appropriate strategies are needed to support Chinese family caregivers in order to properly manage caregiving responsibilities, financial needs, and psychological burden.

Caregiving and Its Resulting Effects-The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore.

PubMed

Chua, Cheryl Kai Ting; Wu, Jun Tian; Wong, Yin Yee; Qu, Limin; Tan, Yung Ying; Neo, Patricia Soek Hui; Pang, Grace Suyin

2016-11-15

Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index-Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

Factors Associated With Higher Caregiver Burden Among Family Caregivers of Elderly Cancer Patients: A Systematic Review.

PubMed

Ge, Lixia; Mordiffi, Siti Zubaidah

Caring for elderly cancer patients may cause multidimensional burden on family caregivers. Recognition of factors associated with caregiver burden is important for providing proactive support to caregivers at risk. The aim of this study was to identify factors associated with high caregiver burden among family caregivers of elderly cancer patients. A systematic search of 7 electronic databases was conducted from database inception to October 2014. The identified studies were screened, and full text was further assessed. The quality of included studies was assessed using a checklist, and relevant data were extracted using a predeveloped data extraction form. Best-evidence synthesis model was used for data synthesis. The search yielded a total of 3339 studies, and 7 studies involving 1233 family caregivers were included after screening and full assessment of 116 studies. Moderate evidence supported that younger caregivers, solid tumors, and assistance with patient's activities of daily living were significantly associated with high caregiver burden. Eighteen factors were supported by limited evidence, and 1 was a conflicting factor. The scientific literature to date proved that caregiver burden was commonly experienced by family caregivers of elderly cancer patients. The evidence indicated that family caregivers who were at younger age, caring for solid tumor patients, and providing assistance with patient's activities of daily living reported high caregiver burden. The data provide evidence in identifying family caregivers at high risk of high caregiver burden. More high-quality studies are needed to clarify and determine the estimates of the effects of individual factors.

Exploring the influence of Internet-based caregiver support on experiences of isolation for older spouse caregivers in rural areas: a qualitative interview study.

PubMed

Blusi, Madeleine; Kristiansen, Lisbeth; Jong, Mats

2015-09-01

Many older spouse caregivers are tied to the home by their caring duties and feel isolated. The values of supporting older caregivers are well known. In rural areas with long distances and decline in essential services, attending caregiver support groups can be difficult. Using Internet-based services can provide an opportunity for rural caregivers to participate in caregiver support, regardless of geographical distances and without the need for physical presence. This study aimed to explore how Internet-based caregiver support may influence the experience of isolation among older spouse caregivers in rural areas. An intervention study where 63 older rural caregivers received an Internet-based caregiver support service. A qualitative interview study based on 31 interviews with open-ended questions, analysed using latent content analysis. Two themes represent the findings from the study: Expanding the concept of place and Developing networks. Even though participants still spent their days in the house, they experienced that daily life was being spent in a variety of places, both physically, virtually and emotionally. The Internet-based support service provided them with a tool to reconnect with family and develop new friends. Internet-based caregiver support may reduce the experience of isolation for spouse caregivers in rural areas. Nurses played a crucial part in the development, by encouraging, educating and inspiring caregivers and supporting their independence. Internet-based services ought to be an option for caregiver support in rural areas as it may reduce feelings of isolation for older spouse caregivers. © 2014 John Wiley & Sons Ltd.

Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients.

PubMed

Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee

2014-10-01

Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.

Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

PubMed Central

Jacobs, Daniel I.; Kumthekar, Priya; Stell, Becky V.; Grimm, Sean A.; Rademaker, Alfred W.; Rice, Laurie; Chandler, James P.; Muro, Kenji; Marymont, MaryAnne; Helenowski, Irene B.; Wagner, Lynne I.; Raizer, Jeffrey J.

2014-01-01

Background Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers. Methods QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument. Results Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44–8.05) points higher than paired caregiver reports on the 200-point scale (P = .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P < .001). Conclusions Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted. PMID:26034616

The moderating effect of religiosity on caregiving burden and depressive symptoms in caregivers of patients with dementia.

PubMed

Yoon, Kyung Hee; Moon, Yoo Sun; Lee, Yunhwan; Choi, Seong Hye; Moon, So Young; Seo, Sang Won; Park, Kyung Won; Ku, Bon D; Han, Hyun Jeong; Park, Kee Hyung; Han, Seol-Heui; Kim, Eun-Joo; Lee, Jae-Hong; Park, Sun A; Shim, Yong S; Kim, Jong Hun; Hong, Chang Hyung; Na, Duk L; Ye, Byoung Seok; Kim, Hee Jin; Moon, Yeonsil; Lee, Sang Soo; Kim, Do Hoon

2018-01-01

This study explored whether religiosity/spirituality has a protective role against negative caregiving outcomes, in a large multicenter nationwide sample of caregivers of patients with dementia in South Korea. Additionally, this study was the first to examine whether religiosity/spirituality could affect caregiving outcomes according to the various religious affiliations of caregivers. The study was conducted on a sample of 476 caregivers of patients with dementia participated in the Clinical Research Center for Dementia of South Korea (CREDOS). We examined the moderating effect of each of the three dimensions of religiosity/spirituality (organizational religious activity, ORA; non-organizational religious activity, NORA; intrinsic religiosity, IR) on the relationship between activities of daily living (ADL) of patients with dementia and caregiving burden and depressive symptoms of caregivers, using a series of hierarchical regression analyses. In addition, these analyses were conducted according to the religious affiliations of the caregivers. ORA, NORA, and IR of religiosity/spirituality alleviated the effect of ADL of patients on caregiving burden. ORA and IR moderated the relationship between ADL of patients and depressive symptoms of caregivers. These moderating effects of religiosity on caregiving outcomes were different according to various religious groups. We have identified religiosity/spirituality as a protective factor for caregivers of patients with dementia. The sub-dimensions of religiosity as moderators were different by religious affiliations of caregivers. Further studies are needed to investigate the specific religiosity-related factors which could positively impact the mental health of the caregivers of patients with dementia by religions.

Urban caregiver empowerment: Caregiver nativity, child-asthma symptoms, and emergency-department use.

PubMed

Coutinho, Maria Teresa; Kopel, Sheryl J; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-09-01

In this study, we examined the associations between caregiver empowerment, child-asthma symptoms, and emergency-department (ED) use in a sample of school-age urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child-asthma symptoms, and ED use as a function of caregiver nativity. Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7-9; N = 130). Caregiver empowerment was assessed within family, asthma services, and community domains. Children whose caregivers reported greater empowerment within the family (i.e., possessing sufficient knowledge and ability to care for their families) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (i.e., the ability to collaborate with asthma providers and the health-care system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, whereas U.S.-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child-asthma symptoms. For U.S.-born caregivers, higher levels of empowerment in asthma services were associated with more child-asthma symptoms. Results suggest that caregivers who feel more confident and better able to manage problems within their families may better manage their children's asthma symptoms. Foreign-born caregivers may benefit from increased support to more effectively navigate the asthma health-care system and manage their children's asthma. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Modeling the Distress of Spousal Caregivers of People with Dementia.

PubMed

Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

2017-01-01

The progressive mobilization of spouse caregivers who take care of a person with dementia (PWD) can lead to situations of distress. The current study sought to investigate the influence of the characteristics of the caregiving context on spousal caregiver distress. 125 spousal caregivers participated in this study. The characteristics of the caregiving context were assessed using questionnaires. We examined a moderated-mediator model (Step 1) in which we hypothesized that PWD and caregiver characteristics and dyadic determinants contribute to spousal caregiver distress. This model was compared based on the age at onset of the disease and the gender of the caregiver (Step 2). The model revealed that poor self-rated health and a lack of family support accentuated spousal caregiver distress, whereas the feeling of being prepared and level of confidence decreased spousal caregiver distress. Moreover, the quality of couple adjustment affected spousal caregiver distress, and this effect was mediated by the severity of the PWD's symptoms. Regarding the age at onset of the disease, the path between Couple Adjustment and the Care recipient's impairments was more important for caregivers of person with early-onset dementia (PEOD). Female caregivers who reported poor self-rated health experienced greater distress. It would be interesting to create a support program that would incorporate these three areas of intervention regarding the progression of the disease: first, "preparedness modules"; second, "dyadic modules" (especially for caregivers of PEOD); and third, "family modules". Specific attention should be given to female caregivers who report poor self-rated health.

Empowering Family Caregivers: The Powerful Tools for Caregiving Program

ERIC Educational Resources Information Center

Boise, Linda; Congleton, Leslie; Shannon, Kathy

2005-01-01

"Powerful Tools for Caregiving" is an education program for family caregivers of older adults. Based on a self-efficacy model, the program empowers family caregivers to reduce negative effects of caregiving and to practice self-care. Through a train-the-trainer approach, professional and community volunteers were trained as class leaders and…

"It Just Consumes Your Life": Quality of Life for Informal Caregivers of Diverse Older Adults With Late-Life Disability.

PubMed

Thai, Julie N; Barnhart, Caroline E; Cagle, John; Smith, Alexander K

2016-08-01

Little is known about the quality of life (QoL) for informal caregivers of disabled older adults aged 65+ with diverse backgrounds. Forty-two caregivers were interviewed in English and Cantonese about their caregiving experiences, their recollections of QoL over time, and the factors influencing their appraisals. Overall, 52% of caregivers experienced a decline in QoL. Factors associated with decreased QoL were less time for self, competing financial demands, and the physical and emotional impact of the patient's illness. Factors associated with no change in QoL were minimal caregiving responsibilities, a sense of filial duty, and QoL being consistently poor over time. Factors associated with improved QoL were perceived rewards in caregiving, receiving institutional help, and increased experience. Chinese caregivers were more likely to cite filial duty as their motivator for continued caregiving than were Caucasian caregivers. In conclusion, informal caregivers take on a huge burden in enabling older adults to age in the community. These caregivers need more support in maintaining their QoL. © The Author(s) 2015.

Effects of the TCARE® intervention on caregiver burden and depressive symptoms: preliminary findings from a randomized controlled study.

PubMed

Montgomery, Rhonda J V; Kwak, Jung; Kosloski, Karl; O'Connell Valuch, Katharine

2011-09-01

We examined the effects of a manualized care management protocol specifically designed for care managers working with caregivers, the Tailored Caregiver Assessment and Referral® (TCARE®) protocol, on caregiver identity discrepancy, burden, and depressive symptoms. Preliminary data from a longitudinal, randomized, controlled intervention study with 266 family caregivers served by 52 care managers in 4 states were analyzed using repeated measures random effects regression procedures. Caregivers in the intervention and control groups were repeatedly assessed for up to 9 months on caregiver identity discrepancy, 3 areas of caregiving burden-objective, relationship, and stress burdens; depression; and intention for nursing home placement. We found significant group by time interaction effects for caregiver identity discrepancy, relationship burden, stress burden, depression, and intention for nursing home placement. Caregivers in the intervention group experienced significant improvement on these measures, whereas caregivers in the control group worsened on these measures over time. The preliminary findings provide strong support for effectiveness of the TCARE® protocol on improving caregiver well-being and mental health outcomes.

Effects of the TCARE® Intervention on Caregiver Burden and Depressive Symptoms: Preliminary Findings From a Randomized Controlled Study

PubMed Central

Kwak, Jung; Kosloski, Karl; O’Connell Valuch, Katharine

2011-01-01

Objectives. We examined the effects of a manualized care management protocol specifically designed for care managers working with caregivers, the Tailored Caregiver Assessment and Referral® (TCARE®) protocol, on caregiver identity discrepancy, burden, and depressive symptoms. Methods. Preliminary data from a longitudinal, randomized, controlled intervention study with 266 family caregivers served by 52 care managers in 4 states were analyzed using repeated measures random effects regression procedures. Caregivers in the intervention and control groups were repeatedly assessed for up to 9 months on caregiver identity discrepancy, 3 areas of caregiving burden—objective, relationship, and stress burdens; depression; and intention for nursing home placement. Results. We found significant group by time interaction effects for caregiver identity discrepancy, relationship burden, stress burden, depression, and intention for nursing home placement. Caregivers in the intervention group experienced significant improvement on these measures, whereas caregivers in the control group worsened on these measures over time. Discussion. The preliminary findings provide strong support for effectiveness of the TCARE® protocol on improving caregiver well-being and mental health outcomes. PMID:21840840

Caregiver burden of family members of persons living with HIV in Thailand

PubMed Central

Lee, Sung-Jae; Li, Li; Jiraphongsa, Chuleeporn; Rotheram-Borus, Mary J

2010-01-01

Caregivers of people living with HIV (PLH) in Thailand face tremendous caregiver burden. This study examines complex ways in which caregivers’ mental health affects their levels of caregiver burden. This study uses data from 409 caregivers of PLH in northern and north-eastern Thailand. Multiple regression models were used to examine the predictors of caregiver burden. Depression was significantly associated with caregiver burden (P < 0.0001) and being HIV positive (P = 0.015). Inverse associations were observed between depression and quality of life (P < 0.0001) and caregiver burden and quality of life (P = 0.004). Social support had direct positive association with caregiver’s quality of life (P < 0.0001). Our findings underscore the complex relationship between caregiver burden, depression and HIV-status. Interventions that address the caregiver burden are urgently needed. PMID:20158549

Caregiver Burden Among Caregivers of Individuals With Severe Mental Illness: Testing the Moderation and Mediation Models of Resilience.

PubMed

Mulud, Zamzaliza Abdul; McCarthy, Geraldine

2017-02-01

The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n=201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden. Copyright © 2016 Elsevier Inc. All rights reserved.

Effects of the situational context and interactional process on the quality of family caregiving.

PubMed

Phillips, L R; Morrison, E; Steffl, B; Chae, Y M; Cromwell, S L; Russell, C K

1995-06-01

A staged theoretical model designed to explain the quality of elder caring by family members was tested. The model posits how the situational context, interactional process, and caregiving burden perceived by the caregiver affect the quality of elder caring. The purpose was to determine the amount of variance explained by the interactional process beyond that explained by the situational context and caregiving burden. Data were collected from 209 elder-caregiver dyads using interviews, observations, and caregiver self-reports. The strongest predictors of caregiving burden were the caregiver's stressful negative life events (situational context) and discrepancy between past and present image of elder (interactional process). The strongest predictors of quality of elder caring were the caregiver's perception of subjective burden and a monitoring role definition on the part of the caregiver (interactional process).

The reliability and validity of the Caregiver Work Limitations Questionnaire.

PubMed

Lerner, Debra; Parsons, Susan K; Chang, Hong; Visco, Zachary L; Pawlecki, J Brent

2015-01-01

To test a new Caregiver Work Limitations Questionnaire (WLQ). On the basis of the original WLQ, this new survey instrument assesses the effect of caregiving for ill and/or disabled persons on the caregiver's work performance. A questionnaire was administered anonymously to employees of a large business services company. Scale reliability and validity were tested with psychometric methods. Of 4128 survey participants, 18.3% currently were caregivers, 10.2% were past caregivers, and 71.5% were not caregivers. Current caregivers were limited in their ability to perform basic job tasks between mean 10.3% and 16.8% of the time. Confirmatory factor analysis yielded a scale structure similar to the WLQ's. Scales reliabilities (the Cronbach's α) ranged from 0.91 to 0.95. The Caregiver WLQ is a new tool for understanding the workplace effect of caregiving.

Caregiving burden and its determinants in Polish caregivers of stroke survivors.

PubMed

Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech

2014-10-27

Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization. Data were collected from 150 pairs of stroke patients/caregivers. Caregiver burden was assessed on the Caregiver Burden scale (CB). Several characteristics were measured as potential predictors of the burden. Special attention was paid to the caregiver's sense of coherence (SOC) and anxiety. Regression analysis was employed to test the hypothesized relationships between these variables and the burden. Forty-seven percentage of the caregivers reported a substantial burden (severe or moderate). Caregiver SOC (p < 0.001), anxiety (p < 0.001) and the patients' functional status (p < 0.001) were the most important predictors of the overall burden and the most consistent predictors of the majority of aspects included in the CB scale. Caregiver health, patient's gender, time spent caregiving and social support were also factors related to the burden. The identified predictors explained 67% of the variance in the overall burden. Clinicians and other professionals should focus on the coping abilities of caregivers, their emotional state and the level of patients' dependency, as these are the vital and modifiable factors affecting caregiver burden following stroke.

Family functioning is associated with depressive symptoms in caregivers of acute stroke survivors.

PubMed

Epstein-Lubow, Gary P; Beevers, Christopher G; Bishop, Duane S; Miller, Ivan W

2009-06-01

To determine whether family functioning is uniquely associated with caregiver depressive symptoms in the immediate aftermath of stroke. Cross-sectional data from the baseline assessment of an intervention study for stroke survivors and their families. Neurology inpatient service of a large urban hospital. Stroke survivors (n=192), each with a primary caregiver. The mean age of stroke survivors was 66 years, and most, 57%, were men (n=110). The mean age of caregivers was 57 years, and 73% (n=140) of the caregivers were women. Eighty-five percent of caregivers were white. Not applicable. Measures were chosen to assess caregivers' depressive symptoms (Centers for Epidemiologic Studies Depression Scale), family functioning (Family Assessment Device), and additional factors such as health status (Medical Outcomes Study 36-Item Short-Form Health Survey) and stroke survivors' cognitive abilities (modified Mini-Mental State Examination) and functional impairments (FIM and Frenchay Activities Index). Depressive symptoms were mild to moderate in 14% and severe in 27% of caregivers. Family functioning was assessed as unhealthy in 34% of caregiver-patient dyads. In statistical regression models, caregiver depression was associated with patients' sex, caregivers' general health, and family functioning. Forty-one percent of caregivers experienced prominent depressive symptoms after their family member's stroke. Higher depression severity in caregivers was associated with caring for a man, and having worse health and poor family functioning. After stroke, the assessment of caregivers' health and family functioning may help determine which caregivers are most at risk for a depressive syndrome.

Ethnic Differences in Caregiver Quality of Life in Pediatric Asthma

PubMed Central

Everhart, Robin S.; Mitchell, Daphne Koinis; McQuaid, Elizabeth L.; Kopel, Sheryl; Seifer, Ronald; Canino, Glorisa; Fritz, Gregory

2012-01-01

Objective The aim of this study was to determine ethnic and site differences in quality of life (QOL) in a sample of Latino (Puerto Rican and Dominican) and non-Latino White (NLW) caregivers of children with asthma in mainland US and Island PR. We also investigated ethnic and site differences in associations between caregiver QOL and indicators of asthma morbidity. Method Seven-hundred and eighty-seven children with asthma (7–16 years of age) and their primary caregivers participated. Primary caregivers completed a measure of QOL, child asthma control, and emergency department utilization, among other measures. Results Ethnic and site differences were found on total QOL scores (ΔF(1, 783) = 29.46, p < .001). Island PR caregivers reported worse QOL scores than RI Latino and NLW caregivers; RI Latino caregivers reported significantly worse QOL scores than NLW caregivers. In RI Latino and Island PR children, worse caregiver QOL was associated with asthma that was not in control and with 1 or more ED visits. Conclusion Latino caregivers may be experiencing a greater level of burden related to their child’s asthma than NLW caregivers. Caregiver QOL in pediatric asthma may be a reflection of broader, contextual stress that some Latino caregivers experience on a daily basis (e.g., cultural beliefs, acculturation). Future research should continue to investigate mechanisms that explain the burden associated with pediatric asthma in Latino families, as well as whether QOL assessments should consider the impact of everyday stressors on caregiver QOL in pediatric asthma. PMID:23027132

Urban caregiver empowerment: Caregiver nativity, child asthma symptoms and emergency department use

PubMed Central

Coutinho, Maria Teresa; Kopel, Sheryl J.; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-01-01

Introduction This study examines the associations between caregiver empowerment, child asthma symptoms, and emergency department use in a sample of school aged urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child asthma symptoms, and emergency department use as a function of caregiver nativity. Methods Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7–9; N=130). Caregiver empowerment was assessed within family, asthma services, and community domains. Results Children whose caregivers reported greater empowerment within the family (knowledge and ability to care for their family) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (ability to collaborate with asthma providers and healthcare system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, while US-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child asthma symptoms. For US-born caregivers, higher levels of empowerment in asthma services were associated with more child asthma symptoms. Discussion Results suggest that caregivers who feel more confident and better able to manage problems within their family may better manage their child's asthma more effectively navigate the asthma healthcare system and manage their child's asthma. PMID:27632543

Mental health among younger and older caregivers of dementia patients.

PubMed

Koyama, Asuka; Matsushita, Masateru; Hashimoto, Mamoru; Fujise, Noboru; Ishikawa, Tomohisa; Tanaka, Hibiki; Hatada, Yutaka; Miyagawa, Yusuke; Hotta, Maki; Ikeda, Manabu

2017-03-01

Caregiver burden in dementia is an important issue, but few studies have examined the mental health of younger and older family caregivers by comparing them with age- and gender-matched community residents. We aimed to compare the mental health of dementia caregivers with that of community residents and to clarify factors related to mental health problems in younger and older caregivers. We studied 104 dementia caregivers; 46 were younger (<65 years) and 58 were older (≥65 years). A total of 104 community residents who were matched for age and gender were selected. We compared depression (Center for Epidemiologic Studies Depression Scale for younger participants; Geriatric Depression Scale for older participants), health-related quality of life (QOL) short-form health survey (SF-8), sleep problems, and suicidal ideation between the caregivers and community residents by age. Behavioural and psychological symptoms of dementia, activities of daily living (ADL), and instrumental ADL were assessed among patients with dementia using the Neuropsychiatric Inventory, Physical Self-Maintenance Scale, and Lawton Instrumental ADL Scale, respectively. According to SF-8 results, both younger and older caregivers had significantly worse mental QOL than community residents (younger caregivers: 46.3 vs community residents: 49.7, P = 0.017; older caregivers: 48.2 vs community residents: 51.1, P = 0.024) but were not more depressive. Sleep problems were significantly more frequent in younger caregivers (39.1%) than in community residents (17.0%) (P = 0.017). Multiple regression analysis revealed that caregivers' deteriorated mental QOL was associated with patients' behavioural and psychological symptoms of dementia in younger caregivers and with dementia patients' instrumental ADL and female gender in older caregivers. Dementia caregivers had a lower mental QOL than community residents. To maintain caregivers' mental QOL, it is necessary to provide younger caregivers with skills or professional interventions for dealing with behavioural and psychological symptoms of dementia, and older caregivers must be offered adequate care support. © 2016 The Authors. Psychogeriatrics © 2016 Japanese Psychogeriatric Society.

Impact of a disease management program upon caregivers of chronically critically ill patients.

PubMed

Douglas, Sara L; Daly, Barbara J; Kelley, Carol Genet; O'Toole, Elizabeth; Montenegro, Hugo

2005-12-01

Few studies have examined the effects of caregiving on the caregivers of chronically critically ill (CCI) patients, and no one has examined the impact of a disease management program (DMP) on physical and psychological outcomes for the caregivers of CCI patients. The purposes of this study of caregivers of CCI patients were as follows: (1) to describe the characteristics of CCI patients and caregivers and to examine the frequency of depression, subjective burden, and physical health; (2) to examine factors related to depression after hospital discharge; and (3) to examine the effects of a DMP on the physical health, depression, and burden of caregivers 2 months post-hospital discharge. Prospective experimental design. Caregivers of 290 patients who had received > 3 days of mechanical ventilation while in the ICU of a university medical center. Sociodemographics, caregiver burden, physical health status, and depression were measured using established tools. Interviews of caregivers were conducted at hospital discharge and 2 months later. Seventy-three percent of patients survived, completed the study period, and required caregiving 2 months later. Caregivers of patients residing in an institution reported higher depression (p = 0.0001), higher burden (ie, disrupted schedule, p = 0.0001; lack of family support, p = 0.036), and greater health problem scores (p = 0.0001) than did caregivers of patients residing at home. The DMP did not have a statistically significant impact on any of the outcome variables. However, by 2 months, 54% of caregivers in the experimental group had no depression or mild depression compared with 34.5% of the control group. Two months after hospital discharge, approximately 25% of caregivers were classified as depressed with 16.7% of the depressed group classified as moderately or severely depressed. The caregivers of CCI patients are at risk for post-hospital discharge depression, and the caregivers of institutionalized CCI patients are at highest risk of long-term negative effects from caregiving.

The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial.

PubMed

Aoun, Samar M; Grande, Gunn; Howting, Denise; Deas, Kathleen; Toye, Chris; Troeung, Lakkhina; Stajduhar, Kelli; Ewing, Gail

2015-01-01

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain.

The Relationship Between Caregiving and Mortality After Accounting for Time-Varying Caregiver Status and Addressing the Healthy Caregiver Hypothesis.

PubMed

Fredman, Lisa; Lyons, Jennifer G; Cauley, Jane A; Hochberg, Marc; Applebaum, Katie M

2015-09-01

Previous studies have shown inconsistent associations between caregiving and mortality. This may be due to analyzing caregiver status at baseline only, and that better health is probably related to taking on caregiving responsibilities and continuing in that role. The latter is termed The Healthy Caregiver Hypothesis, similar to the Healthy Worker Effect in occupational epidemiology. We applied common approaches from occupational epidemiology to evaluate the association between caregiving and mortality, including treating caregiving as time-varying and lagging exposure up to 5 years. Caregiving status among 1,068 women (baseline mean age = 81.0 years; 35% caregivers) participating in the Caregiver-Study of Osteoporotic Fractures study was assessed at five interviews conducted between 1999 and 2009. Mortality was determined through January 2012. Cox proportional hazards models were used to estimate adjusted hazard ratios and 95% confidence intervals adjusted for sociodemographics, perceived stress, and functional limitations. A total of 483 participants died during follow-up (38.8% and 48.7% of baseline caregivers and noncaregivers, respectively). Using baseline caregiving status, the association with mortality was 0.77, 0.62-0.95. Models of time-varying caregiving status showed a more pronounced reduction in mortality in current caregivers (hazard ratios = 0.54, 0.38-0.75), which diminished with longer lag periods (3-year lag hazard ratio = 0.68, 0.52-0.88, 5-year lag hazard ratios = 0.76, 0.60-0.95). Overall, caregivers had lower mortality rates than noncaregivers in all analyses. These associations were sensitive to the lagged period, indicating that the timing of leaving caregiving does influence this relationship and should be considered in future investigations. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

[Predictors of competence in family caregivers of dementia patients].

PubMed

Chang, Tzu-Chung; Shyu, Yea-Ing Lotus; Chen, Min-Chi; Chiu, Yi-Chen; Huang, Huei-Ling

2012-12-01

Differences in dementia symptoms at different dementia stages increase the burden of caregiving. The inability of family caregivers to meet patient needs not only influences the health of the patient, but also impacts negatively on their personal physical and mental health. This study explores predictors of competence in family caregivers of dementia patients. We designed a cross-sectional study to examine 123 participant groups. Each group included one individual diagnosed with dementia and one family caregiver. Predictors of caregiver competence included few / no caregiver chronic diseases, relatively high level of caregiver education, and lack of comorbidities in the care recipient. These predictors explained 26.7% of total variance. We recommend that nurses evaluate caregivers' care competency in order to provide appropriate health information and assistance. Guidance provided should take into consideration the caregivers' educational background. Apart from providing information related to dementia behavior, nurses should also provide caregiver guidance information related to the effects of comorbidities on dementia, as appropriate.

Depression, caregiver burden and social support among caregivers of retinoblastoma patients in China.

PubMed

Wang, Li-Juan; Zhong, Wen-Xiang; Ji, Xun-Da; Chen, Jiao

2016-10-01

The aim of this study is to examine the burden of family caregivers of patients with retinoblastoma in China and the relationships between depression, caregiver burden and social support. A descriptive and correlational survey was conducted with 117 Chinese family caregivers of outpatient patients with retinoblastoma from the Department of Ophthalmology of a tertiary hospital in Shanghai, China. Family caregivers of outpatient patients with retinoblastoma were asked to respond to four questionnaires including sociodemographic questionnaire, Becker Depression Inventory, Caregiver Burden Inventory and Social Support Rating Scale. The incidence of depression in this study was 51.3%; the average score for social support indicated moderate social support available to the caregivers, although their level of caregiver burden was heavy. Depression scores were significantly positively correlated with caregiver burden scores and significantly negatively correlated with the social support scores. Heavy caregiver burden was associated with lower monthly income, low subjective social support and less use of social support. © 2016 John Wiley & Sons Australia, Ltd.

Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs.

PubMed

Pilapil, Mariecel; Coletti, Daniel J; Rabey, Cindy; DeLaet, David

2017-08-01

Caregivers of youth with special health care needs (YSHCN) are a critical part of the health care team. It is important for pediatric providers to be cognizant of the burden and strain caregiving can create. This article will discuss the health, psychological, social, and financial effects of caregiving, as well as strategies to screen for caregiver strain among families of YSHCN. Caregivers of YSHCN, for example, are more likely to report poor health status and demonstrate higher rates of depression and anxiety. Numerous validated screens for caregiver strain have been developed to address the multi-faceted effects of caregiving. Finally, we will discuss strategies to alleviate caregiver strain among this vulnerable population. We will describe services pediatric providers can encourage caregivers to utilize, including financial support through Supplemental Security Income (SSI), benefits available through the Family Medical Leave Act (FMLA), and options for respite care. Addressing caregiver strain is an important aspect of maintaining a family centered approach to the care of YSHCN. Copyright © 2017. Published by Elsevier Inc.

Impact of Non-caregiving Related Stressors on Informal Caregiver Outcomes

PubMed Central

Lu, Yvonne Yueh-Feng; Perkins, Anthony J.; Boustani, Malaz; Callahan, Christopher M.; Hendrie, Hugh C.

2014-01-01

Background Caregivers of persons with dementia are stressed. Stressors not related to care recipients’ needs impact caregiver outcomes, yet are seldom reported. Methods 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher’s exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. Results Caregivers reported no stressors 21.5%, 1–2 stressors 25%, and 3 stressors 53% of the time with 318 stressors total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between Most Stressful Events and depression (p=0.016), mobility (p=0.024) and caregiver issues (p=0.009) subscales of R-MBPC. Conclusion Results can be used to develop intervention and support strategies for caregivers experiencing non-caregiving related stressors. PMID:24413541

Health effects of caregiving: the caregiver health effects study: an ancillary study of the Cardiovascular Health Study.

PubMed

Schulz, R; Newsom, J; Mittelmark, M; Burton, L; Hirsch, C; Jackson, S

1997-01-01

We propose that two related sources of variability in studies of caregiving health effects contribute to an inconsistent pattern of findings: the sampling strategy used and the definition of what constitutes caregiving. Samples are often recruited through self-referral and are typically comprised of caregivers experiencing considerable distress. In this study, we examine the health effects of caregiving in large population-based samples of spousal caregivers and controls using a wide array of objective and self-report physical and mental health outcome measures. By applying different definitions of caregiving, we show that the magnitude of health effects attributable to caregiving can vary substantially, with the largest negative health effects observed among caregivers who characterize themselves as being strained. From an epidemiological perspective, our data show that approximately 80% of persons living with a spouse with a disability provide care to their spouse, but only half of care providers report mental or physical strain associated with caregiving.

Double- and Triple-Duty Caregiving Men: An Examination of Subjective Stress and Perceived Schedule Control.

PubMed

DePasquale, Nicole; Zarit, Steven H; Mogle, Jacqueline; Moen, Phyllis; Hammer, Leslie B; Almeida, David M

2018-04-01

Based on the stress process model of family caregiving, this study examined subjective stress appraisals and perceived schedule control among men employed in the long-term care industry (workplace-only caregivers) who concurrently occupied unpaid family caregiving roles for children (double-duty child caregivers), older adults (double-duty elder caregivers), and both children and older adults (triple-duty caregivers). Survey responses from 123 men working in nursing home facilities in the United States were analyzed using multiple linear regression models. Results indicated that workplace-only and double- and triple-duty caregivers' appraised primary stress similarly. However, several differences emerged with respect to secondary role strains, specifically work-family conflict, emotional exhaustion, and turnover intentions. Schedule control also constituted a stress buffer for double- and triple-duty caregivers, particularly among double-duty elder caregivers. These findings contribute to the scarce literature on double- and triple-duty caregiving men and have practical implications for recruitment and retention strategies in the health care industry.

The Complexities of Family Caregiving at Work: A Mixed-Methods Study.

PubMed

Gaugler, Joseph E; Pestka, Deborah L; Davila, Heather; Sales, Rebecca; Owen, Greg; Baumgartner, Sarah A; Shook, Rocky; Cunningham, Jane; Kenney, Maureen

2018-01-01

The current project examined the impact of caregiving and caregiving-work conflict on employees' well-being. A sequential explanatory mixed-methods design (QUAN→qual) was utilized, and a total of 880 employees from a large health-care plan employer completed an online survey. Forty-five caregivers who completed the survey also participated in one of the five focus groups held 1 to 2 months later. Employed caregivers were significantly ( p < .05) more likely to indicate poorer physical and mental health than noncaregivers; among caregivers ( n = 370), caregiving-work conflict emerged as the most significant predictor of well-being and fully mediated the empirical relationship between burden and well-being. The focus group findings complemented the quantitative results; many of the challenges employed caregivers experience stem from their ability or inability to effectively balance their employment and caregiving roles. The results suggest the need to focus on caregiving-work conflict when constructing new or translating existing evidence-based caregiver interventions.

The relationship between caregiving self-efficacy and depressive symptoms in family caregivers of patients with Alzheimer disease: a longitudinal study.

PubMed

Grano, Caterina; Lucidi, Fabio; Violani, Cristiano

2017-07-01

Caregiving for a relative with dementia has been associated with negative consequences for mental health. Self-efficacy has been shown to correlate negatively with depression but the long-term association between caregiver burden, caregiver self-efficacy, and depressive symptoms, remains still largely unexplored. The aim of the present study was to evaluate whether different self-efficacy domains partially mediated the relationship between caregiving burden and depression. A three-wave design was used, with initial assessment and follow-ups three months later and one year later. One hundred seventy caregivers of patients with AD responded to measures of caregiver burden, caregiving self-efficacy, and depressive symptoms. Data were analyzed by means of structural equation models. The tested model provided support for the guiding hypothesis. Burden at the time of the first assessment (T1) significantly influenced depression one year later and the relationship between burden at time one and depressive symptoms one year later was partially mediated by self-efficacy for controlling upsetting thoughts. The findings of the present study provide evidence that, along a considerable length of time, the effects of caregiver burden on depressive symptoms can be explained by the caregivers' efficacy beliefs in controlling upsetting thoughts related to the caregiving tasks. Interventions for caregivers of patients with AD may help them in tackling negative thoughts about the caregiving role.

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population.

PubMed

Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit

2018-03-01

We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p < .001). Family caregiver burden were also higher in depressive groups (p < .001). Among patients only the depression was negatively correlated with PSS (p < .001, r = -2.97). Presence of depression (p < .001, r = 0.381) was positively correlated and family caregiver role was negatively correlated (p < .001, r = -0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.

Caregiver burden and needs of dementia caregivers in Thailand: a cross-sectional study.

PubMed

Muangpaisan, Weerasak; Praditsuwan, Rungnirand; Assanasen, Jintana; Srinonprasert, Varalak; Assantachai, Prasert; Intalapaporn, Somboon; Chatthanawaree, Wichai; Dajpratham, Piyapat; Kuptniratsaikul, Vilai; Pisansalakij, Doojpratna

2010-05-01

To identify the burdens of Thai dementia caregivers and to determine the services that could support them in this function. The authors surveyed 88 dementia caregivers attending "Caregiver Day". The questionnaire contained Caregiver Burden Inventory. The answers range from "not at all descriptive" (zero) to "very descriptive" (4). The authors also explored baseline characteristics of caregivers and care recipients as well as caregiver's needs of a supporting system. There was an 82% response rate. Responses in time-dependence burden distributed almost equally in the five possible scales. In developmental and physical burden, caregivers rate scores mainly from 0-2. The scores in social and emotional burden ranged mainly between 0-1. Dependency in basic activities of daily living correlated with higher caregiver burden (odd ratio 7.48, 95% confidence interval 1.42-39.53, p = 0.02), while sex and kinship did not. The top three caregiver's needs were 1) caregiver education and training, 2) telephone line provided for caregiver consultation and 3) special system in a hospital provided for dementia patients to have rapid access to see a doctor. Caring for dementia patients can lead to high caregiver burden, particularly those caring for dependent patients. Physical and developmental burdens are affected more than social and emotional burdens. Culture, relationship quality and resources (coping, outlook on life and social support) might be contributing factors of this difference.

The impact of perceived lack of support provided by health and social care services to caregivers of people with motor neuron disease.

PubMed

Peters, Michele; Fitzpatrick, Ray; Doll, Helen; Playford, E Diane; Jenkinson, Crispin

2012-02-01

Our objective was to investigate the relationship between support by health and social care services and caregiver well-being. A survey, including a generic health status measure (SF-12), a disease-specific measure for patients (ALSAQ-40), the Carer Strain Index (CSI) for caregivers and questions on experiences of health and social care services, was sent to patient members of the MND Association (UK) and their caregivers. A single 'problem score' was calculated from the experience questions and the relationship between the problem score with caregiver and patient well-being was analysed. Most caregivers reported at least one problem with support from services. The most common problems were services not valuing caregivers' experiences, and caregivers not feeling sufficiently involved in planning care. The problem score significantly increased with increasing caregiver strain and worsening mental health. The problem score was also increased as patient well-being decreased. The results suggest that caregiver strain was higher and mental health lower as the number of problems reported increased. A higher perceived lack of caregiver support was also related to a decrease in patient well-being, suggesting that caregivers' needs increase as the disease progresses. This emphasizes the importance of MND caregivers being appropriately supported by health and social care services in their caregiving role.

Long-Term Effects of Bereavement and Caregiver Intervention on Dementia Caregiver Depressive Symptoms

ERIC Educational Resources Information Center

Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.

2008-01-01

Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…

Predictors of life satisfaction among caregivers of individuals with multiple sclerosis.

PubMed

Waldron-Perrine, Brigid; Rapport, Lisa J; Ryan, Kelly A; Harper, Kaja Telmet

2009-04-01

Research on life satisfaction among caregivers of persons with multiple sclerosis (MS) is sparse. This study examined the extent to which MS-specific disease and psychosocial characteristics predict caregiver life satisfaction. Participants were 64 caregivers of patients with MS and the patients for whom they care. Multiple regression analysis indicated that caregiver perception of illness uncertainty and patients' unawareness of deficits have unique value in predicting caregiver life satisfaction, even after accounting for general financial status. Gender and level of social support were also important contributing factors to caregiver life satisfaction. The findings suggest that duration and severity of the patients' illness take a greater toll on life satisfaction of caregivers with low versus high social support, particularly among women caregivers.

Mental health and sleep of older wife caregivers for spouses with Alzheimer's disease and related disorders.

PubMed

Willette-Murphy, Karen; Todero, Catherine; Yeaworth, Rosalee

2006-10-01

This descriptive study examined sleep and mental health variables in 37 older wife caregivers for spouses with dementia compared to 37 age-matched controls. The relationships among selected caregiving variables (behavioral problems, caregiving hours, and years of caregiving), appraisal of burden, self-reported sleep efficiency for the past week, and mental health outcomes were examined. Lazarus and Folkman's stress and coping framework guided the study. Mental health and sleep were poorer for caregivers. Caregiving and appraisal of burden variables showed direct and indirect effects on mental health. However, caregiving and appraisal of burden variables were not significant for predicting sleep efficiency. Sleep efficiency was a good predictor of mental health in this sample of wife caregivers.

Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review.

PubMed

He Leow, Mabel Qi; Wai Chi Chan, Sally

Background: Terminally ill people have complex physical and psychological needs. As a result, their caregivers may experience high levels of burden, and some caregivers are unable to cope with the burden. Thus, it is important to determine the various factors that may influence caregiver burden, so that healthcare professionals may implement strategies to reduce caregiver burden. In this review, "caregiver burden" was expanded to include "caregiver stress" and "caregiver strain", as the two terms were related to caregiver burden. The objective of this systematic review was to identify the factors that may influence caregiver burden of a terminally ill adult in the home setting. Types of participants: This review considered adult participants (above age 18) who were the main caregivers of a terminally ill adult in the home setting, and providing care for the terminally ill person at the point of participation in the study.Types of intervention: There was no specific intervention of interest for the study.Types of outcomes: The focus of study was the factors that affected caregiver burden of the terminally ill person.Types of studies: Quantitative studies such as randomised controlled trials (RCTs), controlled clinical trials (CCTs), interrupted time series (ITSs), controlled before after designs (CBAs), observational design (cohort, case-control), and descriptive surveys were included in the study. This review was limited to papers in English and Mandarin. A literature search from the inception of the database to October 2010 was conducted using major electronic databases. The databases used were CINAHL, MEDLINE, PsycINFO (Ovid), Scopus, SpringerLink, ScienceDirect, Web of Science, Mosby's Nursing Consult, Mednar: Deep web medical search, Proquest Dissertations and Theses and China Journal Net.Methodological quality: The quality of the potential studies was assessed by two independent reviewers using the critical appraisal checklists for descriptive/case studies from the JBI-MAStARI (Joanna Briggs Institute-Meta Analysis of Statistics Assessment and Review Instrument). Quantitative data were extracted from included papers using standardised data extraction tools from the JBI-MAStARI. Findings were presented in narrative form, as statistical pooling was not possible. Seven studies were included in the review. All the studies used a cross-sectional descriptive survey for the collection of data. Four main factors that influenced caregivers' perception of caregiving burden were identified: 1. Caregiver characteristics, 2. Patient characteristics, 3. Social support, and 4. Caregivers' personal protective resources. Caregiver characteristics, patient characteristics, social support, and attitude of caregiver towards the caregiving situation, were found to influence caregivers' perceived caregiving burden. Additional support is required for caregivers who are employed, known to have financial difficulties, caring for patient indicating symptom distress, and caring for a patient at the terminal stage (Level III). Future studies may attempt to develop a framework to identify factors that impact on caregiver burden. More studies on caregiver burden in males, caregiver burden of patients who were at the terminal stages of the various chronic illnesses should be explored.

Work Impact and Emotional Stress Among Informal Caregivers for Older Adults.

PubMed

Longacre, Margaret L; Valdmanis, Vivian G; Handorf, Elizabeth A; Fang, Carolyn Y

2017-05-01

With the growing aging population and reliance on informal caregivers in the United States, many individuals will take on the role of caregiver as an adult. We examined whether informal caregivers experience work interference or a change in work status (i.e., retiring/quitting) due to caregiving. We also explored whether experiencing work interference or a change in work status was associated with greater emotional stress. This secondary analysis is drawn from the Fifth National Survey of Older Americans Act (OAA) program participants, which included 1,793 family caregivers. The present analysis is on caregivers of working age (18-64 years) providing care to another adult, which included 922 caregivers. Ordinal logit models were used to assess associations between experiencing work interference or a change in work status and emotional stress. Study weights were applied for all analyses. At the time of the survey, more than half (52.9%) of caregivers were employed full- or part-time. Among nonworking caregivers (i.e., not working or retired) at the time of the survey, 39.8% responded that they had quit or retired early due to caregiving demands. Among employed caregivers, 52.4% reported that informal caregiving had interfered with their employment. Importantly, those respondents who reported work interference or a change in work status were more likely to report higher levels of emotional stress associated with caregiving demands. These findings suggest the need to further explore work among informal caregivers and associations with emotional stress, as well as consider work-based policy approaches, organizational and/or societal, to support informal caregivers. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study.

PubMed

van Wijnen, Helena Gfm; Rasquin, Sascha Mc; van Heugten, Caroline M; Verbunt, Jeanine A; Moulaert, Véronique Rm

2017-09-01

The purpose was to gain insight in the functioning of caregivers of cardiac arrest survivors at 12 months after a cardiac arrest. Secondly, the course of the wellbeing of the caregivers during the first year was studied. Finally, factors that are associated with a higher care burden at 12 months after the cardiac arrest were investigated. A total of 195 family caregivers of cardiac arrest survivors were included. Quality of life (SF-36, EuroQol-VAS), caregiver strain (CSI) and emotional functioning (HADS, IES) were measured at two weeks, three months and one year after the cardiac arrest. Thereby, the caregiver was asked to fill out the cognitive failure questionnaire (CFQ) to evaluate their view on the cognitive status of the patient. Caregiver strain was high in 16 (15%) of the caregivers at 12 months. Anxiety was present in 33 (25%) caregivers and depression in 18 (14%) caregivers at 12 months. The repeated measures MANOVA showed that during the first year the following variables improved significantly: SF-36 domains social and mental health, role physical, role emotional and vitality, caregiver strain, HADS and IES ( P<0.001). At 12 months caregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS ( P=0.01), EuroQol-VAS ( P=0.02), and the CFQ ( P<0.001), all measured at 12 months after the cardiac arrest. Overall wellbeing of the caregivers improves during the first year up to normal levels, but caregivers with emotional problems or perceived cognitive problems at 12 months are at risk for developing a higher care burden.

Factors of caregiver burden and family functioning among Taiwanese family caregivers living with schizophrenia.

PubMed

Hsiao, Chiu-Yueh; Tsai, Yun-Fang

2015-06-01

To assess the degree of caregiver burden and family functioning among Taiwanese primary family caregivers of people with schizophrenia and to test its association with demographic characteristics, family demands, sense of coherence and family hardiness. Family caregiving is a great concern in mental illness. Yet, the correlates of caregiver burden and family functioning in primary family caregivers of individuals with schizophrenia still remain unclear. A cross-sectional descriptive study. A convenience sample of 137 primary family caregivers was recruited from two psychiatric outpatient clinics in Taiwan. Measures included a demographic information sheet and the Chinese versions of the Family Stressors Index, Family Strains Index, 13-item Sense of Coherence Scale, 18-item Caregiver Burden Scale, Family Hardiness Index and Family Adaptability, Partnership, Growth, Affection, and Resolve Index. Data analysis included descriptive statistics, Pearson's product-moment correlation coefficients, t-test, one-way analysis of variance and a stepwise multiple linear regression. Female caregivers, additional dependent relatives, increased family demands and decreased sense of coherence significantly increased caregiver burden, whereas siblings as caregivers reported lower degrees of burden than parental caregivers. Family caregivers with lower family demands, increased family hardiness and higher educational level had significantly enhanced family functioning. Sense of coherence was significantly correlated with family hardiness. Our findings highlighted the importance of sense of coherence and family hardiness in individual and family adaptation. Special attention needs to focus on therapeutic interventions that enhance sense of coherence and family hardiness, thereby improving the perception of burden of care and family functioning. Given the nature of family caregiving in schizophrenia, understanding of correlates of caregiver burden and family functioning would help provide useful avenues for the development of family-focused intervention in psychiatric mental health nursing practice. © 2014 John Wiley & Sons Ltd.

Preventive Services Use among African American and Latino Adult Caregivers in South Los Angeles

PubMed Central

Mendez-Luck, Carolyn A.; Walker, Kara Odom; Luck, Jeff

2016-01-01

Background The burden of informal caregiving is significant and well-documented, yet the evidence is mixed as to whether being a caregiver presents an additional barrier to receiving recommended preventive care. Objectives To determine whether (1) caregivers compared to non-caregivers were less likely to receive preventive health services; and (2) higher intensity caregivers were less likely to receive preventive health services than lower intensity caregivers. Research Design, Subjects, and Measures Data were from a telephone survey of Latino and African American adults 50 years or older in South Los Angeles (n=702). Outcomes were flu vaccination, pneumococcal vaccination, and colorectal cancer screening. Logistic regression models adjusted for predisposing, enabling, and need factors according to the Andersen Model of Access to Health Care for Low-Income Populations. Results Caregiver type (e.g., adult child, non-related) was associated with varying odds of receiving a preventive service. Caregivers had lower odds than non-caregivers of receiving preventive services although odds of receiving a flu vaccination improved slightly for caregivers of persons with memory loss compared to other caregivers. More weekly caregiving hours was associated with higher odds of receiving flu vaccination (AOR 1.1, 95% CI=1.0, 1.1) or colorectal cancer screening (AOR 1.1, 95% CI=1.0, 1.1). Caregivers and non-caregivers age 65 and older or with chronic conditions were more likely to receive vaccinations. Conclusions Preventive service use was influenced by characteristics of the caregiving situation. An opportunity may exist to leverage care recipients’ ongoing contact with health care providers to increase caregivers’ own access to preventive services. PMID:27414461

Associations Between Secondary Caregivers' Supportive Behavior and Psychological Distress of Primary Spousal Caregivers of Cognitively Intact and Impaired Elders.

PubMed

Lou, Vivian W Q; Kwan, Chi Wai; Chong, Ming Lin Alice; Chi, Iris

2015-08-01

This study examined associations between the availability and types of supportive behavior provided by secondary caregivers and the psychological distress of primary spousal caregivers of cognitively intact and impaired elders. A sample of 8,087 assessments using the validated Chinese version of the Minimum Data Set-Home Care of individuals applying for government-subsidized long-term care services from 2006 to 2009 in Hong Kong were selected based on inclusion criteria. More than 70% of primary caregivers had secondary caregivers; the rate was slightly lower for those caring for moderately or severely cognitively impaired spouses. More than half of the primary spousal caregivers had secondary caregivers who provided both emotional and instrumental support. Emotional support provided by secondary caregivers had a negative association with primary caregivers' psychological distress when their care recipients were cognitively intact. When secondary caregivers provided both instrumental and emotional support, primary caregivers had a higher likelihood of psychological distress when care recipients had greater negative mood symptoms as compared to those who had less negative mood symptoms. This is the first study that examined the association between availability and types of supportive behavior provided by secondary caregivers and the psychological distress of primary spousal caregivers of cognitively intact and impaired elders. The findings suggest a need to provide services that enhance the provision of emotional support from both secondary and primary caregivers to cognitively intact elders and support primary spousal caregivers to seek appropriate help according to the mood of care recipients. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Family caregiver social problem-solving abilities and adjustment to caring for a relative with vision loss.

PubMed

Bambara, Jennifer K; Owsley, Cynthia; Wadley, Virginia; Martin, Roy; Porter, Chebon; Dreer, Laura E

2009-04-01

To examine the prevalence of persons at risk for depression among family caregivers of visually impaired persons and the extent to which social problem-solving abilities are associated with caregiver depressive symptomatology and life satisfaction. Family caregivers were defined as adults who accompanied their adult relative to an appointment at a low-vision rehabilitation clinic and self-identified themselves as the primary family caregiver responsible for providing some form of assistance for their relative due to vision impairment. Demographic variables, depressive symptoms, life satisfaction, caregiver burden, and social problem-solving abilities were assessed in caregivers. The patient's visual acuity and depressive symptoms and their relationship to the caregiver's depressive symptoms and life satisfaction were also examined. Ninety-six family caregivers were enrolled. Of those, 35.4% were identified as at risk for depression. Among caregivers, dysfunctional or ineffective social problem-solving abilities were significantly associated with greater depressive symptomatology and decreased life satisfaction after adjustment for caregiver burden and demographic and medical variables for both the caregiver and the visually impaired patient. Problem orientation or motivation to solving problems was also significantly associated with caregiver depression and satisfaction with life. A substantial number of caregivers of visually impaired adults experience psychosocial distress, particularly among those who possess poor social problem-solving abilities. These results underscore the need for routine screening and treatment of emotional distress among individuals caring for relatives with vision impairments. Future research should examine the extent to which psychosocial interventions targeting caregiver social problem-solving skills may be useful not only in improving caregiver quality of life but also in subsequently enhancing rehabilitation outcomes for the visually impaired care recipient.

Traumatic Brain Injury Caregivers: A Qualitative Analysis of Spouse and Parent Perspectives on Quality of Life

PubMed Central

Kratz, Anna L.; Sander, Angelle M.; Brickell, Tracey A.; Lange, Rael T.; Carlozzi, Noelle E.

2015-01-01

The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents, n= 21 partners/spouses (77% female, Mean age = 57.96 year, range = 34-78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent subthemes indicated that caregivers are (a) overburdened with responsibilities, (b) lack personal time and time for self-care, (c) feel that their life is interrupted or lost, (d) grieve the loss of the person with TBI, and (e) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of subthemes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ. PMID:26052805

Emotional distress and burden among caregivers of children with oncological/hematological disorders.

PubMed

Edmond, Sara N; Graves, Patricia E; Whiting, Sara E; Karlson, Cynthia W

2016-06-01

Caring for children with oncological and hematological disorders may lead to caregiver emotional distress and caregiver burden; however, little work has examined the relationship between children's symptoms and caregiver's distress and burden. This study used self-report survey data from caregivers (N = 96) and a cross-sectional design to examine correlates of caregiver emotional distress and burden. Data collected included caregiver and child demographic data, child symptoms (i.e., sleep problems, pain, and emotional/behavioral problems), caregiver emotional distress, and caregiver burden. Multiple linear regression found that parent reported financial difficulty (β = 0.29, t = 3.13, p = .003), greater child sleep problems (β = 0.29 t = 2.81, p = .007), greater child pain (β = 0.33 t = 3.48, p = .001), and greater child emotional/behavioral problems (β = 0.27, t = 2.71, p = .009) were all related to higher levels of caregiver emotional distress. Only financial difficulties (β = -0.35, t = -2.03, p = .04) and child pain (β = -0.30, t = -2.33, p = .02) were related to caregiver burden. Child symptoms may play an important role in the development of caregiver distress and caregiver burden; future research should utilize longitudinal designs to examine temporal and casual relationships. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

The family caregiver experience - examining the positive and negative aspects of compassion satisfaction and compassion fatigue as caregiving outcomes.

PubMed

Lynch, Susan H; Shuster, Geoff; Lobo, Marie L

2017-08-16

Caregiving results in both positive and negative outcomes for caregivers. The purpose of this study was to examine compassion fatigue and compassion satisfaction in family caregivers. Using a cross sectional descriptive survey design with a convenience sample, 168 family caregivers of individuals with chronic illness completed a web-based survey. Measures included a demographic questionnaire, Caregiver Burden Interview, Brief COPE inventory and Professional Quality of Life (ProQOL). The majority of participants (71%) reported high levels of caregiver burden, moderate to low levels of the compassion fatigue concepts of burnout (59.5%) and secondary traumatic stress (STS) (50%), and moderate levels of compassion satisfaction (82.7%). Regression analyses showed that caregiver burden, time caregiving, coping, social support, and caregiving demands explained a total variance of 57.1%, F(11,119) = 14.398, p < .00 in burnout and a total variance of 56%, F(11, 119) = 13.64, p < .00 in STS. Specifically, behavioral disengagement is a predicator that may indicate early compassion fatigue. Findings suggest that despite high caregiver burden and moderate compassion fatigue, family caregivers are able to provide care and find satisfaction in the role. This study supports the use of compassion fatigue and compassion satisfaction as alternative or additional outcomes to consider in future research.

Falls and Hospitalizations Among Persons With Dementia and Associated Caregiver Emotional Difficulties.

PubMed

Leggett, Amanda N; Polenick, Courtney A; Maust, Donovan T; Kales, Helen C

2018-03-19

Falls and hospitalizations are adverse health events commonly experienced by persons with dementia (PWDs). These events often require urgent care from a family caregiver and may increase caregiver stress. We examine falls and hospitalizations among PWDs as predictors of caregivers' reported care-related emotional difficulty, in addition to care-related stressors. Cross-sectional telephone survey of 652 informal caregivers for PWDs. A multinomial logistic regression examined falls (last month) and hospitalizations (prior year) experienced by PWDs as predictors of caregivers' care-related emotional difficulty, accounting for demographic characteristics and primary and secondary caregiving stressors. Over 20% of caregivers reported high levels of care-related emotional difficulty. Controlling for demographic characteristics and primary and secondary caregiving stressors, the PWD's prior month fall was significantly associated with greater care-related emotional difficulty; the PWD's hospitalizations were not associated with care-related emotional difficulty. Approximately 30% of PWDs had experienced a past year hospitalization and prior month fall, and one in five caregivers reported high emotional difficulty related to care. Although secondary strains and resources of caregiving were strong predictors of care-related emotional difficulty, PWDs' falls represent a significant stressor that increases odds of caregiver emotional difficulty over and above other strains. Consequently, a fall experienced by a PWD may represent a key time for clinicians to assess caregiver well-being.

Spirituality and psychological well-being: testing a theory of family interdependence among family caregivers and their elders.

PubMed

Kim, Suk-Sun; Reed, Pamela G; Hayward, R David; Kang, Youngmi; Koenig, Harold G

2011-04-01

The family spirituality-psychological well-being model was developed and tested to explore how spirituality influences psychological well-being among elders and caregivers in the context of Korean family caregiving. The sample consisted of 157 Korean elder-family caregiver dyads in Seoul, Korea. The intraclass correlation coefficient and the actor-partner interdependence statistical model were used to analyze the data. There were significant correlations between elders' and caregivers' spirituality and between elders' and caregivers' psychological well-being. Elders' and caregivers' spirituality significantly influenced their own psychological well-being. The caregiver's spirituality significantly influenced the elder's psychological well-being, but the elder's spirituality did not significantly influence the caregiver's psychological well-being. Findings suggest that elders' and caregivers' spirituality should be assessed within the family to provide holistic nursing interventions. Copyright © 2011 Wiley Periodicals, Inc.

Exploring gender differences in the relationships between eldercare and labour force participation.

PubMed

Lee, Yeonjung; Tang, Fengyan; Kim, Kevin H; Albert, Steven M

2015-03-01

This study investigated the reciprocal relationship between parental caregiving and labour force participation to determine whether (1) caregiving related to subsequent employment; (2) employment related to subsequent caregiving; (3) caregiving and labour force participation had a reciprocal relationship across time; and (4) gender differences existed in these relationships. A cross-lagged panel design was applied with structural equation modeling. The study sample included adult children aged 51 or older with living parents or parents-in-law. No reciprocal relationship was found between caregiving and labour force participation, but gender differences were evident. Women caregivers in 2006 were less likely to be working in 2008, whereas employment status was not related to subsequent caregiving. In contrast, men working in 2008 were less likely to be caregiving in 2010, whereas caregiving was not related to subsequent employment status. Findings suggest that gender plays an important role in the relationship between caregiving and labour force participation.

Reciprocal Suffering: Caregiver Concerns During Hospice Care

PubMed Central

Wittenberg-Lyles, Elaine; Demiris, George; Oliver, Debra Parker; Burt, Stephanie

2010-01-01

Context For many hospice caregivers, the constancy and difficulty of caregiving impact their physical quality of life and cause depression, psychological distress, guilt, loneliness, and restrictions on social activities. Objectives Deviating from traditional unidimensional research on hospice caregivers, this study explored the transactional nature of reciprocal suffering by examining caregiver concerns through four dimensions: physical, psychological, social, and spiritual. Methods Researchers analyzed audiotapes of intervention discussions between hospice caregivers and research social workers. Results Results indicated that of the 125 pain talk utterances, the majority referenced psychological concern (49%), followed by physical (28%), social (22%), and spiritual (2%). Reflections on concerns revealed a global perspective of caregiving, which highlighted the patient’s needs juxtaposed to the caregiver’s recognized limitations. Conclusion By examining the reciprocal nature of suffering for caregivers, this study reinforced the need for assessing caregivers in hospice care, with specific emphasis on the importance of providing caregiver education on pain management. PMID:21146356

Health trajectories of family caregivers: associations with care transitions and adult day service use.

PubMed

Liu, Yin; Kim, Kyungmin; Zarit, Steven H

2015-06-01

The study examines family caregivers' health changes over 1 year on four health dimensions and explores the association of differential health trajectories with adult day service (ADS) use and caregiving transitions. The participants were 153 primary caregivers of individuals with dementia (IWDs) who provided information on care situations and their own health at baseline, 6-month, and 12-month interviews. Caregivers showed increasing functional limitations and decreasing bodily pain over time, whereas role limitation and general health perception remained stable. Furthermore, caregivers' trajectories of functional limitation were associated with their extent of ADS use at baseline and their relatives' placement. Health is multidimensional; all dimensions of caregiver health do not change in a uniform manner. The findings underscore the importance of the association of caregiving transitions and caregiver health and the potential health benefits of ADS use for family caregivers. © The Author(s) 2014.

Family caregivers, patients and physicians: ethical guidance to optimize relationships.

PubMed

Mitnick, Sheryl; Leffler, Cathy; Hood, Virginia L

2010-03-01

Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health care professionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals in the role of family caregivers may suffer additional burdens. Physician recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization. However, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. The American College of Physicians in conjunction with ten other professional societies offers ethical guidance to physicians in developing mutually supportive patient-physician-caregiver relationships.

The Caregiver Vigilance Scale: application and validation in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project.

PubMed

Mahoney, Diane Feeney; Jones, Richard N; Coon, David W; Mendelsohn, Aaron B; Gitlin, Laura N; Ory, Marcia

2003-01-01

This article reports on the measurement properties of Caregiver Vigilance, a four-item caregiver self-report of perceived oversight demand for Alzheimer's disease and related disorders family caregiving. The self-report uses data from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project, a multisite National Institutes of Health (NIH) sponsored study of over 1,200 family caregivers. Results indicate that the items were clearly understood by the racially/ethnically diverse respondents; and, when responses were transformed into a summary scale and analyzed, unidimensionality was evident and internal consistency reliability favorably demonstrated. We suggest using the Caregiver Vigilance Scale in conjunction with traditional burden measures to systematically include the caregiving time associated with protectively watching over care recipients and the daily duration of this responsibility. We also highlight the practical utility of selected items for potential use in the caregiver assessment process.

Cultural predictors of caregiving burden of Chinese-Canadian family caregivers.

PubMed

Lai, Daniel W L

2007-01-01

The growth of research knowledge on culturally diverse family caregivers for the aging population lags behind the increase of culturally diverse populations in Canada. This study examines the effects of culture, as manifested through cultural variables, on the caregiving burden of family caregivers in a Chinese-Canadian community. A random sample of 339 Chinese-Canadian caregivers for elderly relatives completed a telephone survey. Results of hierarchical stepwise multiple regression analysis reported the predicting effects of culture-related variables on caregiving burden. The findings indicated that being an immigrant, having a Western or non-Western religion as compared to having no religion, and having a lower level of filial piety, predicted a higher level of caregiving burden. Chinese tradition does not exempt the caregivers from being burdened. Policies and practices should address the needs of family caregivers according to the intra-cultural variations identified in this study.

Caregiver burden among primary caregivers of patients undergoing peripheral blood stem cell transplantation: a cross sectional study.

PubMed

Akgul, Nur; Ozdemir, Leyla

2014-08-01

This study aimed to identify caregiver burden and influencing factors on the burden in primary caregivers of peripheral blood stem cell transplantation patients within 2-12 months following transplant, indicating early recovery period after discharge. This descriptive cross sectional study was carried out at hematopoietic stem cell transplantation outpatient units of three university hospitals in Turkey. A total of 55 patient and caregiver dyads were recruited and interviewed. The data were collected using questionnaires developed by the researchers and caregiver burden was measured with the Zarit Burden Interview. The mean score of Zarit Burden Interview was 28.41 (SD = 13.90). Patients' symptoms including nausea and self depreciation feeling were related to greater caregiver burden. Self-depreciation was referred to feeling undervalued. The mean score of the tool was significantly higher in caregivers who have not been educated beyond primary school and also caregivers who had lower income. Caregivers who supported their patients to fulfill physical needs and who did not receive help for meeting patients' psychological needs had statistically more elevated levels of burden. Moreover, the extent of care giving activities undertaken was positively correlated with caregiver burden scores. While positive impact of the care giving process on family relations decreased caregiver burden; negative effect increased the burden. This study suggests that caregiver burden of primary caregivers caring for peripheral blood stem cell transplantation patients varies by education, income status, and the extent of care giving activities undertaken. Changes in family ties and relations due to care giving effected caregiver burden. Copyright © 2014 Elsevier Ltd. All rights reserved.

Predictors of caregiver burden in Iranian family caregivers of cancer patients.

PubMed

Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh

2017-01-01

Caregiver burden threatens the psychological, emotional, functional and even physical health of caregivers. The aims of this study were to determine caregiver burden and family distress and the relationship between them, also to explore predictors of caregiver burden in a sample of Iranian family caregivers of cancer patients. This is a cross-sectional study with correlational design. A total of 104 family caregivers of cancer patients were asked to respond to the Caregiver Burden Inventory (CBI) and the Family Distress Index (FDI) together with a sociodemographic questionnaire. For evaluating the relationship between CBI and FDI scores, the Pearson's product-moment correlation was used. In addition, multiple linear regression analysis was applied to explore the predictive factors of caregiver burden. A high burden was experienced by almost half of the caregivers (48.1%). The FDI mean score was 9.76 ± 5.40 ranged from 0 to 24. A strong positive correlation was found between the caregiver burden and family distress ( r = 0.76). Multiple linear regression results showed the predictive role of FDI score (β = 0.71, P = 0.001), patient's gender (β = -0.25, P = 0.001), and early cancer diagnosis (β =0.13, P = 0.027) in caregiver burden. They could explain 65% of variance in the level of burden in family caregivers. Family nurses should consider the caregivers burden and vulnerability of families with cancer patient, especially if the patient is a male or has a new diagnosis. They should also design special programs for the whole family as a system that family can adapt to the new situation.

Caregiver burden of Mexican dementia patients: the role of dysexecutive syndrome, sleep disorders, schooling and caregiver depression.

PubMed

Rosas-Carrasco, Óscar; Guerra-Silla, María de Guadalupe; Torres-Arreola, Laura Del Pilar; García-Peña, Carmen; Escamilla-Jiménez, Cristopher Isaac; González-González, César

2014-01-01

As a result of the accelerated growth of the elderly population, reconfiguration of families and member roles, and the increase of mental disorders, it is necessary to investigate the effects of this set of factors on the caregivers of patients with dementia in Mexico. Mental disorders of individuals have a negative impact on their physical and emotional quality of life, leading to greater dependence and making the caring experience a heavy burden. Several studies (none in Mexico) have used either the characteristics of the patient or caregiver to determine the burden, but few studies have included both profiles within a single study. The objective of the present study was to analyze the characteristics of the patients and caregivers associated with caregiver burden. A multicenter study was carried out in six health institutions located in Mexico City, including 175 patients (and their caregivers) diagnosed with different types of dementia. We used the Spanish Caregiver Burden Screen. Descriptive analysis and logistic regressions were used to estimate the effect of the covariates on the caregiver burden. The results showed that patient variables have a greater impact on caregiver burden than caregiver-associated variables. Dysexecutive syndrome, sleep disorders, schooling and caregiver depression are associated with a higher level of caregiver burden. Caregiver burden is a complex phenomenon. The results of the present study showed the need to implement multifactorial interventions targeting the caregiver to reduce the burden, strengthen the skills for patient management to avoid depression, improve patient health, and diminish functional dependence and future hospitalization. © 2013 Japan Geriatrics Society.

Psychological Well-Being of Older Chinese-American Grandparents Caring for Grandchildren.

PubMed

Tang, Fengyan; Xu, Ling; Chi, Iris; Dong, XinQi

2016-11-01

The rapid increase in grandparents caring for grandchildren has received growing attention, but little research has focused on Chinese-American grandparents and their caregiving experiences. Drawing on cross-sectional data from the Population Study of Chinese Elderly-a community-engaged, epidemiological study of Chinese-American adults aged 60 and older, the relationships between caregiving experiences and psychological well-being were examined. Of 2,365 older adults who answered the question about grandparent caregiving, 818 (35%) were designated as caregivers, spending an average of 12 hours a week on childcare. About one in five caregivers reported caregiving burden, pressure, or negative health effect of caregiving. Caregivers had better psychological well-being than noncaregivers, with significantly lower levels of depressive symptoms, anxiety, stress, and loneliness. For caregivers, higher levels of caregiving burden, pressure from adult children, and perceived negative effect were related to greater rates of psychological distress. With a strong cultural expectation of family care, grandparent caregiving is generally associated with positive psychological well-being, but it can also be stressful, especially when older adults feel pressured to provide childcare or that doing so is a burden. The study implies that cultural values and life transitions may shape grandparent caregiving experiences and well-being, indicating the importance of respecting cultural differences in family caregiving. Understanding positive and negative aspects of grandparent caregiving and the underlying mechanisms will help healthcare professionals identify caregivers at risk of psychological distress and provide proper interventions to attenuate negative outcomes while maximizing positive experiences for Chinese-American older adults. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Course and predictors of depressive symptoms among family caregivers of terminally ill cancer patients until their death.

PubMed

Tang, Siew Tzuh; Chang, Wen-Cheng; Chen, Jen-Shi; Wang, Hung-Ming; Shen, Wen Chi; Li, Chung-Yi; Liao, Yen-Chi

2013-06-01

Few studies have investigated the impact of providing end-of-life care on family caregivers' depressive symptoms over time, especially until the patient's death. The purpose of this study was to identify the course and predictors of depressive symptoms in caregivers of terminally ill cancer patients until they died. For this prospective, longitudinal study of 193 caregivers, data were collected using the Center for Epidemiological Studies Depression Scale, Symptom Distress Scale, Medical Outcomes Study Social Support Survey, and Caregiver Reaction Assessment scale. The course and predictors of depressive symptoms were analyzed using the generalized estimating equation model. Caregivers' depressive symptoms increased as the patient's death approached. Spousal or adult child family caregivers suffered more depressive symptoms if they self-identified as lacking social support and confidence in offering substantial assistance for younger terminally ill cancer patients with higher levels of symptom distress. Caregivers were susceptible to higher levels of depressive symptoms if they were heavily burdened by caregiving, that is, experienced more disruptions in schedules, greater health deterioration, stronger sense of family abandonment, and lower caregiver esteem. Psychological well-being of caregivers of terminally ill cancer patients deteriorated in response to progression of the patient's disease and impending death. Effective interventions should be developed and provided to high-risk caregivers as identified in our study. Increasing caregivers' strength of perceived social support, facilitating their confidence in caregiving, and alleviating their subjective burden may lessen the development of depressive symptoms in caregivers of terminally ill cancer patients throughout the dying process. Copyright © 2012 John Wiley & Sons, Ltd.

Reactions to children's transgressions in at-risk caregivers: does mitigating information, type of transgression, or caregiver directive matter?

PubMed

Irwin, Lauren M; Skowronski, John J; Crouch, Julie L; Milner, Joel S; Zengel, Bettina

2014-05-01

This study examined whether caregivers who exhibit high risk for child physical abuse differ from low-risk caregivers in reactions to transgressing children. Caregivers read vignettes describing child transgressions. These vignettes varied in: (a) the type of transgression described (moral, conventional, personal), (b) presentation of transgression-mitigating information (present, absent), and (c) whether a directive to avoid the transgression was in the vignette (yes, no). After reading each vignette, caregivers provided ratings reflecting their: (a) perceptions of transgression wrongness, (b) internal attributions about the transgressing child, (c) perceptions of the transgressing child's hostile intent, (d) own expected negative post-transgression affect, and (e) perceived likelihood of responding to the transgression with discipline that displayed power assertion and/or induction. For moral transgressions (cruelty, dishonesty, hostility, or greed), mitigating information reduced caregiver expectations that they would feel negative affect and, subsequent to the transgression, use disciplinary strategies that display power assertion. These mitigating effects were smaller among at-risk caregivers than among low-risk caregivers. Moreover, when transgressions disobeyed a directive, among low-risk caregivers, mitigating information reduced the expectation that responses to transgressions would include inductive disciplinary strategies, but it did not do so among at-risk caregivers. In certain circumstances, compared to low-risk caregivers, at-risk caregivers expect to be relatively unaffected by transgression-mitigating information. These results suggest that interventions that increase an at-risk caregiver's ability to properly assess and integrate mitigating information may play a role in reducing the caregiver's risk of child physical abuse. Copyright © 2013 Elsevier Ltd. All rights reserved.

Reconciling work and family caregiving among adult-child family caregivers of older people with dementia: effects on role strain and depressive symptoms.

PubMed

Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Chen, Min-Chi; Yang, Pei-Shan

2011-04-01

This paper is a report of a study that examined the effects of work demands, including employment status, work inflexibility and difficulty reconciling work and family caregiving, on role strain and depressive symptoms of adult-child family caregivers of older people with dementia. Family caregivers also employed for pay are known to be affected by work demands, i.e. excessive workload and time pressures. However, few studies have shown how these work demands and reconciliation between work and family caregiving influence caregivers' role strain and depressive symptoms. For this cross-sectional study, secondary data were analysed for 119 adult-child family caregivers of older people with dementia in Taiwan using hierarchical multiple regression. After adjusting for demographic characteristics, resources and role demands overload, family caregivers with full-time jobs (β=0.25, P<0.01) and more difficulty reconciling work and caregiving roles (β=0.36, P<0.01) reported significantly more role strain than family caregivers working part-time or unemployed. Family caregivers with more work inflexibility reported more depressive symptoms (β=0.29, P<0.05). Work demands affected family caregivers' role strain and depressive symptoms. Working full-time and having more difficulty reconciling work and caregiving roles predicted role strain; work inflexibility predicted depressive symptoms. These results can help clinicians identify high-risk groups for role strain and depression. Nurses need to assess family caregivers for work flexibility when screening for high-risk groups and encourage them to reconcile working with family-care responsibilities to reduce role strain. © 2010 Blackwell Publishing Ltd.

Ethnicity, familism and willingness to care: important influences on caregiver mood?

PubMed

Parveen, Sahdia; Morrison, Val; Robinson, Catherine A

2013-01-01

Few studies have to date examined the effects of ethnicity on caregiver motivations, coping responses and mood. This theoretically informed study uses the socio-cultural model of stress and coping to explore these relationships amongst a White-British and British South-Asian caregiver sample. A total of 235 primary family caregivers were recruited for a cross-sectional questionnaire survey; of which 162 were White-British and 73 were British South-Asian. British South-Asian caregivers differed from White-British caregivers on several variables within the stress-coping framework. British South-Asian caregivers were younger, had significantly higher levels of familism, used significantly more behavioural disengagement and religious coping and reported having significantly less support than White-British caregivers. White-British caregivers were more likely to make use of substances and humour as coping methods, and also in these caregivers, familism was significantly related to caregiver depression. Whilst levels of willingness to care did not differ between the two caregiver groups, opposing relationships were seen in the association between willingness to care and caregiver anxiety. Regression analyses found that self-blame explained a significant proportion of variance in South-Asian anxiety and depression, whereas depression amongst White-British caregivers was associated with high use of substances, low use of humour and low mean satisfaction with support. These findings offer support to the socio-cultural model of stress and coping in that coping is associated with two outcomes (anxiety and depression), but motivational factors are also highlighted which have additional implications for the development of culturally specific interventions aimed at reducing caregiver distress.

Caregiver Assessment

ERIC Educational Resources Information Center

Feinberg, Lynn

2008-01-01

Assessment is a critical step in determining appropriate support services. This article discusses "caregiver assessment," a systematic process of gathering information to describe a caregiving situation. Caregiver assessment identifies the particular problems, needs, resources, and strengths of the family caregiver and approaches issues from the…

Effects of Caregiver Status, Coping Styles, and Social Support on the Physical Health of Korean American Caregivers

ERIC Educational Resources Information Center

Kim, Jung-Hyun; Knight, Bob G.

2008-01-01

Purpose: This study investigated direct and indirect effects of caregiver status on the physical health of Korean American caregivers in terms of caregiver coping styles and the quantity and the quality of informal social support. Design and Methods: Using a sample of 87 caregivers and 87 matched noncaregivers, we analyzed a path model, employing…

Statistical Modeling of Caregiver Burden and Distress among Informal Caregivers of Individuals with Amyotrophic Lateral Sclerosis, Alzheimer's Disease, and Cancer

ERIC Educational Resources Information Center

Cumming, John McClure

2011-01-01

Caregiver burden and distress have been associated with informal caregivers. Research findings on the specific aspects of the caregiving role that influence burden are mixed. Factors such as amount of time per day giving care and specific characteristics about the disease progression have been linked to caregiver burden and distress. Other…

The Hard Work of Balancing Employment and Caregiving: What Can Canadian Employers Do to Help?

PubMed Central

Lilly, Meredith B.

2011-01-01

As a result of population aging and changing family structures, more Canadians than ever are balancing careers with family caregiving responsibilities. Previous research has suggested that different policy responses are required to support caregivers, depending on the intensity of their caregiving contributions. This discussion paper focuses on needed workplace supports for family caregivers in Canada, with a specific emphasis on the role for employers. Outlined are challenges faced by caregiving employees, the ways in which employers and governments are already supporting caregivers internationally, and options for how Canadian employers might participate in creating caregiver-friendly workplaces. PMID:23115566

Meaning in caregiving and its contribution to caregiver well-being.

PubMed

Noonan, A E; Tennstedt, S L

1997-12-01

This multivariate study examined the relationship between meaning in caregiving--positive beliefs about the caregiving situation and the self as caregiver--and the psychological well-being of 131 informal caregivers to community-residing frail elders. Measures of well-being included depression, self-esteem, mastery, role captivity, and loss of self. Meaning in caregiving explained a significant portion of the differences in depression and self-esteem scores even after demographic and stressor variables had been controlled. Meaning was not related to mastery, role captivity, or loss of self. The conceptual parameters of meaning in caregiving are discussed, as are directions for future research.

Association Between Traumatic Brain Injury-Related Brain Lesions and Long-term Caregiver Burden.

PubMed

Guevara, Andrea Brioschi; Demonet, Jean-Francois; Polejaeva, Elena; Knutson, Kristine M; Wassermann, Eric M; Grafman, Jordan; Krueger, Frank

2016-01-01

To investigate the association between traumatic brain injury (TBI)-related brain lesions and long-term caregiver burden in relation to dysexecutive syndrome. National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland. A total of 256 participants: 105 combat veterans with TBI, 23 healthy control combat veterans (HCv), and 128 caregivers. Caregiver burden assessed by the Zarit Burden Interview at 40 years postinjury. Participants with penetrating TBI were compared with HCv on perceived caregiver burden and neuropsychological assessment measures. Data of computed tomographic scans (overlay lesion maps of participants with a penetrating TBI whose caregivers have a significantly high burden) and behavioral statistical analyses were combined to identify brain lesions associated with caregiver burden. Burden was greater in caregivers of veterans with TBI than in caregivers of HCv. Caregivers of participants with lesions affecting cognitive and behavioral indicators of dysexecutive syndrome (ie, left dorsolateral prefrontal cortex and dorsal anterior cingulate cortex) showed greater long-term burden than caregivers of participants with lesions elsewhere in the brain. The TBI-related brain lesions have a lasting effect on long-term caregiver burden due to cognitive and behavioral factors associated with dysexecutive syndrome.

Caregiver Life Satisfaction: Relationship to Youth Symptom Severity through Treatment

PubMed Central

Athay, M. Michele

2013-01-01

Objective This study utilized the Satisfaction with Life Scale (SWLS) to investigate the life satisfaction of caregivers for youth receiving mental health services (N = 383), specifically how it relates to youth symptom severity throughout treatment. Method Hierarchical linear modeling (HLM) with a time-varying covariate was used to estimate the linear trajectory of caregiver life satisfaction and how it relates to youth symptom severity as rated by caregivers, youth, and clinicians. Results Initial caregiver life satisfaction was inversely related to caregiver and clinician rated youth symptom severity. Additionally, subsequent caregiver life satisfaction demonstrated a small but significant relationship to changes in youth symptom severity during treatment where a decrease in youth symptoms corresponded to an increase in caregiver life satisfaction, and vice versa. Caregiver background characteristics related to higher life satisfaction include being: married, a birth-parent, under 40 years old and having the absence of previous diagnoses of an emotional, behavioral or substance use disorder. Conclusion Caregivers of clinically-referred youth report low levels of life satisfaction throughout youth treatment. Given the bi-directional influences on one another, tending to the well-being of caregivers may positively influence both caregivers and youths. PMID:22571285

Understanding How to Support Family Caregivers of Seniors with Complex Needs.

PubMed

Charles, Lesley; Brémault-Phillips, Suzette; Parmar, Jasneet; Johnson, Melissa; Sacrey, Lori-Ann

2017-06-01

The purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them. A CIHR-funded, two-day conference entitled "Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes" was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provision of caregiver supports. Day 2 focused on determination of research priorities. Identified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving. A better understanding of the needs of family caregivers and ways to support them is critical to seniors' health services redesign.

Emotional reactivity to daily life stress in spousal caregivers of people with dementia: An experience sampling study.

PubMed

van Knippenberg, Rosalia J M; de Vugt, Marjolein E; Ponds, Rudolf W; Verhey, Frans R J; Myin-Germeys, Inez

2018-01-01

Caregivers differ in their emotional response when facing difficult situations during the caregiving process. Individual differences in vulnerabilities and resources could play an exacerbating or buffering role in caregivers' reactivity to daily life stress. This study examines which caregiver characteristics modify emotional stress reactivity in dementia caregivers. Thirty caregivers collected momentary data, as based on the experience sampling methodology, to assess (1) appraised subjective stress related to events and minor disturbances in daily life, and (2) emotional reactivity to these daily life stressors, conceptualized as changes in negative affect. Caregiver characteristics (i.e. vulnerabilities and resources) were administered retrospectively. Caregivers who more frequently used the coping strategies 'seeking distraction', 'seeking social support', and 'fostering reassuring thoughts' experienced less emotional reactivity towards stressful daily events. A higher educational level and a higher sense of competence and mastery lowered emotional reactivity towards minor disturbances in daily life. No effects were found for age, gender, and hours of care and contact with the person with dementia. Caregiver resources can impact emotional reactivity to daily life stress. Interventions aimed at empowerment of caregiver resources, such as sense of competence, mastery, and coping, could help to reduce stress reactivity in dementia caregivers.

Moderating role of positive aspects of caregiving in the relationship between depression in persons with Alzheimer's disease and caregiver burden.

PubMed

Xue, Haihong; Zhai, Junwei; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

2018-03-01

Improving caregivers' positive perception of their role may be important in reducing their subjective burden when caring for Alzheimer's disease (AD) patients with depression. The purpose of present study was to explore the moderating role of the positive aspects of caregiving (PAC) on the subjective burden on family caregivers when managing depressive behaviors. We conducted a cross-sectional study including 200 pairs of patients with mild AD and their caregivers from three communities and two hospitals in Taiyuan, China in October 2014. The latent variable interaction model based on a two stage least squares (2SLS) regression was fitted. A significant moderating effect of the PAC was found on the relationship between depression in patients with AD and the caregiver burden they cause. Caregivers dealing with patients with low levels of depression but with high levels of the PAC had significantly lower levels of caregiver burden compared to those caregivers with the low levels of PAC. Continuously detecting the patient's mental state combined with caregivers having an optimistic attitude towards life may improve the quality of life for both patients and caregivers. Copyright © 2018 Elsevier B.V. All rights reserved.

A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach.

PubMed

Sherman, Deborah W; McGuire, Deborah B; Free, David; Cheon, Joo Young

2014-09-01

Pancreatic cancer presents a wide spectrum of significant symptomatology. The high symptom burden, coupled with a rapidly fatal diagnosis, limits preparation or time for adjustment for both patients and their family caregivers. From the initial diagnosis and throughout the illness experience, the physical and emotional demands of caregiving can predispose caregivers themselves to illness and a greater risk of mortality. Understanding the negative and positive aspects of caregiving for patients with advanced pancreatic cancer will inform interventions that promote positive caregiver outcomes and support caregivers in their role. To provide feasibility data for a larger, mixed methods, longitudinal study focused on the experience of family caregivers of patients with advanced pancreatic cancer and preliminary qualitative data to substantiate the significance of studying this caregiver population. This was a mixed methods study guided by the Stress Process Model. Eight family caregivers of patients with advanced pancreatic cancer from oncology practices of a university-affiliated medical center were surveyed. The pilot results supported the ability to recruit and retain participants and informed recruitment and data collection procedures. The qualitative results provided preliminary insights into caregiver experiences during the diagnosis and treatment phases. Key findings that substantiated the significance of studying these caregivers included the caregiving context of the history of sentinel symptoms, the crisis of diagnosis, the violation of assumptions about life and health, recognition of the circle of association, and contextual factors, as well as primary and secondary stressors, coping strategies, resources, discoveries, gains and growth, associated changes/transitions, and unmet caregiver needs. Findings indicated caregivers' willingness to participate in research, highlighted the negative and positive aspects of the caregiver experience, and reinforced the significance of the future study and the need to develop interventions to support family caregivers in their roles. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Feeding styles of caregivers of children 6-23 months of age in Derashe special district, Southern Ethiopia

PubMed Central

2012-01-01

Background Apart from basic determinants, appropriate child care practices are important in prevention of growth faltering and undernutrition. Providing safe and appropriate quality complementary foods is crucial to child growth and development. However, some children in low-income communities grow normally mainly due to proper caregiver feeding behaviors. Hence, the objective of this study was to determine caregivers' feeding styles as well as to indentify predictors in Derashe special district, Southern Ethiopia. Methods A community based cross-sectional study design was employed in the seven randomly selected Kebeles (smallest administrative unit) of Derashe special district. A total of 826 caregivers provided data pertaining to socio-demographic variables. However, 764 caregivers had complete data for the outcome variable (caregiver feeding style). A multistage stratified sampling technique was used to identify study subjects. An adapted Caregiver's Feeding Styles Questionnaire (CFSQ) was used to gather information about caregivers' feeding styles. Multivariate multinomial logistic regression was employed to identify predictors of caregivers' feeding style. Results The majority (80.6%) of caregivers were biological mothers. Nearly seventy-six percent of the caregivers practiced a responsive feeding style. Caregivers other than the biological mother favoured a laissez-faire feeding style, while caregivers residing in rural Kebeles were more responsive. Caregivers with a breastfeeding frequency of more than eight times predicted both laissez-faire (RRR = 1.88; 95% CI = 1.03-3.41) and controlling (RRR = 1.7; 95% CI = 1.02-2.85) feeding styles as compared to responsive feeding. Conclusion Responsive feeding was the commonest style practiced by the caregivers. Many of the caregivers who were rural residents and birth parents have been responsive in child feeding. The instruments needed to be validated in the Ethiopian context and an additional prospective study based on direct observation of caregiver-child interactions is recommended. PMID:22439749

The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States.

PubMed

Al Sawah, S; Daly, R P; Foster, S A; Naegeli, A N; Benjamin, K; Doll, H; Bond, G; Moshkovich, O; Alarcón, G S

2017-01-01

Lupus imposes a substantial burden on patients; however, little is known about its impact on those caring for patients with the disease. In this study, we examined the impact 'caring for patients with lupus' has on caregivers from their own perspective. UNVEIL was a one-time online national cross-sectional survey developed in partnership with the Lupus Foundation of America and fielded targeting the US Lupus Foundation of America constituents in 2014. Eligible caregivers were adults who self-identified as unpaid caregivers of patients with lupus. Eligible caregivers had to complete a series of sociodemographic questions as well as a series of well established outcome measures, such as the Short Form 12v2 Health Survey, the Work Productivity and Activity Index, the Caregiver Burden Inventory, and the Perceived Benefits of Caregiving Scale. A total of 253 caregivers completed the survey. The majority of caregivers (90.1%) were aged 60 years or younger, more than half (54.2%) were men, and more than half (59.7%) identified themselves as either a spouse or a partner to the patient with lupus they were caring for. Overall health-related quality of life was close to the norm mean of the general US population. Caregivers who were employed missed an average of 12.8% of paid work time due to caregiving responsibilities and reported a 33.5% reduction in on-the-job effectiveness. Nearly half of the caregivers surveyed (49.4%) indicated that their caregiving responsibilities impacted their ability to socialize with friends, and almost all caregivers (97.6%) reported experiencing increased anxiety and stress in relation to their caregiving role. Caregiving for patients with lupus has a substantial impact on the work productivity and the social and emotional functioning of caregivers. Healthcare professionals and policymakers should continually assess the impact of healthcare decisions on the well-being of those caring for patients with lupus. © The Author(s) 2016.

Mental health and morbidity of caregivers and co-residents of individuals with dementia: a quasi-experimental design.

PubMed

Maguire, Aideen; Rosato, Michael; O'Reilly, Dermot

2017-10-01

To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared with co-resident non-caregivers. A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms provides a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms. Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared with co-resident non-caregivers, adjusting for the clustering of individuals within households. The cohort consisted of 10 982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared with 8.4% of intense caregivers (>20 h of care per week). During follow-up, the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (adjusted odds ratio (ORadj) = 0.93, 95% confidence interval (CI) 0.79, 1.10 and ORadj = 0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj = 0.65, 95% CI 0.53, 0.79). Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia and is associated with a lower mortality risk compared with non-caregiving co-residents. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Predicting Future Commitment to Care for Frail Parents Among Employed Caregivers.

PubMed

Lechner, Viola M

1992-06-01

A study of 133 full time employees with parent care responsibilities investigated various factors that could reduce this group's future caregiving commitment to aging parents. Study factors included: caregiver attributes, level of caregiving involvement, job stress, tensions between the caregiver and the dependent parent, caregiver's level of physical and mental strain, and limited support from family and friends. The relationship between the caregiver and the parent was the best predictor of sustained commitment to caregiving. One aspect of the employees' work experience made a small, but important contribution to respondents' future care plans. Those employees who frequently adjusted their work schedule and routine to accommodate parent care demands were less likely to sustain their caregiving commitment. Reasons for these findings are explored and implications for social policy and clinical practice are discussed.

Work productivity and health of informal caregivers of persons with advanced cancer.

PubMed

Mazanec, Susan R; Daly, Barbara J; Douglas, Sara L; Lipson, Amy R

2011-12-01

The purpose of this study was to describe health promotion behaviors and work productivity loss in informal caregivers of individuals with advanced stage cancer. Using a cross-sectional, correlational design, 70 caregivers completed measures of health behaviors, mood, social support, and burden. Absenteeism and presenteeism were evaluated in employed caregivers (n = 40). Caregivers reported low levels of physical activity. The mean percentage of work productivity loss due to caregiving was 22.9%. Greater work productivity loss was associated with greater number of caregiving hours, higher cancer stage, married status, and greater anxiety, depression, and burden related to financial problems, disrupted schedule, and health. Nurses should assess caregivers and provide health promotion interventions, which may ultimately reduce the economic impact of caregiving. Copyright © 2011 Wiley Periodicals, Inc.

Distress in cancer patients and their caregivers and association with the caregivers' perception of dyadic communication.

PubMed

Haun, Markus W; Sklenarova, Halina; Brechtel, Anette; Herzog, Wolfgang; Hartmann, Mechthild

2014-01-01

Discrepancies within cancer-affected couples can disrupt security within the dyadic relationship during cancer treatment. This study investigated the patients' and caregivers' distress and associations between the caregivers' perception of the patients' degree of open communication and their distress. In a cross-sectional survey, 189 pairs of cancer patients (31% gastrointestinal, 34% lung, 35% urological cancers) and their partners were assessed for distress (QSC-R10), depression and anxiety (PHQ-2/GAD-2). The caregivers also reported their perception of the patients' degree of disclosure regarding cancer-relevant topics (CCAT-F Disclosure subscale), caregiver strain (CSI), and unmet needs (SCNS-P&C). Prevalences of clinically significant distress were calculated. Associations were calculated between the caregivers' and the patients' ratings and between the caregivers' distress and their perception of the patients' degree of disclosure. 33% of the caregivers and 25% of the patients exhibited significant anxiety, with a tendency towards a higher frequency in the caregivers (p = 0.10). The prevalence of depression was lower but equally high in caregivers and patients. The caregivers' perceived non-disclosure by the patients was primarily associated with their anxiety (r = 0.31), disease-specific distress (r = 0.32), and psychological/emotional needs (r = 0.35). The identification of caregivers reporting problems in communicating with patients should be pursued in clinical practice as this might indicate that caregivers are particularly burdened. © 2014 S. Karger GmbH, Freiburg.

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients.

PubMed

Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong

2014-05-01

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.

Caring for the caregivers: an investigation of factors related to well-being among parents caring for a child with Smith-Magenis syndrome.

PubMed

Foster, Rebecca H; Kozachek, Stephanie; Stern, Marilyn; Elsea, Sarah H

2010-04-01

Smith-Magenis syndrome (SMS) is a complex disorder characterized by numerous challenges, including intellectual disability, speech delay, decreased pain sensitivity, sleep disturbances, hyperactivity, mood instability, and self-injury. Caregivers must readily adapt to the ever-changing needs of the child. Due to these demands, caregivers may encounter difficulties maintaining their own level of well-being. Thus, a total of 112 primary caregivers (i.e., parents) of individuals diagnosed with SMS responded to online questionnaires to assess demographic and psychosocial factors, such as perceptions of child health vulnerability, benefit finding, sleep behaviors, anxiety and depression symptomatology, and caregiver satisfaction and self-efficacy, which may be related to caregiver well-being. Results show that, among mothers, caregiver well-being was directly related to perceived child health vulnerability, caregiver satisfaction, and benefit finding, and a significant moderating effect was observed for depression/anxiety counseling after beginning the caregiver role on the relationship between anxiety symptomatology and caregiver well-being. Results further suggest that maternal caregivers who report high levels of anxiety but do not seek counseling fair the worst in terms of well-being. Among fathers, lower depression symptoms and greater benefit finding were related to higher levels of caregiver well-being. These data show that many factors play roles in influencing coping and well-being among SMS caregivers. Investigating these variables and relationships may reveal additional resources and interventions to assist primary caregivers.

The consequence of "doing nothing": Family caregiving for Alzheimer's disease as non-action in the US.

PubMed

Seaman, Aaron T

2018-01-01

This article adopts a discursive approach in order to examine how dominant US discourses shape both public and personal understandings of the caregiving work that families do, specifically in the context of Alzheimer's disease (AD). Family caregivers are an essential, increasingly recognized piece of the US health care system. Dominant discourses of AD and caregiving articulate family caregiving in contrast to biomedical intervention. The dichotomy privileges the ability to affect a biomedical outcome and, using that metric, minimizes caregiving's potential value as meaningful action. Family caregiving comes to be seen as what I term non-action, action that, while voluminous, is not perceived as meaningful in terms of its outcome. Drawing on over 26 months of ethnographic fieldwork in the Midwestern US with families living with early-onset AD (2011-2013), I focus on spousal caregivers to trace how these discourses shape the possibilities for family caregiving. I show how advocacy rhetoric is taken up and reproduced by family members, who learn to see their own caregiving labor through a biomedical lens. However, I also demonstrate that, obscured by dominant discourses, caregivers engage in relational labor, the continual work of making and unmaking social relations. Recognition of caregiving as part of longer-term relational endeavors, I argue, offers the potential to reframe caregiving discourses and reimagine the value the labor of caregiving as meaningful in its own right. Copyright © 2017 Elsevier Ltd. All rights reserved.

Perception of medical care systems and stress responses in preschoolers' caregivers at a pediatric emergency department in Taiwan.

PubMed

Kao, Jun-Kai; Cherng, Chian-Fang G; Tsai, Ru-Chiao; Tsao, Lon-Yen; Hung, Chin-Yi

2012-11-01

This study was undertaken to understand caregivers' perception of medical care systems and their stress responses throughout their stay with preschoolers at a pediatric emergency department (ED). Overall, 201 preschoolers' caregivers in pediatric ED were recruited in this study. They were asked to answer self-made questionnaires regarding the perception of medical care systems and their stress responses immediately before preschoolers' release. The results show that caregivers with a low education or low income level were prone to exhibit greater appreciation for the efficiency of medical care systems and greater degree of anxiety for their lack of treatment and care knowledge than those of caregivers with a high education or high income level. Interestingly, caregivers older than 38 years reported greater emotional responses and physical exhaustion than did younger caregivers. Immigrant caregivers had higher emotional reaction and lower concentration than did Taiwanese caregivers. Paradoxically, caregivers undergoing over 3-time pediatric ED visits for observation expressed stronger stress reactions as compared with caregivers with less observation experiences. Not surprisingly, caregivers reported the highest emotional responses when their preschoolers were diagnosed as having very urgent degree in triage classification. Finally, caregivers' perception of "lack of family support" and "lack of treatment and care knowledge" correlated positively with all aspects of the stress responses. These results indicate that attention should be paid to the specific psychological weakness and need for the caregivers with certain demographic characteristics by the medical team in pediatric ED.

Psychological impact on caregivers of HIV-infected children in Udupi district, Karnataka.

PubMed

Asadullah, Md; Kamath, Ramachandra; Pattanshetty, Sanjay; Andrews, Teddy; Nair, N Sreekumaran

2017-06-01

Caregivers of children living with HIV/AIDS (CLWHA) face unique challenges due to disease-related stigma and discrimination, isolation from society, financial constraints, grief and mortality of loved one. A descriptive cross-sectional study was conducted at Udupi ART centre to assess the caregiver burden, psychological distress and their associated factors among the caregivers of CLWHA in Udupi District. The convenience sampling technique was used to collect the data from 171 caregivers and analysed with the help of SPSS version 15.0. Majority of caregivers were female (64.9%) with mean age of 38.1  ±  9.6 years. About 64.3% caregivers were HIV-positive and 63.2% were biological parents of CLWHA. Mild-to-severe caregiver burden on Zarit Burden Inventory (ZBI) was reported among 84.8% of caregivers, and mild-to-severe psychological distress on General Health Questionnaire (GHQ-12) was reported among 49.7% caregivers. Relationship with child was found to be a significant predictor of caregiver burden as compared to other relatives/foster (P < 0.001). Relationship with child (P 0.004), Alcohol use (P 0.008) and Schooling of children (P 0.049) were reported as significant predictors of psychological distress. Study concludes that caregiver burden and psychological distress were high among caregivers of CLWHA. Psychological problems of caregivers need to be addressed and integrated along with the clinical care of HIV-infected children at ART centres.

Caregiver reports of patient-initiated violence in psychosis.

PubMed

Onwumere, Juliana; Grice, Sarah; Garety, Philippa; Bebbington, Paul; Dunn, Graham; Freeman, Daniel; Fowler, David; Kuipers, Elizabeth

2014-07-01

Aggressive behaviour in psychosis is not uncommon. Community provision for people with psychosis has left informal caregivers to take on a greater role in their care. However, few studies have explored links between patient-initiated violence in mental health caregiving relationships and caregiver functioning. Our study investigated caregiver reports of aggressive acts committed by their relative with psychosis and their links to caregiver appraisals of the caregiving relationship and caregiver outcomes. Caregivers of patients with a recent relapse of psychosis, recruited to a psychological therapy trial, completed the audiotaped Camberwell Family Interview at baseline. This semi-structured interview includes questions on the quality of the relationship between caregiver and patient, and patient history of violence. Seventy-two transcripts of interviews were assessed for reports of patient-initiated violence. One-half of the caregiver sample (52.9%) reported an incident of patient-initiated violence during their interview; 62.2% of these involved violence toward themselves, and 24.3% toward property. Reports of patient violence were associated with caregiver ratings of hostility expressed toward patients, lower self-esteem, and emotion-focused coping. People caring on their own were more likely to report incidents of patient violence. Younger patients, males, and inpatients were more frequently identified as having a history of this kind of violence. Our findings suggested that caregiver reports of patient-initiated violence in psychosis are not uncommon. Mental health staff need to be aware of the risks of such violence for caregivers of people with psychosis, and consider appropriate procedures for minimizing it.

Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India.

PubMed

Sinha, P; Desai, N G; Prakash, O; Kushwaha, S; Tripathi, C B

2017-04-01

Caregiver burden in dementia is an important area of research. Providing care for a relative can be a potent source of chronic stress and can have deleterious consequences for both the physical and emotional health of caregivers. This study aims to evaluate the burden of care in caregivers of patients with Alzheimer-type dementia and compare it with elderly psychosis; and to also study the factors that influence burden of care in Alzheimer's dementia. Thirty-two caregiver-patient dyads of Alzheimer-type dementia were compared with thirty-two caregiver-patient dyads of psychosis. Cognitive assessment, abilities to perform activities of daily living and severity of dementia was assessed in the patients. Zarit Burden Interview was used to study the caregiver burden in both groups. The mean burden score in dementia caregivers was high at 47.7, whereas the mean burden score for elderly psychosis caregivers was lesser at 33.6, and this difference in mean burden scores was found to be statistically significant. Spouses had the highest mean burden scores of 53.48. Caregiver burden in dementia was positively correlated with cognitive impairment and inability to carry out ADLs. Presence of psychological distress in caregivers was also an indicator for greater caregiver burden in dementia. The study revealed that dementia carries a greater caregiver burden when compared with elderly patients with psychosis. Innovative interventions are needed to remove burden from caregiving, making it a meaningful practice integral to the Indian society. Copyright © 2017 Elsevier B.V. All rights reserved.

Employment implications of informal cancer caregiving.

PubMed

de Moor, Janet S; Dowling, Emily C; Ekwueme, Donatus U; Guy, Gery P; Rodriguez, Juan; Virgo, Katherine S; Han, Xuesong; Kent, Erin E; Li, Chunyu; Litzelman, Kristen; McNeel, Timothy S; Liu, Benmei; Yabroff, K Robin

2017-02-01

Previous research describing how informal cancer caregiving impacts employment has been conducted in small samples or a single disease site. This paper provides population-based estimates of the effect of informal cancer caregiving on employment and characterizes employment changes made by caregivers. The samples included cancer survivors with a friend or family caregiver, participating in either the Medical Expenditure Panel Survey Experiences with Cancer Survivorship Survey (ECSS) (n = 458) or the LIVESTRONG 2012 Survey for People Affected by Cancer (SPAC) (n = 4706). Descriptive statistics characterized the sample of survivors and their caregivers' employment changes. Multivariable logistic regression identified predictors of caregivers' extended employment changes, comprising time off and changes to hours, duties, or employment status. Among survivors with an informal caregiver, 25 % from the ECSS and 29 % from the SPAC reported that their caregivers made extended employment changes. Approximately 8 % of survivors had caregivers who took time off from work lasting ≥2 months. Caregivers who made extended employment changes were more likely to care for survivors: treated with chemotherapy or transplant; closer to diagnosis or end of treatment; who experienced functional limitations; and made work changes due to cancer themselves compared to caregivers who did not make extended employment changes. Many informal cancer caregivers make employment changes to provide care during survivors' treatment and recovery. This study describes cancer caregiving in a prevalent sample of cancer survivors, thereby reflecting the experiences of individuals with many different cancer types and places in the cancer treatment trajectory.

Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study.

PubMed

Altschuler, Andrea; Liljestrand, Petra; Grant, Marcia; Hornbrook, Mark C; Krouse, Robert S; McMullen, Carmit K

2018-02-01

The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving. We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews. Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving. Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

The Influences of Child Intelligibility and Rate on Caregiver Responses to Toddlers With and Without Cleft Palate.

PubMed

Frey, Jennifer R; Kaiser, Ann P; Scherer, Nancy J

2018-02-01

The purpose of this study was to investigate the influences of child speech intelligibility and rate on caregivers' linguistic responses. This study compared the language use of children with cleft palate with or without cleft lip (CP±L) and their caregivers' responses. Descriptive analyses of children's language and caregivers' responses and a multilevel analysis of caregiver responsivity were conducted to determine whether there were differences in children's productive language and caregivers' responses to different types of child utterances. Play-based caregiver-child interactions were video recorded in a clinic setting. Thirty-eight children (19 toddlers with nonsyndromic repaired CP±L and 19 toddlers with typical language development) between 17 and 37 months old and their primary caregivers participated. Child and caregiver measures were obtained from transcribed and coded video recordings and included the rate, total number of words, and number of different words spoken by children and their caregivers, intelligibility of child utterances, and form of caregiver responses. Findings from this study suggest caregivers are highly responsive to toddlers' communication attempts, regardless of the intelligibility of those utterances. However, opportunities to respond were fewer for children with CP±L. Significant differences were observed in children's intelligibility and productive language and in caregivers' use of questions in response to unintelligible utterances of children with and without CP±L. This study provides information about differences in children with CP±L's language use and caregivers' responses to spoken language of toddlers with and without CP±L.

Gender Differences in Caregiving at End of Life: Implications for Hospice Teams

PubMed Central

Washington, Karla T.; Pike, Kenneth C.; Parker Oliver, Debra; Albright, David L.; Lewis, Alexandria M.

2015-01-01

Abstract Background: Researchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist. Objective: The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender. Methods: We conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ2 tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA). Results: As it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances. Conclusions: Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life. PMID:26484426

Enhancing preparedness and satisfaction of caregivers of patients discharged from an inpatient rehabilitation facility using an interactive website.

PubMed

Stone, Karon

2014-01-01

Research indicates a need for improved caregiver preparation to provide care following a patient's discharge from inpatient rehabilitation. The aim of this project was to test the use of web-based resources to enhance the preparedness and satisfaction of such caregivers. A website was provided to caregivers with resources and e-mail access to a rehabilitation nurse practitioner. Care recipients had the following diagnoses: stroke, amputation, trauma/orthopedic, brain injury or debility. Preparedness for caregiving was assessed before utilization of the website and after discharge. Satisfaction of the resources was assessed after discharge. Measures included the Preparedness for Caregiver Scale and the Client Satisfaction Questionnaire. Seventy caregivers completed the predischarge preparedness tool. Thirty returned both tools postdischarge. Analysis of pre-post test data indicated increased preparedness to provide care after resource use, no increase meeting the caregiver's personal needs, and satisfaction with the resources provided. The caregivers of brain-injured patients reported less preparation as caregivers than those who cared for patients with other diagnoses. Although high interest was reported in using e-mail with the nurse practitioner, the resource was not utilized. This preliminary study supports the clinical relevance of Internet resources to improve caregiver preparation. With shortened hospital stays, providing applicable and evidence-based websites and other online services for caregivers can complement other healthcare services. More research focused on preparing caregivers and supporting personal caregiver needs is needed to evaluate the impact on overall rehabilitation outcomes. © 2013 Association of Rehabilitation Nurses.

[Caregivers' views of the treating psychiatrists: coping resource or additional burden?].

PubMed

Jungbauer, Johannes; Wittmund, Bettina; Angermeyer, Matthias C

2002-09-01

This study aimed at investigating how caregivers of schizophrenic patients perceive the contact with mental health professionals and which are the key factors for their satisfaction or dissatisfaction. 42 in-depth interviews were analysed with a view to discover the caregivers' experiences with psychiatric treatment. The analysis of the interview data showed three fundamental areas in which caregivers perceive the contact with psychiatrists as supportive or troublesome: 1. the information about the disease and the treatment, 2. the long-term cooperation with the caregivers, and 3. the general way of behaving towards the caregivers and the patients. Caregivers' attitudes towards psychiatry are strongly influenced by positive and negative experiences they have had in these three fields. The widespread criticism of caregivers is caused by dissatisfaction with central areas of psychiatric practice. Optimal treatment and consulting conditions, from the caregivers' perspective, can only be approximately achieved. However, psychiatrists, patients, and caregivers should stay in close contact in order to meet the needs of the caregivers, such as being informed, being taken seriously and being involved in the treatment.

Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong.

PubMed

Chan, Christopher L F; Chui, Ernest W T

2011-05-01

The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners. A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden. Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden. These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

Caregivers for older adults: Prevalence, characteristics, and health care utilization and expenditures.

PubMed

Musich, Shirley; Wang, Shaohung S; Kraemer, Sandra; Hawkins, Kevin; Wicker, Ellen

The purpose of this study was to provide an overview of caregiver prevalence and characteristics and to estimate the impact of caregiving on health care utilization and expenditures among AARP ® Medicare Supplement insureds to inform caregiver intervention strategies. A subgroup with live-in partners was used to investigate the additional effect of live-in health status on caregiver health. Multivariate regression models were utilized to determine caregivers' characteristics and associated impacts on their health care utilization and expenditures. Among respondents (n = 18,928), 14.9% self-identified as caregivers. The strongest characteristics included being younger, healthier, but reporting depression or loneliness. Caregivers of sicker live-ins were female, older and indicated moderate loneliness; caregivers of healthier live-ins were younger, healthier, but reported severe loneliness. Caregivers had significantly lower inpatient admissions and medical and prescription drug expenditures. These results indicated an adverse impact on psychological health associated with caregiving but no evidence of a negative impact on physical health. Copyright © 2016 The Author(s). Published by Elsevier Inc. All rights reserved.

Resilience in Caregivers of Partners With Young Onset Dementia: A Concept Analysis.

PubMed

Kobiske, Karie R; Bekhet, Abir K

2018-05-01

Over 200,000 Americans diagnosed with young onset dementia (YOD), dementia diagnosed prior to age 65, are cared for by family members. This can be costly to caregivers' physical and psychological health. Some adapt well to the caregiver role and are said to be resilient. Aim/Question: This paper builds on current understanding of the concept of resilience and applies this to caregivers of partners diagnosed with YOD. Concept analysis. Resilient caregivers exhibit attributes including determination, flexibility, positive thinking, self-efficacy, resourcefulness, social support and spirituality. YOD affects caregiver's health. Much research has been done on interventions for dementia caregivers. These interventions do not necessarily meet the needs of YOD caregivers as they do not account for dynamics in the family. By recognizing what is resiliency in YOD caregivers, interventions can be developed that focus on characteristics that build these attributes. Understanding the concept of resilience related to caregiving for a partner diagnosed with YOD allows for future development, measurement, and evaluation of nursing interventions. Nursing staff are in a strategic position to provide effective interventions to enhance resilience among caregivers of YOD.

Religious Involvement and Adaptation in Female Family Caregivers.

PubMed

Koenig, Harold G; Nelson, Bruce; Shaw, Sally F; Saxena, Salil; Cohen, Harvey Jay

2016-03-01

To examine the relationship between religious involvement (RI) and adaptation of women caring for family members with severe physical or neurological disability. Two-site cross-sectional study. Community. A convenience sample of 251 caregivers was recruited. RI and caregiver adaptation (assessed by perceived stress, caregiver burden, and depressive symptoms) were measured using standard scales, along with caregiver characteristics, social support, and health behaviors. Bivariate and multivariate analyses were conducted to identify relationships and mediating and moderating factors. Religious involvement (RI) was associated with better caregiver adaptation independent of age, race, education, caregiver health, care recipient's health, social support, and health behaviors (B = -0.09, standard error = 0.04, t = -2.08, P = .04). This association was strongest in caregivers aged 58-75 and spouses and for perceived stress in blacks. Religious involvement (RI) in female caregivers is associated with better caregiver adaptation, especially for those who are older, spouses of the care recipients, and blacks. These results are relevant to the development of future interventions that provide support to family caregivers. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China.

PubMed

Hu, Xiaolin; Dolansky, Mary A; Hu, Xiuying; Zhang, Fengying; Qu, Moying

2016-03-01

We investigated the status of caregiver burden and identified the factors related to caregiver burden among family caregivers of patients with heart failure in southwest China. A cross-sectional descriptive design with a convenience sample was adopted. Patient and family caregiver dyads (n = 226) in four hospitals in Chengdu, China were recruited from June 2013 to July 2014. The instruments used in this study included the Social Support Rating Scale, the Zarit Burden Interview, and the General Self-Efficacy Scale. Multivariate analysis was used to identify the factors associated with caregiver burden. Forty-four percent of the variance of the caregiver burden was explained by the payment type for treatment, monthly family income, relationship to the patient, caregivers' self-efficacy, and social support. The caregiver burden in southwest China was higher than studies conducted in developed areas. Specific to southwest China, the financial burden and insufficient resources are the main factors associated with caregiver burden. The results suggest that self-efficacy and social support in underdeveloped areas are potential areas for future intervention. © 2016 John Wiley & Sons Australia, Ltd.

Justifications for caregiving in white, Asian American, and native Hawaiian grandparents raising grandchildren.

PubMed

Yancura, Loriena A

2013-01-01

Race has been found to predict justifications for caregiving in family caregivers for older adults. However, little is known about this relationship in another type of family caregiver, Grandparents Raising Grandchildren (GRG). This study examined relationships between race and justifications for caregiving in Asian American, Native Hawaiian, and White GRG. A sample of 259 GRG registered as students' primary caregivers with a public school system completed a modified version of the 10-item Cultural Justifications for Caregiving (CJCG) scale. CJCG items did not load onto a single analytic factor. Two factors, custom and responsibility, emerged. Race was predictive of custom, with Native Hawaiian GRG having significantly higher scores than White or Asian American GRG. Native Hawaiian GRG also scored higher than Asian American, but not White, GRG on responsibility. Justifications for raising grandchildren appear to differ among groups based on racial identification. Findings elucidate cultural justification for caregiving in understudied GRG populations and suggest that justifications for caregiving are configured differently in GRG and family caregivers for older adults. Future studies should examine justifications for caregiving in GRG of other races.

Understanding the Influence of the Complex Relationships among Informal and Formal Supports on the Well-Being of Caregivers of Persons with Dementia

ERIC Educational Resources Information Center

Raina, Parminder; McIntyre, Chris; Zhu, Bin; McDowell, Ian; Santaguida, Pasqualina; Kristjansson, Betsy; Hendricks, Alexandra; Massfeller, Helen; Chambers, Larry

2004-01-01

This study examined the direct and indirect relationships between caring for a person with dementia and caregiver health. A conceptual model of the caregiver stress process considered informal caregiver characteristics, sources of caregiver stress, and the influence of informal and formal support on the well-being of the caregivers of persons with…

Associations between advanced cancer patients' survival and family caregiver presence and burden.

PubMed

Dionne-Odom, J Nicholas; Hull, Jay G; Martin, Michelle Y; Lyons, Kathleen Doyle; Prescott, Anna T; Tosteson, Tor; Li, Zhongze; Akyar, Imatullah; Raju, Dheeraj; Bakitas, Marie A

2016-05-01

We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival. © 2016 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

High levels of caregiver burden in Prader-Willi syndrome

PubMed Central

Farrar, Evan; Comtois, Katherine Anne; Strong, Theresa V.

2018-01-01

Objectives Prader-Willi syndrome (PWS) is a rare genetic neurodevelopmental disorder that is characterized by hyperphagia, developmental delay, incomplete sexual development, mild-to-moderate intellectual disability, and a variety of challenging behavioral and psychiatric symptoms. The characteristics of PWS can be difficult for caregivers to cope with and are likely to cause significant and long- term caregiver burden. The current study examined burden in 142 caregivers of children and adults with PWS living in the US using the Zarit Burden Interview (ZBI). The study aimed to measure the level of burden in caregivers of individuals with PWS, to explore the impact of PWS on caregiver quality of life, and to assess ZBI as an indicator of that impact. Results Caregivers participating in this study were predominantly mothers, 30–59 years old, non-Hispanic Whites, married or in a relationship, with an annual household income slightly distributed towards higher income. Nearly 90% of the caregiver`s children with PWS lived at home. Caregivers experienced high caregiver burden with an average ZBI score of 44.4 ± 15.4. ZBI scores were highest for caregivers of teenage and young adult individuals with PWS (49.2 ± 14.6 and 49.2 ± 14.1, respectively), while those caring for older adults (>30) and the youngest age group had lower scores (38.6 ±10.5 and 34.8 ±12.5, respectively). Caregivers reported that caring for a person with PWS negatively impacted their romantic relationship, ability to work, sleep, and mood. Whereas we did not find strong correlations between family income or level of help the caregiver receives and ZBI scores, the results showed significant correlations and a linear relationship between ZBI scores and caregiver depressed mood, feelings of anxiety, negative romantic relationship impact, as well as sleep and work disruption. Conclusions Our study reveals that PWS incurs high caregiver burden and impacts many aspects of the lives of caregiver. We identified the ZBI as a good predictor of that impact. Our findings draw attention to the critical unmet need for support for caregivers of individuals with PWS. PMID:29579119

Family caregivers of older adults on home enteral nutrition have multiple unmet task-related training needs and low overall preparedness for caregiving.

PubMed

Silver, Heidi J; Wellman, Nancy S; Galindo-Ciocon, Daisy; Johnson, Paulette

2004-01-01

We used stress process theory to identify family caregiving variables that are salient to the experience of managing older adults' home enteral nutrition. In this article, we describe the specific tasks family caregivers performed and their unique training needs in the context of caregiver preparedness, competence, effectiveness, and health care use. Hospital billing lists from two university-affiliated institutions in Miami, FL, were used to identify older adults who had enteral tubes placed over a 6-month period. Consent was obtained from those older adults discharged for the first time on home enteral nutrition and their family caregivers at the first scheduled outpatient visit. In-home interviews were conducted with a diverse sample of 30 family caregivers (14 white, 8 Hispanic, 7 African-American, 1 Asian) during their first 3 months (mean=1.83+/-0.69 months) of home enteral nutrition caregiving. Descriptive statistics were used to summarize data for all variables; chi(2) analysis was conducted to analyze differences in categorical variables. One-way analysis of variance was used to analyze mean differences among caregivers grouped by ethnicity for total number of hours and tasks performed. Post hoc comparisons were conducted using the Tukey HSD test. The Spearman rho correlations were calculated to assess bivariate associations between quantitative variables. Caregivers reported providing from 6 to 168 hours of care weekly (mean=61.87+/-49.67 hours), in which they performed an average of 19.73+/-8.09 caregiving tasks daily. Training needs identified were greatest for technical and nutrition-related tasks. Preparedness for caregiving scores were low (mean=1.72, maximum=4.0) and positively correlated with caregiver competence (P<.001) and self-rated caregiver effectiveness (P=.004). Preparedness negatively correlated with health care use (P=.03). Caregivers of older adults on home enteral nutrition need training for multiple nutrition-related and caregiving tasks. Multidisciplinary interventions, involving dietitian expertise, are needed to better prepare caregivers to improve both caregiver effectiveness and enteral nutrition outcomes.

Web-based health interventions for family caregivers of elderly individuals: A Scoping Review.

PubMed

Wasilewski, Marina B; Stinson, Jennifer N; Cameron, Jill I

2017-07-01

For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers' health outcomes. We followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of caregiver burden were consistently observed. Caregivers value interactive interventions that are tailored to their unique needs and the illness context. However, usage of the interventions was sporadic and declined over time, indicating that future interventions should address stage-specific needs across the caregiving trajectory. A systematic review has the potential to be conducted given the consistency in caregiver burden and depression as outcomes. Copyright © 2017 Elsevier B.V. All rights reserved.

Telecommunications technology as an aid to family caregivers of persons with dementia.

PubMed

Czaja, Sara J; Rubert, Mark P

2002-01-01

The aging of the population implies that an increased number of people are going to need some form of care or assistance. Caregiving poses a range of physical, emotional, and financial demands and often causes burden and stress for family members. This article describes how technology can be used to provide support to caregivers and increase the quality of life for both caregivers and care recipients. Preliminary data from an ongoing study of dementia caregivers is provided to demonstrate the feasibility of using technological interventions for this population. The intervention involves a telecommunications system designed to augment a family therapy intervention by enhancing access to formal and informal support services. Specifically the system is intended to facilitate linkages between caregivers and other family members, friends, and other caregivers as well as to facilitate access to information on available resources. A total of 76 caregivers of dementia patients, including Cuban American and white American caregivers, received the telecommunications intervention. Data include real-time usage data and measures of usability at 6 months, 12 months, and 18 months after the initiation of the intervention. The data reported in this article are based on responses to the usability questionnaire at 6 months from a sample of 44 caregivers. Overall the results indicate that the system is easy to use and the caregivers find it valuable. The most common reason that the caregivers use the system is to communicate with other caregivers, especially those who are not nearby. The caregivers, especially the Cuban Americans, reported that the system facilitated their ability to communicate with family members and their therapist. The caregivers also indicated that they found participation in the "online discussion" groups to be very valuable and also found the "online resource guide"useful. The results demonstrate how current information and communication technologies can be used to help caregivers meet the challenges of caregiving and improve the quality of life for caregivers. The potential benefit of this type of technology for health care providers is also discussed.

Veterans Caregiving for Others: Caregiving as a Factor in the Health of America's Military Veterans.

PubMed

Manley, Natalie A; Hicken, Bret L; Rupper, Randall W

2018-06-13

Caregiving has become an important world-wide concern due to the increasing number of people living to old age who need day to day functional support. Many caregivers report moderate to high levels of caregiver burden, which has been associated with increased morbidity and mortality for both the caregiver and care recipient. There are numerous research publications on people who are caregivers for military veterans. However, there is little information on military veterans who are themselves caregivers. This study proposed to determine if there are differences in health and health behaviors between veterans who are caregiving for others (VCOs) and veterans who are not caregiving for others (VNCOs). Data were analyzed from a population-based observational cross-section involving persons who identified as veterans in the 2009 Center for Disease Control and Prevention's (CDC) Behavioral Risk Factor Surveillance System (BRFSS) national telephone survey. Those identifying as veterans were then grouped by those who also identified as caregivers and those who did not identify as caregivers. Data were weighted using the CDC's weighting equation. Group differences were analyzed using Chi-square and t-tests. We used multinomial logistic regression with a 95% confidence interval (1 = VCO; 0 = VNCO) to determine if caregiving status among veterans was independently correlated with clinically relevant and explanatory variables. Of 432,607 BRFSS participants, 12,629 were VCOs (23.4% of veterans; 10.7% of caregivers) and 44,356 were VNCOs (76.6% of veterans). Veterans who were caregivers reported similar proportions of hypertension, diabetes, coronary heart disease, history of stroke, and cancer compared with VNCOs, even though VCOs were younger than the VNCOs (57 vs. 59 yr, p < 0.01). Additionally, VCOs more often report current smoking (35% vs. 28%, p < 0.01), frequent insufficient sleep (29% vs. 21%, p < 0.01), and frequent mental distress (12% vs. 8%, p < 0.01). Veterans who are caregiving for others (VCOs) despite being younger, have similar amounts of chronic health problems and more modifiable health factors (i.e., smoking) than veterans who are not caregiving for others (VNCOs). These characteristics have important implications for health management of veterans who are caregivers.

High levels of caregiver burden in Prader-Willi syndrome.

PubMed

Kayadjanian, Nathalie; Schwartz, Lauren; Farrar, Evan; Comtois, Katherine Anne; Strong, Theresa V

2018-01-01

Prader-Willi syndrome (PWS) is a rare genetic neurodevelopmental disorder that is characterized by hyperphagia, developmental delay, incomplete sexual development, mild-to-moderate intellectual disability, and a variety of challenging behavioral and psychiatric symptoms. The characteristics of PWS can be difficult for caregivers to cope with and are likely to cause significant and long- term caregiver burden. The current study examined burden in 142 caregivers of children and adults with PWS living in the US using the Zarit Burden Interview (ZBI). The study aimed to measure the level of burden in caregivers of individuals with PWS, to explore the impact of PWS on caregiver quality of life, and to assess ZBI as an indicator of that impact. Caregivers participating in this study were predominantly mothers, 30-59 years old, non-Hispanic Whites, married or in a relationship, with an annual household income slightly distributed towards higher income. Nearly 90% of the caregiver`s children with PWS lived at home. Caregivers experienced high caregiver burden with an average ZBI score of 44.4 ± 15.4. ZBI scores were highest for caregivers of teenage and young adult individuals with PWS (49.2 ± 14.6 and 49.2 ± 14.1, respectively), while those caring for older adults (>30) and the youngest age group had lower scores (38.6 ±10.5 and 34.8 ±12.5, respectively). Caregivers reported that caring for a person with PWS negatively impacted their romantic relationship, ability to work, sleep, and mood. Whereas we did not find strong correlations between family income or level of help the caregiver receives and ZBI scores, the results showed significant correlations and a linear relationship between ZBI scores and caregiver depressed mood, feelings of anxiety, negative romantic relationship impact, as well as sleep and work disruption. Our study reveals that PWS incurs high caregiver burden and impacts many aspects of the lives of caregiver. We identified the ZBI as a good predictor of that impact. Our findings draw attention to the critical unmet need for support for caregivers of individuals with PWS.

Needs of older caregivers of patients with advanced cancer.

PubMed

Daly, Barbara J; Douglas, Sara; Lipson, Amy; Foley, Helen

2009-11-01

To determine whether age or stage of cancer can be used to identify caregivers at high risk for excessive burden or distress. Descriptive data collected as part of a psychosocial research registry, comparing younger caregivers with older and caregivers of early-stage patients with those of later stage. Caregivers of newly diagnosed adult cancer patients. Caregiver Reaction Assessment (CRA), the Profile of Mood States (POMS), single-item indicators from the Patient Reported Outcome Measurement Information System set, and the Medical Outcomes Study Social Support (MOS-SS) Scale. Patient information was obtained from the medical record. Younger caregivers and caregivers of patients with Stage I and II cancer identified a greater lack of family support than older caregivers and caregivers of patients with Stage III and IV cancer. Significant regression models were found for three CRA subscales (Disrupted Schedule, Lack of Family Support, and Health Problems), as well as for the POMS depression and fatigue scales. Caregiver social support (MOS-SS) made the only significant contribution to the models. There were significant differences between caregivers with high and low levels of social support on almost all measures of well-being. Incorporating formal assessment of social support may be useful in identifying at-risk caregivers. In addition, there is a need to further investigate which dimensions of social support are most strongly related to measures of well-being.

Inpatient dependency in activities of daily living predicts informal caregiver strain: A cross-sectional study.

PubMed

Pérez Mármol, José Manuel; Flores Antigüedad, María Luz; Castro Sánchez, Adelaida María; Tapia Haro, Rosa María; García Ríos, María Del Carmen; Aguilar Ferrándiz, María Encarnación

2018-01-01

To investigate what factors influence caregiver strain in informal caregivers just before inpatients are discharged. Previous research has investigated the risk factors related to the burden on caregivers in different clinical contexts. However, the findings from studies analysing these factors just before inpatients are discharged are uncertain. A cross-sectional study design. The study involved 100 inpatients and 100 informal caregivers from seven different hospital units. Sociodemographic, clinical, functional and cognitive factors of inpatients-caregivers, and caregiver strains were recorded. Descriptive, bivariate correlation and multiple regression analyses were performed. Caregivers of inpatients at risk of ulcers had significantly higher scores of strain. Dependency in activities of daily living scores and cognitive status scores were statistically inversely proportional to caregiver strain. Almost 27% of total variance of caregiver strain was due to dependency in activities of daily living. Caregiver strain was mainly associated with those situations in which the hospitalised patients presented the risk of ulcers, dependency and cognitive disorders, with dependency in activities of daily living being the factor that most influenced informal caregiver strain. Dependency in activities of daily living, among other risk factors, should be evaluated at an early stage, monitored and controlled by hospital nursing staff. These strategies could protect and promote the well-being and quality of life of informal caregivers during patient hospitalisation and after discharge. © 2017 John Wiley & Sons Ltd.

Male caregivers of patients with breast and gynecologic cancer: experiences from caring for their spouses and partners.

PubMed

Lopez, Violeta; Copp, Gina; Molassiotis, Alexander

2012-01-01

There is considerable evidence demonstrating the negative effects of caregiving particularly in the areas of psychological well-being and quality of life of family caregivers of patients with cancer. However, there is little work on male caregivers' subjective experience of caring for family members with cancer, and little is known on how caregivers experience the caring over time. The objective of the study was to explore male spouses'/partners' experience of caring for their wives/partners with breast and gynecologic cancer over a 1-year period. An exploratory longitudinal qualitative descriptive design using face-to-face interviews of 15 spouses/partners was used in this study. Content analysis of the transcribed data was conducted to extract significant categories and themes. Varying degrees of interrelated cognitive, physical, and psychological impact were experienced by caregivers that extended to 12 months. Gender-specific attitudes prevented male caregivers from supporting their own self. Male caregivers dealt with problems that arose in the caregiving congruent with their masculinity, such as minimizing disruptions, focusing on tasks, and keeping their own stress to themselves. Male caregivers as a separate group with their own needs have not received much attention in the cancer literature, and their concerns and challenges may differ from those of female caregivers. Male caregivers' concerns and challenges must be taken into consideration when planning appropriate interventions to support them in their caregiving role.

Post-traumatic stress disorder symptoms in family caregivers of adult patients with acute leukemia from a dyadic perspective.

PubMed

Jia, Mutian; Li, Jie; Chen, Chunyan; Cao, Fenglin

2015-12-01

Acute leukemia is a fatal disease in adults that not only affects the patients who suffer from it but also their family caregivers. No studies have investigated post-traumatic stress disorder symptoms (PTSS) in family caregivers of adult patients with acute leukemia using a matched sample. The current study examined PTSS in adult patients with acute leukemia and their family caregivers and investigated the factors associated with caregivers' PTSS. A total of 163 patient-caregiver dyads completed questionnaires assessing their PTSS, psychological resilience, and perceived social support. Hierarchical linear regression was used to explore the related factors of caregivers' PTSS. More caregivers than patients met caseness criteria for PTSS (36.8% vs. 18.4%, p < 0.001). Among caregivers, being more closely related to the patients (e.g., spouses and parents), having patients with higher PTSS and having lower psychological resilience were independently associated with more severe PTSS. Caregivers of acute leukemia patients had significantly more severe PTSS than did their patients. This study is the first to investigate PTSS among family caregivers of adult patients with acute leukemia and its related factors in a matched sample. More attention should be paid to the caregivers of patients with acute leukemia to minimize their PTSS and thus improve mental health of caregivers and reduce potential negative consequences for the patients themselves. Copyright © 2015 John Wiley & Sons, Ltd.

Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis.

PubMed

Joling, Karlijn J; Windle, Gill; Dröes, Rose-Marie; Meiland, Franka; van Hout, Hein P J; MacNeil Vroomen, Janet; van de Ven, Peter M; Moniz-Cook, Esmé; Woods, Bob

2016-01-01

Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services. © 2016 The Author(s) Published by S. Karger AG, Basel.

Age Effects on Cognitive and Physiological Parameters in Familial Caregivers of Alzheimer's Disease Patients

PubMed Central

Corrêa, Márcio Silveira; Giacobbo, Bruno Lima; Vedovelli, Kelem; de Lima, Daiane Borba; Ferrari, Pamela; Argimon, Irani Iracema de Lima; Walz, Julio Cesar

2016-01-01

Objectives Older familial caregivers of Alzheimer’s disease patients are subjected to stress-related cognitive and psychophysiological dysfunctions that may affect their quality of life and ability to provide care. Younger caregivers have never been properly evaluated. We hypothesized that they would show qualitatively similar cognitive and psychophysiological alterations to those of older caregivers. Method The cognitive measures of 17 young (31–58 years) and 18 old (63–84 years) caregivers and of 17 young (37–57 years) and 18 old (62–84 years) non-caregiver controls were evaluated together with their salivary cortisol and dehydroepiandrosterone (DHEA) levels, as measured by radioimmunoassays and ELISA assays of brain-derived neurotrophic factor (BDNF) in serum. Results Although younger caregivers had milder impairments in memory and executive functions than older caregivers, their performances fell to the same or lower levels as those of the healthy older controls. Decreases in DHEA and BDNF levels were correlated with the cognitive dysfunctions observed in the older and younger caregivers, respectively. Cortisol at 10PM increased in both caregiver groups. Discussion Younger caregivers were prone to cognitive impairments similar to older caregivers, although the degree and the neuropsychological correlates of the cognitive dysfunctions were somewhat different between the two groups. This work has implications for caregiver and care-recipient health and for research on the neurobiology of stress-related cognitive dysfunctions. PMID:27706235

Caring for frail elders with musculoskeletal conditions and family caregivers' subjective well-being: The role of multidimensional caregiver burden.

PubMed

Lu, Nan; Liu, Jinyu; Lou, Vivian W Q

2015-01-01

The present study examined the unique set of correlates of each dimension of the burden experienced by family caregivers of frail elders with musculoskeletal (MSK) conditions in China, and the role of caregiver burden in between caregiver stressors and subjective well-being. The data was derived from a community sample of 494 elder-caregiver dyads from six urban districts of Shanghai (China). The elders were aged 75 or above, needed assistance in activities of daily living (ADL) and had MSK conditions. The family caregivers were these elders' primary caregivers and at the age of 18 or older. Path analysis was used to examine the proposed model. Care recipients' functional health, cognitive status and behavioral problems affected the multiple dimensions of caregiver burden differently. These three stressors also indirectly affected caregivers' subjective well-being through physical, social and developmental burden. The findings highlighted the mediator role of caregiver burden in between caregiver stressors and subjective well-being, which supported burden-as-mediator theory in understanding family caregiving for frail elders with musculoskeletal conditions in a Chinese context. The focus of intervention should be varied according to the levels of the primary stressors. Policy and intervention implications with regard to the ways of helping Chinese families care for their frail elders with MSK conditions were discussed. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

The financial impact of head and neck cancer caregiving: a qualitative study.

PubMed

Balfe, Myles; Butow, Phyllis; O'Sullivan, Eleanor; Gooberman-Hill, Rachael; Timmons, Aileen; Sharp, Linda

2016-12-01

There is a lack of research on the financial impacts that head and neck cancer has on caregivers. To explore the overall financial impact of head and neck cancer on caregivers; to describe the factors that mitigate this impact. Interviews with 31 caregivers (mean time caring: 5.7 years). Head and neck cancer had a considerable financial impact on caregivers. It resulted in out of pocket costs and caregivers and/or their relative/friend with cancer often became under- or un-employed. Caregivers with large debts or ongoing expenses appeared to be particularly vulnerable to cancer-related financial pressures. Finance related psychological stress was prevalent, although some caregivers hid their psychological difficulties from other people. Factors which help caregivers to mitigate financial distress included having private health insurance and being able to access to medical and/or social welfare benefits. Head and neck cancer can cause caregivers substantial financial and psychological distress. Distress may be mitigated by providing caregivers and their households with access to welfare benefits. Health professionals should be aware that head and neck cancer can have short and long-term financial consequences for caregivers and their families. Health professionals should refer patients and their caregivers to medical social workers who can help them with their financial issues. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Development and Implementation of Tele-Savvy for Dementia Caregivers: A Department of Veterans Affairs Clinical Demonstration Project.

PubMed

Griffiths, Patricia C; Whitney, M Kate; Kovaleva, Mariya; Hepburn, Kenneth

2016-02-01

To test fidelity and preliminary efficacy of Tele-Savvy, an internet-based version of the in-person, evidence-based psychoeducation Savvy Caregiver Program (SCP) for dementia caregivers. Tele-Savvy used synchronous (tele-conferences) and asynchronous components (video modules) to provide program access to caregivers in their homes. SCP experts were surveyed to evaluate Tele-Savvy's fidelity to SCP. A convenience sample of 30 dementia caregivers from the Atlanta VA Medical Center enrolled in the Tele-Savvy clinical demonstration program. Twenty-two caregivers completed both pre- and postprogram evaluations, which included measures of caregiver stress and competence and behavioral and psychological symptoms of dementia (BPSD). Expert review confirmed Tele-Savvy's fidelity with and, in certain domains, improvement on the original. Participants demonstrated moderately high initial levels of burden, anxiety, and depressive symptoms all of which decreased significantly postprogram in an intention to treat analysis. Similar reductions were seen in care recipients' BPSD and caregivers' reactions to them. Marginally significant increases in caregiver competence were observed. Caregiver and expert panel evaluations of program quality were enthusiastic. An effective online caregiver psychoeducation program could provide greatly expanded access for caregivers who cannot attend in person for reasons of distance, transportation limitations, and caregiving responsibilities. Further testing in a controlled trial is needed to establish program efficacy. Published by Oxford University Press on behalf of the Gerontological Society of America 2015.

Characteristics of the spouse caregiving experience: Comparison between early- and late-onset dementia.

PubMed

Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

2017-06-20

To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programs. Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. We compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. The results suggest that programs should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

Death representation of caregivers in hospice.

PubMed

Andruccioli, Jessica; Russo, Maria Maffia; Bruschi, Angela; Pedrabissi, Luigi; Sarti, Donatella; Monterubbianesi, Maria Cristina; Rossi, Sabina; Rocconi, Sabina; Raffaeli, William

2012-11-01

In this study, we investigated caregiver's death representation in hospice. The results presented here are a further analysis of the data collected in our previous study, concerning the evaluation of the caregiver in hospice. The data analysis of 24 caregivers of patients hospitalized in Rimini Hospice (Italy) underlined that caregivers avoiding death representation of the patient admitted to hospice had fewer protective factors (52.3%) and more risk factors (47.7%) than caregivers nonavoiding (66.5% and 33.5%, respectively). Caregivers avoiding death representation, moreover, experienced a greater distress (58%) than those nonavoiding (42%).

Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder.

PubMed

Lerner, Debra; Chang, Hong; Rogers, William H; Benson, Carmela; Lyson, Mercedes C; Dixon, Lisa B

2018-02-01

The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates. From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs). Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only. Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.

Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability.

PubMed

Polenick, Courtney A; DePasquale, Nicole

2018-01-08

Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Mental and Physical Health Correlates among Family Caregivers of Patients with Newly-Diagnosed Incurable Cancer: A Hierarchical Linear Regression Analysis

PubMed Central

Shaffer, Kelly M.; Jacobs, Jamie M.; Nipp, Ryan D.; Carr, Alaina; Jackson, Vicki A.; Park, Elyse R.; Pirl, William F.; El-Jawahri, Areej; Gallagher, Emily R.; Greer, Joseph A.; Temel, Jennifer S.

2016-01-01

Purpose Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. Methods At baseline for a trial of early palliative care, caregivers of participating patients (N=275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Results Caregivers’ mental health was worse than the U.S. national population (M=44.31, p<.001), yet their physical health was better (M=56.20, p<.001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B=0.31, p=.001), spousal caregivers (B=−8.70, p=.003), who cared for patients reporting low emotional well-being (B=0.51, p=.01) reported worse mental health; older (B=−0.17, p=.01) caregivers with low educational attainment (B=4.36, p<.001) who cared for patients reporting low social well-being (B=0.35, p=.05) reported worse physical health. Conclusions In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care. PMID:27866337

The effect of a social support boosting intervention on stress, coping, and social support in caregivers of children with HIV/AIDS.

PubMed

Hansell, P S; Hughes, C B; Caliandro, G; Russo, P; Budin, W C; Hartman, B; Hernandez, O C

1998-01-01

Caring for the human immunodeficiency virus (HIV)-infected child is challenging and affects the entire family system. Studies have shown that social support can mitigate caregiver stress and enhance coping; however, social support may not always result in a positive outcome for the recipient. To measure caregiver stress, coping, and social support, and to test the effect of a social support boosting intervention on levels of stress, coping, and social support among caregivers of children with HIV/acquired immune deficiency syndrome (AIDS). An experimental design was used with monthly social support boosting interventions implemented. The stratified randomized sample included 70 primary caregivers of children with HIV/AIDS. The sample strata were seropositive caregivers (biological parents) and seronegative caregivers (foster parents and extended family members). Study measures included the Derogatis Stress Profile, Family Crisis Oriented Personal Evaluation Scale, and the Tilden Interpersonal Relationship Inventory. Data were analyzed using descriptive statistics and repeated measure MANOVA. Statistically significant differences between the experimental and control groups were found on changes in the dependent variables over time when caregiver strata were included as a factor in the analysis; no statistically significant results were found when caregiver strata were combined. Univariate Ftests indicated that the level of social support for caregivers who were seronegative in the experimental group was significantly different from seronegative caregivers in the control group and seropositive caregivers in both groups. No significant treatment group differences were found for seropositive caregivers. Seronegative caregivers derived substantial benefit from the social support boosting intervention. Seronegative caregivers who acquire a child with HIV/AIDS are confronted with a complex stressful situation; the critical need to enhance their social support is achievable through the intervention tested in this study.

Preloss grief in family caregivers during end-of-life cancer care: A nationwide population-based cohort study.

PubMed

Nielsen, Mette Kjaergaard; Neergaard, Mette Asbjoern; Jensen, Anders Bonde; Vedsted, Peter; Bro, Flemming; Guldin, Mai-Britt

2017-12-01

Severe grief symptoms in family caregivers during end-of-life cancer trajectories are associated with complicated grief and depression after the loss. Nevertheless, severe grief symptoms during end-of-life caregiving in caregivers to cancer patients have been scarcely studied. We aimed to explore associations between severe preloss grief symptoms in caregivers and modifiable factors such as depressive symptoms, caregiver burden, preparedness for death, and end-of-life communication. We conducted a population-based prospective study of caregivers to 9512 patients registered with drug reimbursement due to terminal illness, and 3635 caregivers responded. Of these, 2865 caregivers to cancer patients completed a preloss grief scale (Prolonged Grief 13, preloss version). Associations with factors measured during end-of-life caregiving were analyzed using logistic regression. Severe preloss grief symptoms were reported by 432 caregivers (15.2%). These symptoms were associated with depressive symptoms (adjusted odds ratio [OR] = 12.4; 95% CI, 9.5-16.3), high caregiver burden (adjusted OR = 8.3; 95% CI, 6.3-11.1), low preparedness for death (adjusted OR = 3.3; 95% CI, 2.5-4.4), low level of communication about dying (adjusted OR = 3.2; 95% CI, 2.2-4.4), and "too much" prognostic information (adjusted OR = 2.8; 95%, 1.7-4.6). Severe preloss grief symptoms were significantly associated with distress, low preparedness, and little communication during caregiving. Thus, severe preloss grief symptoms may be a key indicator for complications in caregivers of cancer patients in an end-of-life trajectory. Targeted interventions are needed to support family caregivers with severe preloss grief symptoms. Development of preloss grief assessment tools and interventions should be a priority target in future research. Copyright © 2017 John Wiley & Sons, Ltd.

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia.

PubMed

Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David

2017-09-01

To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement. Published by Elsevier Inc.

Self-reported burden among caregivers of patients with multiple sclerosis.

PubMed

Gupta, Shaloo; Goren, Amir; Phillips, Amy L; Stewart, Michelle

2012-01-01

Multiple sclerosis (MS) and Alzheimer's disease (AD) are chronic and progressive diseases that may impose a significant burden on caregivers and patients' immediate families. Extensive research shows MS and AD caregiver burden on physical and mental health, but no direct comparisons between MS and AD caregivers have been reported in the literature. The objective of this study was to examine the extent of MS caregiver burden compared with that of noncaregivers and AD caregivers. Data were obtained from the 2009 National Health and Wellness Survey administered online to a US representative adult sample (N = 75,000). Respondents reported health status, quality of life, work productivity, health-care utilization, and caregiver status. Multivariable regressions, adjusting for key characteristics (eg, age, gender, marital status, depression), were conducted to explore differences between MS caregivers (n = 215) and noncaregivers (n = 69,224) and between MS caregivers and AD caregivers (n = 1341). The results indicated that MS caregivers had significantly greater activity impairment (P = .01), poorer mental (P = .015) and physical (P = .002) health status, lower health utility scores (P = .002), and more traditional health-care provider visits (P < .001), emergency room (ER) visits (P < .001), and hospitalizations (P = .001) than noncaregivers, adjusting for covariates. After adjustments, MS caregivers had greater activity impairment (P = .044), more ER visits (P = .017), and more hospitalizations (P = .008) than AD caregivers. Significant work productivity differences were not observed across groups, possibly owing to fewer employed respondents. Thus, in this study, MS caregivers had significantly more burden than noncaregivers, and for some measures, even AD caregivers. The results reveal the hidden toll on those providing care for MS patients and highlight the need for health-care providers to recognize their burden so that appropriate measures can be implemented.

Family Caregiver Social Problem-Solving Abilities and Adjustment to Caring for a Relative with Vision Loss

PubMed Central

Bambara, Jennifer K.; Owsley, Cynthia; Wadley, Virginia; Martin, Roy; Porter, Chebon; Dreer, Laura E.

2009-01-01

Purpose To examine the prevalence of persons at risk for depression among family caregivers of visually impaired persons and the extent to which social problem-solving abilities are associated with caregiver depressive symptomatology and life satisfaction. Methods Family caregivers were defined as adults who accompanied their adult relative to an appointment at a low-vision rehabilitation clinic and self-identified themselves as the primary family caregiver responsible for providing some form of assistance for their relative due to vision impairment. Demographic variables, depressive symptoms, life satisfaction, caregiver burden, and social problem-solving abilities were assessed in caregivers. The patient’s visual acuity and depressive symptoms and their relationship to the caregiver’s depressive symptoms and life satisfaction were also examined. Results Ninety-six family caregivers were enrolled. Of those, 35.4% were identified as at risk for depression. Among caregivers, dysfunctional or ineffective social problem-solving abilities were significantly associated with greater depressive symptomatology and decreased life satisfaction after adjustment for caregiver burden and demographic and medical variables for both the caregiver and the visually impaired patient. Problem orientation or motivation to solving problems was also significantly associated with caregiver depression and satisfaction with life. Conclusions A substantial number of caregivers of visually impaired adults experience psychosocial distress, particularly among those who possess poor social problem-solving abilities. These results underscore the need for routine screening and treatment of emotional distress among individuals caring for relatives with vision impairments. Future research should examine the extent to which psychosocial interventions targeting caregiver social problem-solving skills may be useful not only in improving caregiver quality of life but also in subsequently enhancing rehabilitation outcomes for the visually impaired care recipient. PMID:19060279

Mental health and physical health of family caregivers for persons with dementia: a comparison of African American and white caregivers.

PubMed

Knight, B G; Longmire, C V Flynn; Dave, J; Kim, J H; David, S

2007-09-01

This investigation analyzed the differences between African American and white caregivers in the effects of family caregiving for a person with dementia on mental health and physical health variables (including subjective health, reported diseases and cardiovascular measures). A population-based sample of 102 caregivers is compared with 102 non-caregivers matched on ethnicity, gender and age. There were no significant group differences for mental health effects. Most significant physical health effects were attributable to main effects of ethnicity rather than caregiving status. However, African American caregivers had higher diastolic blood pressure than all other groups, a finding consistent with group-specific risk for circulatory system disorders.

Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

PubMed Central

Toyama, Hiroko; Honda, Akiko

2016-01-01

Family caregivers of patients with terminal-stage cancer have numerous roles as caregivers, which can influence their anticipatory grief. The purpose of this study was to clarify how talking to family caregivers of patients with terminal illness using the narrative approach can influence such caregivers’ process of anticipatory grief. We conducted the narrative approach as an intervention with two family caregivers several times and qualitatively analyzed their narratives. The results indicated that these family caregivers had two primary roles—family member and caregiver—and that family caregivers felt trapped in their caregiver role. The narrative approach helped them transition into the role needed for coping with the loss. PMID:28462354

Caregiver Expectations of Family-based Pediatric Obesity Treatment.

PubMed

Giannini, Courtney; Irby, Megan B; Skelton, Joseph A

2015-07-01

To explore caregivers' expectations of pediatric weight management prior to starting treatment. Interviews conducted with 25 purposefully selected caregivers of children, ages 8-12 years, waiting to begin 4 different weight management programs. Interviews were conducted and recorded via telephone and coded using a multistage inductive approach. Caregivers listed specific motivators for seeking treatment that did not often align with clinical measures of success: caregivers perceived child's socio-emotional health improvement to be an important success measure. Caregivers understood the program's approach, but were unsure of the commitment required. Caregivers were confident they would complete treatment but not in being successful. Caregivers' expectations of treatment success and their role in treatment may be a hindrance to adherence.

The role of attitudes and culture in family caregiving for older adults.

PubMed

Anngela-Cole, Linda; Hilton, Jeanne M

2009-01-01

This study evaluated cultural differences in attitudes toward caregiving and the stress levels of family caregivers. Participants included 98 Japanese American and 86 Caucasian American family caregivers caring for frail elders. Analyses using MANOVA and multiple regression analyses revealed that the Caucasian caregivers had more positive attitudes and provided more hours of care than the Japanese caregivers but that both groups had elevated levels of caregiver stress. The stress that family caregivers currently experience could lead to a future generation of care recipients who enter old age in worse condition than their predecessors. Professionals need to work together to develop culturally appropriate, evidence-based interventions to address this issue.

Labor market work and home care's unpaid caregivers: a systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work.

PubMed

Lilly, Meredith B; Laporte, Audrey; Coyte, Peter C

2007-12-01

As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for "intensive" caregivers and developing workplace policies for employed caregivers.

A secondary data analysis of Internet use in caregivers of persons with dementia.

PubMed

Kim, Heejung; Rose, Karen M; Netemeyer, Richard G; Merwin, Elizabeth I; Williams, Ishan C

2014-12-01

This paper is a secondary data analysis to investigate relationships among caregiver stress appraisal, self-rated health and health-related Internet use. Cross-sectional correlation design. National Alliance for Caregiving telephone survey conducted in the USA was a primary data source collected in 2009 from 258 caregivers of persons with dementia, who used the Internet to perform care-giving tasks. Based on Pearlin's Stress Process Model, structural equation modelling was conducted. Caregivers with poor health reported higher levels of caregiver stress appraised, which was associated with more Internet use for health-related purposes. It is required to develop effective Internet-based resources to meet the needs of highly stressed caregivers of persons with dementia. However, there was no relationship between self-rated health and health-related Internet use in dementia caregiver.

Depression among older Mexican American caregivers.

PubMed

Hernandez, Ann Marie; Bigatti, Silvia M

2010-01-01

The authors compared depression levels between older Mexican American caregivers and noncaregivers while controlling for confounds identified but not controlled in past research. Mexican American caregivers and noncaregivers (N = 114) ages 65 and older were matched on age, gender, socioeconomic status, self-reported health, and acculturation. Caregivers reported higher scores on the Center for Epidemiologic Studies Depression scale (CES-D) and were more likely to score in the depressed range than noncaregivers. In a regression model with all participants, group classification (caregiver vs. noncaregiver) and health significantly predicted CES-D scores. A model with only caregivers that included caregiver burden, self-rated health, and gender significantly predicted CES-D scores, with only caregiver burden entering the regression equation. These results suggest that older Mexican American caregivers are more depressed than noncaregivers, as has been found in younger populations. (c) 2009 APA, all rights reserved.

Determination of Care Burden of Caregivers of Patients with Multiple Sclerosis in Turkey.

PubMed

Özmen, Serpil; Yurttaş, Afife

2018-01-01

The aim of this study was to determine the care burden of caregivers of patients with multiple sclerosis in Turkey. This descriptive study was conducted with 92 caregivers. To collect data, information form and Zarit Caregiver Burden Interview (ZCBI) were used. Most of the caregivers (65.2%) were females and 71.7% of them were married. The average age of caregivers was 38 and above. The mean ZCBI score of caregivers was 25.44 ± 9.50. The ZCBI score was significantly higher in caregivers providing care for more than six years (28.09 ± 10.16). Additionally, the ZCBI score was significantly higher in caregivers providing care 3-4 hours per day (32.23 ± 8.37) and providing physical care (29.28 ± 5.18).

Determination of Care Burden of Caregivers of Patients with Multiple Sclerosis in Turkey

PubMed Central

Özmen, Serpil

2018-01-01

The aim of this study was to determine the care burden of caregivers of patients with multiple sclerosis in Turkey. This descriptive study was conducted with 92 caregivers. To collect data, information form and Zarit Caregiver Burden Interview (ZCBI) were used. Most of the caregivers (65.2%) were females and 71.7% of them were married. The average age of caregivers was 38 and above. The mean ZCBI score of caregivers was 25.44 ± 9.50. The ZCBI score was significantly higher in caregivers providing care for more than six years (28.09 ± 10.16). Additionally, the ZCBI score was significantly higher in caregivers providing care 3-4 hours per day (32.23 ± 8.37) and providing physical care (29.28 ± 5.18). PMID:29755612

Effects of home-based long-term care services on caregiver health according to age.

PubMed

Chen, Ming-Chun; Kao, Chi-Wen; Chiu, Yu-Lung; Lin, Tzu-Ying; Tsai, Yu-Ting; Jian, Yi-Ting Zhang; Tzeng, Ya-Mei; Lin, Fu-Gong; Hwang, Shu-Ling; Li, Shan-Ru; Kao, Senyeong

2017-10-23

Caregiver health is a crucial public health concern due to the increasing number of elderly people with disabilities. Elderly caregivers are more likely to have poorer health and be a care recipient than younger caregivers. The Taiwan government offers home-based long-term care (LTC) services to provide formal care and decrease the burden of caregivers. This study examined the effects of home-based LTC services on caregiver health according to caregiver age. This cross-sectional study included a simple random sample of care recipients and their caregivers. The care recipients had used LTC services under the Ten-Year Long-Term Care Project (TLTCP) in Taiwan. Data were collected through self-administered questionnaires from September 2012 to January 2013. The following variables were assessed for caregivers: health, sex, marital status, education level, relationship with care recipient, quality of relationship with care recipient, job, household monthly income, family income spent on caring for the care recipient (%) and caregiving period. Furthermore, the following factors were assessed for care recipients: age, sex, marital status, education level, living alone, number of family members living with the care recipient, quality of relationship with family and dependency level. The health of the caregivers and care recipients was measured using a self-rated question (self-rated health [SRH] was rated as very poor, poor, fair, good and very good). The study revealed that home nursing care was significantly associated with the health of caregivers aged 65 years or older; however, caregivers aged less than 65 who had used home nursing care, rehabilitation or respite care had poorer health than those who had not used these services. In addition, the following variables significantly improved the health of caregivers aged 65 years or older: caregiver employment, 20% or less of family income spent on caregiving than 81%-100% and higher care recipient health. The involvement of daughters-in-law, rather than spouses, and care recipient health were positively related to the health of caregivers aged less than 65 years. The findings suggest that home-based LTC service use benefits the health of elderly caregivers. By contrast, home-based LTC service use may be negatively correlated with the health of the caregivers aged less than 65 years.

Family Caregivers in Cancer: Roles and Challenges (PDQ®)—Health Professional Version

Cancer.gov

Family caregivers, also called informal caregivers, play an important role in treatment planning, decision making, and managing cancer care. Get comprehensive information on the importance of caregiver roles and concerns and helpful interventions for caregivers in this summary for clinicians.

The effects on caregivers of cancer patients' needs and family hardiness.

PubMed

Jeong, Ansuk; Shin, Dong Wook; Kim, So Young; Yang, Hyung Kook; Shin, Joo Yeon; Park, Keeho; An, Ji Yeong; Park, Jong-Hyock

2016-01-01

Family caregivers of cancer patients are anticipated to serve multiple roles but the factors that influence their reaction to caregiving have not gotten much attention. The current study aimed to investigate the effects of cancer patient's needs level and the family hardiness on the caregivers' reaction. A national survey was conducted through regional branches of the National Cancer Center of South Korea, yielding 990 patient-caregiver dyads. Patients and caregivers provided self-report questionnaires. Patient's medical records complemented the self-report survey data. On all five domains of caregiver reaction, which were schedule, esteem, support, health, and finance, family hardiness was a significant predictor. Male, older, low-income caregivers reported more burden in caregiving with some. The interaction effect of patient's needs and family hardiness was found only on esteem. The implications based on the findings are discussed in terms of the psycho-oncological and psycho-social interventions for the cancer patients and their family caregivers. Copyright © 2015 John Wiley & Sons, Ltd.

[Caregiving consequences in mental disorders--definitions and instruments of assessment].

PubMed

Ciałkowska-Kuźmińska, Magdalena; Kiejna, Andrzej

2010-01-01

Severe mental illnesses have far-reaching consequences for both patients and their relatives. This paper reviews literature on the measures of caregiving consequences. Authors provide a condensed knowledge and research results in the area of caregiving consequences, especially both subjective and objective caregivers' burden. The consequences of care apply to carers' social and leisure activities, financial status, health condition. The burden of care has three fundamental causes: the reorganisation of mental health services, a social isolation of patients and their families and the lack of systemic support for caregivers. The problem of caregiving consequences has been investigated in several studies. In order to identify factors, which have impact on caregiver distress, a variety instruments have been developed. This paper focuses on questionnaires useful for the systematic assessment of both objective and subjective burden: Involvement Evaluation Questionnaire (IEQ), Perceived Family Burden Scale (PFBS), Zarit Caregiver Burden Scale (ZCBS), Experience of Caregiving Inventory (ECI), Family Problems Questionnaire (FPQ). The mentioned instruments proved to be a reliable instrument for measuring caregiver consequences in mental healthcare.

Healthcare use and cost in dementia caregivers: Longitudinal results from the Predictors Caregiver Study

PubMed Central

Zhu, Carolyn W.; Scarmeas, Nikolaos; Ornstein, Katherine; Albert, Marilyn; Brandt, Jason; Blacker, Deborah; Sano, Mary; Stern, Yaakov

2014-01-01

OBJECTIVE: To examine the effects of caregiver and patient characteristics on caregivers’ medical care use and cost. METHODS: 147 caregiver/patient dyads were followed annually for 6 years in 3 academic AD centers in the US. Logistic, negative binomial, and generalized linear mixed models were used to examine overall effects of caregiver/patient characteristics on caregivers’ hospitalizations, doctor visits, outpatient tests and procedures, and prescription and over-the-counter medications. RESULTS: Patients’ comorbid conditions and dependence were associated with increased healthcare use and costs of caregivers. Increases in caregiver depressive symptoms are associated with increases in multiple domains of caregivers’ healthcare use and costs. DISCUSSION: Findings suggest that we should expand our focus on dementia patients to include family caregivers to obtain a fuller picture of effects of caregiving. Primary care providers should integrate caregivers’ needs in healthcare planning and delivery. Clinical interventions that treat patients and caregivers as a whole will likely achieve the greatest beneficial effects. PMID:24637299

Utilizing evidence-based assessment instruments to detect well-being and distress in English- and Spanish-speaking caregivers of individuals affected by dementia.

PubMed

Burke, Shanna L; Burgess, Aaron; Cadet, Tamara

2017-01-01

Objective The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings. Six were validated in Spanish, and one other is available in Spanish but not validated. Conclusion As many as 80% of care recipients are cared for in the home by family members who act as informal caregivers. Caregivers of persons with dementia may experience depression symptoms, high caregiver burden, and feelings of being constrained. Due to the lack of psychometric evidence available, the validity of some assessments is questionable.

Caregiver preference for reinforcement-based interventions for problem behavior maintained by positive reinforcement.

PubMed

Gabor, Anne M; Fritz, Jennifer N; Roath, Christopher T; Rothe, Brittany R; Gourley, Denise A

2016-06-01

Social validity of behavioral interventions typically is assessed with indirect methods or by determining preferences of the individuals who receive treatment, and direct observation of caregiver preference rarely is described. In this study, preferences of 5 caregivers were determined via a concurrent-chains procedure. Caregivers were neurotypical, and children had been diagnosed with developmental disabilities and engaged in problem behavior maintained by positive reinforcement. Caregivers were taught to implement noncontingent reinforcement (NCR), differential reinforcement of alternative behavior (DRA), and differential reinforcement of other behavior (DRO), and the caregivers selected interventions to implement during sessions with the child after they had demonstrated proficiency in implementing the interventions. Three caregivers preferred DRA, 1 caregiver preferred differential reinforcement procedures, and 1 caregiver did not exhibit a preference. Direct observation of implementation in concurrent-chains procedures may allow the identification of interventions that are implemented with sufficient integrity and preferred by caregivers. © 2016 Society for the Experimental Analysis of Behavior.

Targeting communication interventions to decrease oncology family caregiver burden

PubMed Central

Wittenberg-Lyles, Elaine; Goldsmith, Joy; Oliver, Debra Parker; Demiris, George; Rankin, Anna

2012-01-01

Objectives The goal of this paper was to articulate and describe family communication patterns that give shape to four types of family caregivers: Manager, Carrier, Partner, and Loner. Data Sources Case studies of oncology family caregivers and hospice patients were selected from data collected as part of a larger, randomized controlled trial aimed at assessing family participation in interdisciplinary team meetings. Conclusion Each caregiver type demonstrates essential communication traits with nurses and team members; an ability to recognize these caregiver types will facilitate targeted interventions to decrease family oncology caregiver burden. Implications for Nursing Practice By becoming familiar with caregiver types, oncology nurses will be better able to address family oncology caregiver burden and the conflicts arising from family communication challenges. With an understanding of family communication patterns and its impact on caregiver burden, nurses can aid patient, family, and team to best optimize all quality of life domains for patient as well as the lead family caregiver. PMID:23107184

A national profile of end-of-life caregiving in the United States

PubMed Central

Ornstein, Katherine A.; Kelley, Amy S.; Bollens-Lund, Evan; Wolff, Jennifer L.

2017-01-01

Family and friends are the predominant providers of end-of-life care (EOL). Yet knowledge of the caregiving experience at the EOL has been constrained by a narrow focus on specific diseases or the “primary” caregiver and methodological limitations due to reliance on convenience samples, or recall biases associated with mortality follow-back study design. Using prospective, linked nationally representative datasets of Medicare beneficiaries and their caregivers, we found that in 2011 900,000 older adults at the EOL received support from 2.3 million paid and unpaid caregivers. Nearly 9 in 10 of these caregivers were family members or unpaid. EOL caregivers provided more extensive care and reported more care-related challenges (e.g., physical difficulty) than non-EOL caregivers. EOL challenges were especially prevalent among caregiving spouses. To meet the needs of older adults at the EOL, families and unpaid caregivers must be better recognized and integrated in care delivery and supportive services must be expanded and made more widely available. PMID:28679804

A Prospective Study of the Onset of Sexual Behavior and Sexual Risk in Youth Perinatally Infected With HIV

PubMed Central

Bauermeister, José A.; Elkington, Katherine S.; Robbins, Reuben N.; Kang, Ezer; Mellins, Claude A.

2011-01-01

Perinatally HIV-infected (PHIV+) youth are surviving into adolescence and young adulthood. Understanding the sexual development of PHIV+ youth is vital to providing them with developmentally appropriate HIV prevention programs. Using pooled data (N = 417) from two longitudinal studies focused on HIV among youth (51% female; 39% HIV+) and their caregivers (92% female; 46% HIV+), we compared the rate of sexual onset during adolescence across four youth-caregiver combinations: PHIV+ youth with HIV+ caregivers (12%); PHIV+ youth with HIV− caregivers (27%); HIV− youth with HIV+ caregivers (34%); and HIV− youth with HIV-caregivers (27%). Youth with HIV− caregivers were more likely than other youth-caregiver groups to have had their sexual onset. Youth with HIV+ caregivers reported a slower rate of onset of penetrative sex across the adolescent years. We discuss our findings by highlighting the role that both youth and caregiver HIV status play in the onset of sexual behavior across adolescence. PMID:21797715

Relationships between Young Children in Full-Time Day Care and Their Caregivers: A Qualitative Study of Parental and Caregiver Perspectives

ERIC Educational Resources Information Center

Drugli, May Britt; Mari Undheim, Anne

2012-01-01

We studied the quality of caregiver-child relationships from the perspectives of parents and caregivers of young children in full-time day care. The sample consisted of 41 parents of children aged two years or younger (22 boys and 19 girls) in day care, and 35 of their caregivers. Parents and caregivers were interviewed. Parents and caregivers…

Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: an initiative of medical social workers.

PubMed

Chan, Wallace Chi Ho; Chan, Christopher L F; Suen, Margaret

2013-11-01

Family caregivers may often experience caregiving stress and burden. To systematically assess this issue, medical social workers may need to use a brief and valid measurement in their practice. In the Hong Kong Chinese context, one additional challenge is to examine whether a measurement developed in the West is valid for Hong Kong Chinese caregivers. Thus, medical social workers in Hong Kong initiated this research study to validate the Chinese version of the Modified Caregiver Strain Index (C-M-CSI). A total of 223 Chinese caregivers of patients with various chronic illnesses were recruited for this validation study. C-M-CSI demonstrated good reliability (Cronbach's alpha coefficient = .91), concurrent validity with the Chinese version of the Caregiver Burden Inventory, and discriminant validity with the Chinese version of the Meaning in Life Questionnaire. Factor analysis yielded a single factor as the original M-CSI, which explained 49 percent of variance. Construct validity was shown by differentiating spousal and nonspousal caregivers, as well as caregivers of patients with and without behavioral problems. C-M-CSI is recommended as a brief and valid measurement that can be used by medical social workers in assessing the caregiving strain of Chinese caregivers of patients in Hong Kong.

Burden among male caregivers assisting people with multiple sclerosis.

PubMed

Buchanan, Robert J; Radin, Dagmar; Huang, Chunfeng

2010-12-01

Caregiver burden is a multidimensional response to many factors associated with providing assistance to people with multiple sclerosis (MS), including physical, psychological, emotional, and social stressors. The aim of this analysis was to identify the characteristics of male informal caregivers, the assistance provided, and the people receiving assistance who were associated with the burden of care. Data were collected from a national survey (which included the Mental Component Summary of the SF-8 Health Survey) of informal caregivers and analyzed using an ordered logistic regression model to identify characteristics associated with burden among male informal caregivers. Greater burden among male caregivers was associated with significantly greater hours per week providing assistance (P = 0.009) and significantly greater restriction on the caregiver's ability to perform daily activities (P < 0.001) due to assisting the person with MS. We found a strong association between the perception of burden and the mental health status of the male caregiver (P < 0.001). Our findings highlight the strong association of caregiver burden and the Mental Component Summary of the SF-8. Reducing burden may improve the mental health of informal caregivers. Health professionals treating either male caregivers or people with MS should be sensitive to the impact that providing assistance has on the mental health of informal caregivers. Copyright © 2010. Published by EM Inc USA.

Anticipatory grief in new family caregivers of persons with mild cognitive impairment and dementia.

PubMed

Garand, Linda; Lingler, Jennifer H; Deardorf, Kaitlyn E; DeKosky, Steven T; Schulz, Richard; Reynolds, Charles F; Dew, Mary Amanda

2012-01-01

Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms, and marital quality. The mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty in functioning, whereas MCI caregivers focused on themes of "missing the person" they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden, and higher depression levels each had independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief.

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

PubMed

Basnyat, Iccha; Chang, Leanne

2017-09-01

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

Marianismo and Caregiving Role Beliefs Among U.S.-Born and Immigrant Mexican Women

PubMed Central

Anthony, Katherine P.

2016-01-01

Objectives: We aimed to explore how women of Mexican-origin conceptualized caregiving as a construct in terms of cultural beliefs, social norms, role functioning, and familial obligations. We examined the personal experiences of U.S-born and immigrant Mexican female caregivers to identify how these 2 groups differed in their views of the caregiver role. Methods: We conducted 1-time in-depth interviews with 44 caregivers living in Southern California. Our study was guided by marianismo, a traditional role occupied by women in the Mexican family. We analyzed data from a grounded theory approach involving the constant comparative method to refine and categorize the data. Results: The majority of all caregivers had similar views about caregiving as an undertaking by choice, and almost all caregivers engaged in self-sacrificing actions to fulfill the marianismo role. Despite these similarities, U.S.-born and immigrant caregivers used different words to describe the same concepts or assigned different meanings to other key aspects of caregiving, suggesting that these 2 groups had different underlying motivations for caregiving and orientations to the role. Discussion: Our findings highlight the complexity of language and culture in underlying caregiving concepts, making the concepts challenging to operationalize and define in a heterogeneous sample of Latinos. PMID:26362602

Impact of Noncaregiving-Related Stressors on Informal Caregiver Outcomes.

PubMed

Austrom, Mary Guerriero; Lu, Yvonne Yueh-Feng; Perkins, Anthony J; Boustani, Malaz; Callahan, Christopher M; Hendrie, Hugh C

2014-08-01

Caregivers of persons with dementia are stressed. Stressors not related to care recipients' needs impact caregiver outcomes, yet are seldom reported. The purpose of this study was to report the most stressful events experienced by spouse caregivers of older adults with Alzheimer s disease during a 6-month period. 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher's exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. Caregivers reported no stressors 21.5% of the time, 1-2 stressors 25% of the time, and 3 stressors 53% of the time with 318 stressors reported in total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between the Most Stressful Events and depression (p = 0.016), mobility (p = 0.024) and caregiver issues (p = 0.009) subscales of R-MBPC. Results can be used to develop targeted intervention and support strategies for spouse caregivers experiencing non-caregiving related stressorsas well as the traditional challenges with caregiving related issues. © The Author(s) 2014.

Understanding How to Support Family Caregivers of Seniors with Complex Needs

PubMed Central

Charles, Lesley; Brémault-Phillips, Suzette; Parmar, Jasneet; Johnson, Melissa; Sacrey, Lori-Ann

2017-01-01

Purpose of the Study The purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them. Design and Methods A CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provision of caregiver supports. Day 2 focused on determination of research priorities. Results Identified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving. Implication A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign. PMID:28690707

Anticipatory Grief in New Family Caregivers of Persons with Mild Cognitive Impairment and Dementia

PubMed Central

Garand, Linda; Lingler, Jennifer H.; Deardorf, Kaitlyn E.; DeKosky, Steven T.; Schulz, Richard; Reynolds, Charles F.; Dew, Mary Amanda

2011-01-01

Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer’s Disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms and marital quality. Mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty functioning whereas MCI caregivers focused on themes of “missing the person” they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden and higher depression levels each bore independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief. PMID:21946013

Caregiver's perception of child's oral health status among low-income African Americans.

PubMed

Sohn, Woosung; Taichman, L Susan; Ismail, Amid I; Reisine, Susan

2008-01-01

This study aimed to: (1) compare caregivers' perceptions of their children's oral health status with clinical findings; and (2) investigate the influence of caregivers' attitudes, beliefs, and knowledge concerning dental caries development and oral health on caregivers' perception levels of their children's oral health status. A representative sample of low-income African American families (0- to 5-year-olds and their caregivers) in Detroit, Mich was interviewed. Caregivers were asked to assess their own and their children's oral health status. All children and their caregivers received dental examinations. This study included data from 885 caregivers with children aged 1 year or older. Approximately 79% of caregivers rated their children's oral health as good to excellent, and 21% rated it as fair to poor. Caregivers' perception of their children's oral health was significantly associated with their children's caries experience, as measured by the number of decayed, missing, and filled tooth surfaces. It was also associated with limitations of oral functions, such as chewing difficulty. Poorer perceptions of caregivers' oral health and fatalistic attitudes toward children's oral health were significantly associated with poorer perception of their children's oral health. Caregivers' perception of their children's oral health status is a significant indicator of the children's clinical caries experience.

Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research.

PubMed

Douglas, Sara L; Mazanec, Polly; Lipson, Amy; Leuchtag, Mary

2016-04-10

Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.

Use of Zarit Burden Interview in analysis of family caregivers' perception among Taiwanese caring with hospitalized relatives.

PubMed

Yeh, Pi-Ming; Chang, Yuanmay

2015-10-01

This study was conducted to examine the relationships between family caregivers' perception of caregiving and its influencing factors among Taiwanese with hospitalized relatives. The study used a cross-sectional and descriptive correlational design. A convenience sample of 200 primary caregivers of hospitalized patients diagnosed with cancer, stroke and chronic illness was recruited in a Taiwanese Medical Center; this focus was chosen because cancer, stroke and chronic illness generally require long term care. Data were collected by structured questionnaires. Pearson product-moment correlation and stepwise multiple regression analyses were used to analyse the results of this study. Family caregivers who lacked family support and whose patients' ADL (activities of daily living) dependency was increasing experienced a greater caregiving burden. Family caregivers who had better psychological well-being, better quality of relationship and more caregiving knowledge experienced a lower caregiving burden. Quality of relationship, lack of family support and patients' ADL dependency accounted for 43% of the Zarit Burden Interview variance. The results indicated that family caregivers' perception of caregiving included sacrifice, strain, embarrassment, anger and loss of control. It is vital for nurses to understand these caregiving perceptions and their related factors to provide a holistic care plan. © 2014 Wiley Publishing Asia Pty Ltd.

A theory of meaning of caregiving for parents of mentally ill children in Taiwan, a qualitative study.

PubMed

Yen, Wen-Jiuan; Teng, Ching-Hwa; Huang, Xuan-Yi; Ma, Wei-Fen; Lee, Sheuan; Tseng, Hsiu-Chih

2010-01-01

The aim of this study is to generate a theory of meaning of care-giving for parents of mentally ill children in Taiwan. Studies indicate that the meaning of care-giving plays an important role in the psychological adjustment of care-givers to care-giving. With a positive meaning of care-giving, care-givers can accept their roles and adapt to them more readily. The research employs the qualitative method of grounded theory, the inquiry is based on symbolic interactionism. Twenty parental care-givers of children with schizophrenia were recruited at a private hospital in central Taiwan. Semi-structured interviews were conducted. A comparative method was used to analyse the text and field notes. Responsibility (zeren) emerges as the core category or concept. Responsibility expresses broadly the behavioural principles that are culturally prescribed and centred on familial ethics and values. Related concepts and principles that influence caregiver actions and affections include a return of karma, challenges from local gods and fate. By maintaining their culturally prescribed interpretations of care-giving, parents hope to give care indefinitely without complaints. The findings clearly suggest that the meaning of care-giving is determined through a process of internal debate that is shaped by culturally specific concepts. The paper attempts to explain some of these culturally specific determinants and explanations of care-giving behaviour. The theory contributes knowledge about the meaning of care-giving for parents of mentally ill children in Taiwan. It should be useful reference for mental health professionals, who provide counselling services to ethnically Taiwanese care-givers.

Improving psychosocial outcomes for caregivers of people with poor prognosis gastrointestinal cancers: a randomized controlled trial (Family Connect).

PubMed

Shaw, Joanne M; Young, Jane M; Butow, Phyllis N; Badgery-Parker, Tim; Durcinoska, Ivana; Harrison, James D; Davidson, Patricia M; Martin, David; Sandroussi, Charbel; Hollands, Michael; Joseph, David; Das, Amitabha; Lam, Vincent; Johnston, Emma; Solomon, Michael J

2016-02-01

This study investigated the effectiveness of a structured telephone intervention for caregivers of people diagnosed with poor prognosis gastrointestinal cancer to improve psychosocial outcomes for both caregivers and patients. Caregivers of patients starting treatment for upper gastrointestinal or Dukes D colorectal cancer were randomly assigned (1:1) to the Family Connect telephone intervention or usual care. Caregivers in the intervention group received four standardized telephone calls in the 10 weeks following patient hospital discharge. Caregivers' quality of life (QOL), caregiver burden, unmet supportive care needs and distress were assessed at 3 and 6 months. Patients' QOL, unmet supportive care needs, distress and health service utilization were also assessed at these time points. Caregivers (128) were randomized to intervention or usual care groups. At 3 months, caregiver QOL scores and other caregiver-reported outcomes were similar in both groups. Intervention group participants experienced a greater sense of social support (p = .049) and reduced worry about finances (p = .014). Patients whose caregiver was randomized to the intervention also had fewer emergency department presentations and unplanned hospital readmissions at 3 months post-discharge (total 17 vs. 5, p = .01). This standardized intervention did not demonstrate any significant improvements in caregiver well-being but did result in a decrease in patient emergency department presentations and unplanned hospital readmissions in the immediate post-discharge period. The trend towards improvements in a number of caregiver outcomes and the improvement in health service utilization support further development of telephone-based caregiver-focused supportive care interventions.

Does an educational workshop have an impact on caregivers' levels of knowledge about cerebral palsy? A comparative, descriptive cross-sectional survey of Zimbabwean caregivers.

PubMed

Dambi, Jermaine M; Mandizvidza, Celia; Chiwaridzo, Matthew; Nhunzvi, Clement; Tadyanemhandu, Cathrine

2016-12-01

The diagnosis of a child with a life-long disability, such as cerebral palsy (CP), can be catastrophic to parents. It is often accompanied by feelings of despair, anxiety, hopelessness, and the fear of the unknown. Knowledge about CP is thus essential for caregiver adjustment and preparation for the caregiving role. However, there is a paucity of empirical evidence regarding the best method for educating caregivers. The aim of this study was therefore to evaluate the impact of an educational intervention on caregivers' knowledge about cerebral palsy. This cross-sectional survey included 49 caregivers of children with cerebral palsy. Convenience sampling was used to select participants from two central hospitals in Harare, Zimbabwe. The caregivers were divided into two groups based on whether or not they had attended an educational workshop. The knowledge of cerebral palsy questionnaire (KCPQ) was administered once to assess the caregivers' CP knowledge. The caregivers were comparable in terms of sociodemographic characteristics. The mean KCPQ scores for caregivers who attended workshops was 17.4 (SD 1.5), versus 13.8 (SD 2.5) for those without exposure to workshops. The differences between the two groups was statistically significant (U = 77.0, Z = -4.45, and P < 0.001). Our findings suggest that educational workshops may lead to improved CP knowledge among caregivers. This may better equip parents and guardians to meet the extra caregiving demands associated with CP, leading to improved health outcomes for children with CP and their caregivers.

Family caregiver preferences for patient decisional control among Hispanics in the United States and Latin America

PubMed Central

Yennurajalingam, Sriram; Noguera, Antonio; Parsons, Henrique Afonseca; Torres-Vigil, Isabel; Duarte, Eva Rosina; Palma, Alejandra; Bunge, Sofia; Palmer, J. Lynn; Delgado-Guay, Marvin Omar; Bruera, Eduardo

2013-01-01

Background Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decisional control at the end of life among Hispanics. Aims To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Latin America (HLA) and Hispanic American (HUSA) caregivers. Design We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decisional control were evaluated using the Control Preference Scale. Caregivers’ and patients’ socio-demographic variables, patient performance status, and HUSA patient acculturation level was also collected. Participants A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results Caregiver preference of patients decisions control was passive, shared, and active by 10 (11%), 45 (52%) and 32 (37%) HUSA caregivers and 54 (19%), 178 (62%) and 55 (19%) HLA caregivers (p=0.0023). Caregiver acculturation level did not affect the preferences of the HUSA sample (p=0.60). Conclusions Most Hispanic family caregivers preferred the patient to make shared decisions. HLA caregivers preferred more frequently patients to assume a passive decisional role. Acculturation did not influence the preferences of HUSA caregivers. PMID:23670718

Caregivers of the chronically critically ill after discharge from the intensive care unit: six months' experience.

PubMed

Choi, JiYeon; Donahoe, Michael P; Zullo, Thomas G; Hoffman, Leslie A

2011-01-01

Chronically critically ill patients typically undergo an extended recovery after discharge from the intensive care unit, making involvement of family caregivers essential. Prior studies provide limited detail about specific ways this experience affects caregivers. To (1) describe lifestyle restrictions and distress among caregivers of chronically critically ill patients 1 and 6 months after discharge and (2) explore how caregivers' lifestyle restrictions and distress differ according to patients' and caregivers' characteristics. Sixty-nine chronically critically ill patients and their family caregivers completed follow-up at 1 and 6 months after discharge from the intensive care unit. Data were collected from medical records and survey via telephone or mail. Caregivers' perceived lifestyle restrictions (Changes in Role Function) decreased from 1 month (mean [SD], 23.0 [8.3]) to 6 months (19.4 [8.6]) after discharge (P = .003), although patients' problem behaviors and caregivers' distress (8.9 [9.3] vs 7.9 [9.6], respectively; P = .32) did not change. Change in caregivers' lifestyle restrictions differed by patients' disposition (P = .02) and functional status (Health Assessment Questionnaire; P = .007). Caregiver's lifestyle restrictions remained high when patients never returned home or never recovered their preadmission functional status. Caregivers reported the most restrictions in social life and personal recreation. Patients' negative emotions and pain caused the most caregiver distress. Caregivers of chronically critically ill patients perceived fewer lifestyle restrictions over time but reported no change in patients' problem behaviors or distress. Lifestyle restrictions and distress remained high when patients never returned home or regained their preadmission functional status.

Testing the effectivity of the mixed virtual reality training Into D'mentia for informal caregivers of people with dementia: protocol for a longitudinal, quasi-experimental study.

PubMed

Jütten, Linda Helena; Mark, Ruth Elaine; Maria Janssen, Ben Wilhelmus Jacobus; Rietsema, Jan; Dröes, Rose-Marie; Sitskoorn, Margriet Maria

2017-08-21

Informal caregivers for people with dementia (hereafter: caregivers) often feel (over)burdened by the care for a loved one with dementia, and this can have various deleterious effects on both caregivers and patients. Support for caregivers is urgently needed, and for this reason, a dementia simulator (Into D'mentia) was developed in which caregivers experience what it is like to have dementia. The simulator attempts to heighten caregivers' empathy and understanding for the patient and, in turn, diminish their own caregiver burden. The current study evaluates whether the simulator is effective on a number of outcomes. A longitudinal, quasi-experimental study is ongoing in the Netherlands. We aim to recruit 142 caregivers in total divided over two groups: 71 caregivers in the intervention group and 71 caregivers in the control group. All participants will complete interviews and questionnaires at four time points: at baseline, 1 week, 2.5 months and 15 months after the training. The primary outcomes include empathy, caregiver burden, caregiver's sense of competence, social reliance, anxiety, depression and caregivers' subjective and objective health. This study is being carried out in agreement with the Declaration of Helsinki, and the protocol has been approved by the local ethics committees. This study is registered with The Netherlands National Trial Register (NNTR5856). © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries.

PubMed

Calvó-Perxas, Laia; Vilalta-Franch, Joan; Litwin, Howard; Turró-Garriga, Oriol; Mira, Pedro; Garre-Olmo, Josep

2018-01-01

In Europe, informal caregiving is frequent and is expected to grow. Caregiving has an impact on caregivers' health, but its effect may vary according to the policies of support that are available to caregivers. The aim of this study was to assess the association between the policies of support to caregivers available in 12 European countries and the health of caregivers, considering separately the policies based on financial help and those based on training and other non- financial services. We used data from 13,507 caregivers from 12 European countries from the fifth wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) to build a path model. Poor health among caregivers was associated with living in a family-based care country (β = 0.50; 95% CI = 0.42-0.59), and with an increased extent of caregiving (β = 0.18; 95% CI = 0.15-0.22). Non-financial support measures seem to have a larger protective impact (β = -0.33; 95% CI = -0.38 - -0.28) on the health of caregivers than do financial support measures (β = 0.03; 95% CI = 0.01-0.04), regardless of the gender of the caregiver. According to our results, the currently available policies of support associated with better health among caregivers are those that: 1) provide them with some free time, 2) help them to deal emotionally with caregiving, and 3) give them skills to both improve the care situation and to deal with it better.

Psychological Well-being of Grandparents Caring for Grandchildren among Older Chinese Americans: Burden or Blessing?

PubMed Central

Tang, Fengyan; Xu, Ling; Chi, Iris; Dong, XinQi

2016-01-01

The rapid increase in grandparents caring for grandchildren has received growing attention; however, relatively little research has focused on Chinese American grandparents and their caregiving experiences. Drawing on cross-sectional data from the Population Study of Chinese Elderly (PINE) – a community-engaged, epidemiological study of Chinese American adults aged 60 and older, we examined the relationships between caregiving experiences and psychological well-being. Among 2,365 older adults who answered the question about grandparent caregiving, 818 (35%) were designated as caregivers, spending an average of 12 hours a week on childcare. About one in five caregivers reported caregiving burden, pressure, or negative health effect of caregiving. Compared with noncaregivers, caregivers had better psychological well-being, with significantly lower levels of depressive symptoms, anxiety, stress, and loneliness. But increased levels of caregiving burden, pressure from adult children, and perceived negative effect were related to increased rates for psychological distress. With a strong cultural expectation for family care, grandparent caregiving is generally associated with positive psychological well-being; but it is also a stress process, especially when older adults feel pressured and/or burdened to provide childcare. The study implies that cultural values and life transitions may shape grandparent caregiving experiences and well-being, pointing to the importance of respecting cultural differences in family caregiving. Understanding both positive and negative aspects of grandparent caregiving and the underlying mechanisms will help healthcare professionals identify caregivers at risk of psychological distress and provide proper interventions to attenuate negative outcomes while maximizing positive experience in Chinese American older adults. PMID:27641829

Association Between Caregiver Stress and Behavioral Problems in the Children of Incarcerated Fathers in Hong Kong.

PubMed

Chui, Wing Hong

2016-10-01

Objectives Caregivers of children with incarcerated parents have received little attention in the literature, though they face unique incarceration-related challenges. General caregiver research has highlighted associations between caregiver distress and children's behavioral problems, even implying that the depressive tendencies of caregivers can be 'transmitted'. The current study investigated the applicability of this notion to caregivers responsible for children of incarcerated fathers. Methods Fifty-four female caregivers of children with incarcerated parents were recruited via collaboration with a non-governmental organization. Their levels of stress and depression were measured using questionnaires, as were the behavioral problems of children under their care. The relationships between the variables were examined. Results The results firstly suggest that these caregivers are vulnerable to psychological distress, with around 57 % of them suffering from borderline to severe depression. Obtained socio-demographic characteristics were not found to have any bearing on the psychosocial functioning of caregivers or children-rather, all psychosocial variables were interlinked, and further analyses revealed that the depression of caregivers mediated the relationship between their perceived stress and internalizing/externalizing behavioral problems of the child (β = .628 and β = .468 respectively), implicating depression as a mechanism via which adversity can be transferred from a caregiver to a child. Conclusions Increasing the focus on a caregiver's mental health may be an efficacious strategy in research and practice, perhaps by providing more support for caregivers and implementing joint caregiver-child interventions to more holistically alleviate problems in families affected by parental incarceration. Limitations of the current study and further recommendations are also discussed.

Caregiver Reports of Patient-Initiated Violence in Psychosis

PubMed Central

Onwumere, Juliana; Grice, Sarah; Garety, Philippa; Bebbington, Paul; Dunn, Graham; Freeman, Daniel; Fowler, David; Kuipers, Elizabeth

2014-01-01

Objective: Aggressive behaviour in psychosis is not uncommon. Community provision for people with psychosis has left informal caregivers to take on a greater role in their care. However, few studies have explored links between patient-initiated violence in mental health caregiving relationships and caregiver functioning. Our study investigated caregiver reports of aggressive acts committed by their relative with psychosis and their links to caregiver appraisals of the caregiving relationship and caregiver outcomes. Method: Caregivers of patients with a recent relapse of psychosis, recruited to a psychological therapy trial, completed the audiotaped Camberwell Family Interview at baseline. This semi-structured interview includes questions on the quality of the relationship between caregiver and patient, and patient history of violence. Seventy-two transcripts of interviews were assessed for reports of patient-initiated violence. Results: One-half of the caregiver sample (52.9%) reported an incident of patient-initiated violence during their interview; 62.2% of these involved violence toward themselves, and 24.3% toward property. Reports of patient violence were associated with caregiver ratings of hostility expressed toward patients, lower self-esteem, and emotion-focused coping. People caring on their own were more likely to report incidents of patient violence. Younger patients, males, and inpatients were more frequently identified as having a history of this kind of violence. Conclusions: Our findings suggested that caregiver reports of patient-initiated violence in psychosis are not uncommon. Mental health staff need to be aware of the risks of such violence for caregivers of people with psychosis, and consider appropriate procedures for minimizing it. Clinical Trial Registration Number: ISRCTN83557988 PMID:25007421

Korean version of the Revised Caregiving Appraisal Scale: a translation and validation study.

PubMed

Lee, JuHee; Friedmann, Erika; Picot, Sandra J; Thomas, Sue Ann; Kim, Cho Ja

2007-08-01

This paper is a report of a study to examine the reliability and validity of a Korean version of the Revised Caregiving Appraisal Scale with Korean caregivers of older stroke survivors. The Revised Caregiving Appraisal Scale was developed in the United States of America for an American English-speaking population to measure primary caregivers' appraisals of potential stressors and the efficacy of their coping efforts related to caregiving experiences. Using the back-translation method, the instrument was translated into Korean. The Korean version of the Revised Caregiving Appraisal Scale was self-administered by 147 primary family caregivers recruited from three outpatient clinics and two home health agencies in Korea. The study was conducted in 2005. In this sample, Cronbach's alpha for the total scale was 0.86. Reliability coefficients for each of the five subscales ranged from 0.40 to 0.85. Two subscales, burden and satisfaction, showed good reliability; one subscale, impact, showed marginally acceptable reliability; two subscales, mastery and demand, had low reliability. Principal components factor analysis of the Korean version of the Revised Caregiving Appraisal Scale yielded six factors. Except for the mastery domain, which was divided into two factors, the other factors were similar to those in the original scale. The Korean version of the Revised Caregiving Appraisal Scale had adequate reliability and validity in a sample of Korean caregivers of stroke survivors. It can be used to assess the impact of caregiving and interventions on Korean caregiver attitudes. Further studies are needed with different categories of caregiver.

Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study.

PubMed

Gitlin, Laura N; Winter, Laraine; Burke, Janice; Chernett, Nancy; Dennis, Marie P; Hauck, Walter W

2008-03-01

To test whether the Tailored Activity Program (TAP) reduces dementia-related neuropsychiatric behaviors, promotes activity engagement, and enhances caregiver well-being. Prospective, two-group (treatment, wait-list control), randomized, controlled pilot study with 4 months as main trial endpoint. At 4 months, controls received the TAP intervention and were reassessed 4 months later. Patients' homes. Sixty dementia patients and family caregivers. The eight-session occupational therapy intervention involved neuropsychological and functional testing, selection, and customization of activities to match capabilities identified in testing, and instruction to caregivers in use of activities. Behavioral occurrences, activity engagement, and quality of life in dementia patients; objective and subjective burden and skill enhancement in caregivers. At 4 months, compared with controls, intervention caregivers reported reduced frequency of problem behaviors, and specifically for shadowing and repetitive questioning, and greater activity engagement including the ability to keep busy. Fewer intervention caregivers reported agitation or argumentation. Caregiver benefits included fewer hours doing things and being on duty, greater mastery, self-efficacy, and skill enhancement. Wait-list control participants following intervention showed similar benefits for reductions in behavioral frequency and caregiver hours doing things for the patient and mastery. Caregivers with depressed symptoms derived treatment benefits similar to nondepressed caregivers. Tailoring activities to the capabilities of dementia patients and training families in activity use resulted in clinically relevant benefits for patients and caregivers. Treatment minimized trigger behaviors for nursing home placement and reduced objective caregiver burden. Noteworthy is that depressed caregivers effectively engaged in and benefited from the intervention.

Invisible Care: Friend and Partner Care Among Older Lesbian, Gay, Bisexual, and Transgender (LGBT) Adults.

PubMed

Shiu, Chengshi; Muraco, Anna; Fredriksen-Goldsen, Karen

2016-01-01

Lesbian, gay, bisexual, and transgender (LGBT) older adult caregivers may encounter obstacles in obtaining health and aging services due to discrimination in service and legal systems. The caregiving relationships in LGBT communities also differ from the general population in that friends are providing a large portion of informal care. This article examines how the relational context of caregiving relates to caregiving demands and resources, which in turn, influence perceived stress and depressive symptomatology among older LGBT caregivers. Using data from the National Health, Aging, and Sexuality Study: Caring and Aging with Pride, this study examines 451 participants who are providing caregiving to partners and friends. Structural equation modeling was applied to estimate the associations among the caregiver-care recipient relationship and caregiving demands, resources, perceived stress, and depressive symptomatology. On average, as compared with those caring for partners, those who provided care to friends reported experiencing lower levels of caregiving demands and lower levels of social support. The lower caregiving demands correlated positively with both lower perceived stress and less severe depressive symptomatology; however, the lower levels of social support were related to higher perceived stress and higher depressive symptomatology. Caregiving provided by friends, which has long been under recognized, plays an important role in the LGBT community. Because lower levels of caregiving demands are offset by less social support, LGBT friend-caregivers experience similar levels of perceived stress and depressive symptomatology to those providing care to spouses and partners. Policy and service reforms are needed to better acknowledge the continuum of informal caregiving relationships.

Depression in individuals with chronic obstructive pulmonary disease and their informal caregivers.

PubMed

Badr, Hoda; Federman, Alex D; Wolf, Michael; Revenson, Tracey A; Wisnivesky, Juan P

2017-09-01

Individuals with chronic obstructive pulmonary disease (COPD) and their caregivers are at high risk for developing depression. Depression can adversely affect the quality of life of patients and caregivers; however, studies in COPD have largely examined predictors of patient and caregiver depression in isolation. This dyadic study examined individual-level predictors of patient and caregiver depression in COPD (i.e. actor effects) as well as how dyad members effect each other's depression (i.e. partner effects). Survey data were collected from 89 patient-caregiver dyads that were enrolled in a multi-site cohort study. Participants were predominantly women (61% of patients and 76% of caregivers) and racial/ethnic minorities (65% of patients and 63% of caregivers). Based on PHQ9 cutoffs, 30% of patients and 20% of caregivers had mild depression; 30% of patients and 8% of caregivers had moderate to severe depression. Multilevel models with the dyad as the unit of analysis showed that less frequent patient self-management, higher levels of caregiver burden, and being in poorer health were associated with higher levels of depression for both dyad members. Higher levels of depression in a partner were also associated with higher levels of depression for women, regardless of whether women were patients or caregivers. Findings suggest that similar factors predict patient and caregiver depression in COPD and that women are at increased risk for developing depression when their partners are depressed. Dyadic psychosocial interventions that target patients and their caregivers may thus be beneficial in terms of addressing depression in this this vulnerable population.

The lived experience of caregivers of persons with heart failure: A phenomenological study.

PubMed

Petruzzo, Antonio; Paturzo, Marco; Naletto, Monica; Cohen, Marlene Z; Alvaro, Rosaria; Vellone, Ercole

2017-10-01

Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy. To describe the lived experience of the caregivers of HF patients. A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness. Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient. The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

Investigating burden of informal caregivers in England, Finland and Greece: an analysis with the short form of the Burden Scale for Family Caregivers (BSFC-s).

PubMed

Konerding, Uwe; Bowen, Tom; Forte, Paul; Karampli, Eleftheria; Malmström, Tomi; Pavi, Elpida; Torkki, Paulus; Graessel, Elmar

2018-02-01

The burden of informal caregivers might show itself in different ways in different cultures. Understanding these differences is important for developing culture-specific measures aimed at alleviating caregiver burden. Hitherto, no findings regarding such cultural differences between different European countries were available. In this paper, differences between English, Finnish and Greek informal caregivers of people with dementia are investigated. A secondary analysis was performed with data from 36 English, 42 Finnish and 46 Greek caregivers obtained with the short form of the Burden Scale for Family Caregivers (BSFC-s). The probabilities of endorsing the BSFC-s items were investigated by computing a logit model with items and countries as categorical factors. Statistically significant deviation of data from this model was taken as evidence for country-specific response patterns. The two-factorial logit model explains the responses to the items quite well (McFadden's pseudo-R-square: 0.77). There are, however, also statistically significant deviations (p < 0.05). English caregivers have a stronger tendency to endorse items addressing impairments in individual well-being; Finnish caregivers have a stronger tendency to endorse items addressing the conflict between the demands resulting from care and demands resulting from the remaining social life and Greek caregivers have a stronger tendency to endorse items addressing impairments in physical health. Caregiver burden shows itself differently in English, Finnish and Greek caregivers. Accordingly, measures for alleviating caregiver burden in these three countries should address different aspects of the caregivers' lives.

Perceptions of the care received from Australian palliative care services: A caregiver perspective.

PubMed

Pidgeon, Tanya M; Johnson, Claire E; Lester, Leanne; Currow, David; Yates, Patsy; Allingham, Samuel F; Bird, Sonia; Eagar, Kathy

2018-04-01

ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

Mental and physical health correlates among family caregivers of patients with newly-diagnosed incurable cancer: a hierarchical linear regression analysis.

PubMed

Shaffer, Kelly M; Jacobs, Jamie M; Nipp, Ryan D; Carr, Alaina; Jackson, Vicki A; Park, Elyse R; Pirl, William F; El-Jawahri, Areej; Gallagher, Emily R; Greer, Joseph A; Temel, Jennifer S

2017-03-01

Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Caregivers' mental health was worse than the U.S. national population (M = 44.31, p < .001), yet their physical health was better (M = 56.20, p < .001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = -8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = -0.17, p = .01) caregivers with low educational attainment (B = 4.36, p < .001) who cared for patients reporting low social well-being (B = 0.35, p = .05) reported worse physical health. In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.

Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups.

PubMed

Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel

2015-01-01

A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the evolving caregiver needs at different stages of the disease.

Transnational caregiving: Part 1, caring for family relations across nations.

PubMed

Dhar, V Erica

2011-01-01

This article concerns how globalization and the aging of the world's population are affecting the already complex issue of intergenerational transnational caregiving. Globalization has caused an increase in workforce mobility with large numbers of individuals seeking employment overseas. This, coupled with increased longevity globally, has resulted in many workers leaving their elderly parents in need of care in their home countries. This has spawned caregiving across national borders, or caring for family relations across nations. Currently in the United States, not enough emphasis is given to family caregiving. Data compiled by AARP and the National Alliance for Caregiving estimate the economic value for this group of family caregivers in 2007 to be $375 billion, accounting for 34-52 million family caregivers per given year. This does not include those families who are transnational caregivers. The seminal work in this emerging field has been done by social anthropologists Loretta Baldassar, Cora Velekoop Baldock, and Raelene Wilding, who have defined the components of transnational caregiving based on an ethnographic study using qualitative data to study nine immigrant communities in Western Australia. Although their research focused on caregiving from a distance, additional work has been added to the discussion by introducing the element of "care drain" and further cultural perspectives. Therefore, this research is an exploratory study on intergenerational transnational caregiving within the context of the changing world and its demographics. Within the context of globalization and global aging, the following questions are addressed: What is the significance of family caregiving? What is a transnational? How has technology changed "transnationalism" today? What are the elements that comprise transnational caregiving? How does culture play a role in transnational caregiving? What are some of the national initiatives undertaken by governments to aid in workforce issues and recognition of caregiving organizations? By exploring these questions, it is hoped that there will be a better understanding of transnational caregiving and its relevance in all societies.

Validation of Caregiver-Centered Delirium Detection Tools: A Systematic Review.

PubMed

Rosgen, Brianna; Krewulak, Karla; Demiantschuk, Danielle; Ely, E Wesley; Davidson, Judy E; Stelfox, Henry T; Fiest, Kirsten M

2018-04-18

To summarize the validity of caregiver-centered delirium detection tools in hospitalized adults and assess associated patient and caregiver outcomes. Systematic review. We searched MEDLINE, EMBASE, PsycINFO, CINAHL, and Scopus from inception to May 15, 2017. Hospitalized adults. Caregiver-centered delirium detection tools. We drafted a protocol from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Two reviewers independently completed abstract and full-text review, data extraction, and quality assessment. We summarized findings using descriptive statistics including mean, median, standard deviation, range, frequencies (percentages), and Cohen's kappa. Studies that reported on the validity of caregiver-centered delirium detection tools or associated patient and caregiver outcomes and were cohort or cross-sectional in design were included. We reviewed 6,056 titles and abstracts, included 6 articles, and identified 6 caregiver-centered tools. All tools were designed to be administered in several minutes or less and had 11 items or fewer. Three tools were caregiver administered (completed independently by caregivers): Family Confusion Assessment Method (FAM-CAM), Informant Assessment of Geriatric Delirium (I-AGeD), and Sour Seven. Three tools were caregiver informed (administered by a healthcare professional using caregiver input): Single Question in Delirium (SQiD), Single Screening Question Delirium (SSQ-Delirium), and Stressful Caregiving Response to Experiences of Dying. Caregiver-administered tools had better psychometric properties (FAM-CAM sensitivity 75%, 95% confidence interval (CI)=35-95%, specificity 91%, 95% CI=74-97%; Sour Seven positive predictive value 89.5%, negative predictive value 90%) than caregiver-informed tools (SQiD: sensitivity 80%, 95% CI=28.4-99.5%; specificity 71%, 95% CI=41.9-91.6%; SSQ-Delirium sensitivity 79.6%, specificity 56.1%). Delirium detection is essential for appropriate delirium management. Caregiver-centered delirium detection tools show promise in improving delirium detection and associated patient and caregiver outcomes. Comparative studies using larger sample sizes and multiple centers are required to determine validity and reliability characteristics. © 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.

Family caregivers of patients with frontotemporal dementia: An integrative review.

PubMed

Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar

2016-03-01

The purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers' health and well-being, and (3) identify coping strategies used by family caregivers. Frontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia. An integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles. Findings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful. Family caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden. Copyright © 2015 Elsevier Ltd. All rights reserved.

Assessment of Caregiver Inventory for Rett Syndrome

ERIC Educational Resources Information Center

Lane, Jane B.; Salter, Amber R.; Jones, Nancy E.; Cutter, Gary; Horrigan, Joseph; Skinner, Steve A.; Kaufmann, Walter E.; Glaze, Daniel G.; Neul, Jeffrey L.; Percy, Alan K.

2017-01-01

Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi…

Family Caregivers and Leisure: An Oxymoron?

ERIC Educational Resources Information Center

Bedini, Leandra A.

2002-01-01

Describes recent research findings which verify that the loss of leisure for caregivers relates to stress and health problems, discussing what parks and recreation professionals can do to help family caregivers lead balanced lives and examining psychological and physical effects of caregiving, caregivers' lack of leisure, the relationship between…

Caregivers - Multiple Languages

MedlinePlus

... window. Arabic (العربية) Expand Section For the Caregiver - English PDF For the Caregiver - العربية (Arabic) PDF American ... Cantonese dialect) (繁體中文) Expand Section For the Caregiver - English PDF For the Caregiver - 繁體中文 (Chinese, Traditional (Cantonese ...

Impact of caring for persons with Alzheimer's disease or dementia on caregivers' health outcomes: findings from a community based survey in Japan.

PubMed

Goren, Amir; Montgomery, William; Kahle-Wrobleski, Kristin; Nakamura, Tomomi; Ueda, Kaname

2016-06-10

This study assessed how family caregivers for patients with Alzheimer's disease (AD) or dementia in Japan differed from non-caregivers in characteristics and health outcomes (i.e., comorbidities, health-related quality of life [HRQoL], productivity, and resource use). Caregivers were hypothesized to experience significantly poorer outcomes than non-caregivers. Data were combined from the 2012 and 2013 National Health and Wellness Survey in Japan (n = 60000). Caregivers for adult relatives with AD or dementia were compared with non-caregivers on: comorbidities (including Patient Health Questionnaire (PHQ-9) cutoff scores suggesting presence/absence of major depressive disorder (MDD)), Work Productivity and Activity Impairment (WPAI), SF-36v2-based HRQoL, and healthcare resource utilization. Sociodemographic characteristics, health characteristics and behaviors, and Charlson comorbidity index (CCI) scores were compared across groups. Propensity matching, based on scores generated from a logistic regression predicting caregiving, was used to match caregivers with non-caregivers with similar likelihood of being caregivers. Bivariate comparisons across matched groups served to estimate outcomes differences due to caregiving. Among 55060 respondents, compared with non-caregivers (n = 53758), caregivers (n = 1302) were older (52.6 vs. 47.5 years), more frequently female (53 % vs. 49 %), married/partnered, frequent alcohol drinkers, current smokers, exercisers, and not employed, and they averaged higher CCI scores (0.37 vs. 0.14), all p < 0.05. Propensity scores incorporated sex, age, body mass index (BMI), exercise, alcohol, smoking, marital status, CCI, insured status, education, employment, income, and children in household. A greedy matching algorithm produced 1297 exact matches, excluding 5 non-matched caregivers. Health utilities scores were significantly lower among caregivers (0.724) vs. non-caregivers (0.764), as were SF-36v2 Physical and Mental Component Summary scores. Caregivers vs. non-caregivers had significantly higher absenteeism, presenteeism-related impairment, overall work impairment (25.8 % vs. 20.4 %, respectively), and activity impairment (25.4 % vs. 21.8 %), more emergency room and traditional provider visits (7.70 vs. 5.35) in the past six months, and more frequent MDD (14 % vs. 9 %), depression, insomnia, anxiety, and pain. Those providing care for patients with AD or dementia in Japan experienced significantly poorer HRQoL and greater comorbid risk, productivity impairment, and resource use. These findings inform the need for greater support for caregivers and their patients.

Typical and Atypical Dementia Family Caregivers: Systematic and Objective Comparisons

ERIC Educational Resources Information Center

Nichols, Linda O.; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J.; Zuber, Jeffrey

2011-01-01

This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1,476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II)…

The Stress Process of Family Caregiving in Institutional Settings.

ERIC Educational Resources Information Center

Whitlatch, Carol J.; Schur, Dorothy; Noelker, Linda S.; Ejaz, Farida K.; Looman, Wendy J.

2001-01-01

Adapts Stress Process Model (SPM) of family caregiving to examine predictors of depression in a sample of caregivers (N=133) with demented relatives residing in suburban skilled nursing facilities. Results suggest that caregiver depression is closely linked to how well resident and caregiver adjust to the nursing home environment. (BF)

Caregivers of Alzheimer's Disease and Stroke Patients: Immunological and Psychological Considerations.

ERIC Educational Resources Information Center

Reese, Dawn R.; And Others

1994-01-01

Examined psychological and immunological changes among 25 caregivers of Alzheimer's disease (AD) patients, 25 caregivers of stroke patients, and 25 noncaregivers. Found that AD caregiving group was more psychologically distressed than stroke group, and both caregiving groups were more psychologically distressed than controls. Found no differences…

End-of-Life Caregiver's Perspectives on Their Role: Generative Caregiving

ERIC Educational Resources Information Center

Phillips, Linda R.; Reed, Pamela G.

2010-01-01

Purpose: To describe caregivers' constructions of their caregiving role in providing care to elders they knew were dying from life-limiting illnesses. Design and Methods: Study involved in-depth interviews with 27 family caregivers. Data were analyzed using constant comparative analysis. Results: Four categories were identified: centering life on…

Perceiving Elder Caregivers: Effects of Gender, Employment and Caregiving Hours.

ERIC Educational Resources Information Center

Etaugh, Claire; Laumann, Lisa

Family care of elderly parents is increasing. The typical caregiver is a married middle-aged daughter who often has additional employment and family responsibilities. Not surprisingly, female caregivers of the elderly report more stress than male caregivers. This study examined perceptions of the nurturance, professional competence and stresses of…

Willingness to express emotions to caregiving spouses.

PubMed

Monin, Joan K; Martire, Lynn M; Schulz, Richard; Clark, Margaret S

2009-02-01

This study examined the association between care-recipients' willingness to express emotions to spousal caregivers and caregiver's well-being and support behaviors. Using self-report measures in the context of a larger study, 262 care-recipients with osteoarthritis reported on their willingness to express emotions to caregivers, and caregivers reported on their stress and insensitive responding to care-recipients. Results revealed that care-recipients' willingness to express happiness was associated with less insensitive caregiver responding, and willingness to express interpersonal emotions (e.g., compassion, guilt) was associated with less caregiving stress. There were also gender differences, such that caregiving wives, in particular, benefited from their husband's willingness to express vulnerable (e.g., anxiety, sadness) and interpersonal emotions. (c) 2009 APA, all rights reserved

Integrative model of caregiving: how macro and micro factors affect caregivers of adults with severe and persistent mental illness.

PubMed

Mak, Winnie W S

2005-01-01

The study tested an integrative model of caregiving by examining the effects of sociocultural characteristics, interpersonal relations, mental health service structure, consumers' symptoms, objective burden, and evaluation of service systems on the subjective experiences of caregivers. The sample consisted of 428 caregivers of adults with severe and persistent mental illness. Results from multiple regression analyses indicated that ethnicity was the most significant sociocultural factor on caregivers' worry, personal growth, and benefits. Caregivers enrolled in managed care plans worried more about their consumers' welfare and felt less gratified by their experiences than their counterparts from fee-for-service plans. Implications to and partnerships among caregivers and mental health service systems were discussed.

Assessment of Caregiver Inventory for Rett Syndrome

PubMed Central

Lane, Jane B.; Salter, Amber R.; Jones, Nancy E.; Cutter, Gary; Horrigan, Joseph; Skinner, Steve A.; Kaufmann, Walter E.; Glaze, Daniel G.; Neul, Jeffrey L.; Percy, Alan K.

2017-01-01

Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi-square or Fisher’s exact test for categorical variables and t-tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for Physical Burden, Emotional Burden, and Social Burden. Internal reliability was high (Cronbach’s alpha: 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder. PMID:28132121

The Challenges of Developing a Participatory Arts Intervention for Caregivers of Persons with Dementia

PubMed Central

Gammonley, Denise; Hanna Powell, Gay; Wan, Thomas T

2017-01-01

Objective: We describe the development and challenges in implementing a web-based participatory art intervention specifically designed for caregivers of persons with dementia to use at home with their loved one.   Method: An interprofessional team, including an experienced national panel of artists, developed a participatory arts toolkit consisting of seven web-based modules involving a combination of music, singing, dancing, poetry, and painting. Participants completed a survey of demographics, caregiver needs, and caregiver burden.  Results: Thirty caregivers with high caregiver needs and a high caregiver burden volunteered to pilot the intervention. Difficulties with caregiver recruitment and compliance with lesson plans were noted. Caregivers provided positive and negative qualitative feedback.   Discussion: The challenges and possible solutions to the problems identified in the implementation and assessment of this participatory arts intervention will provide important insights for future studies linking the arts and dementia care.    PMID:28503390

Family caregiving to those with dementia in rural Alabama: racial similarities and differences.

PubMed

Kosberg, Jordan I; Kaufman, Allan V; Burgio, Louis D; Leeper, James D; Sun, Fei

2007-02-01

This study explored differences and similarities in the experiences of African American and White family caregivers of dementia patients living in rural Alabama. This cross-sectional survey used a caregiving stress model to investigate the interrelationships between caregiving burden, mediators, and outcomes. Random-digit-dialing telephone interviews were used to obtain data on a probability sample of 74 non-Hispanic White and 67 African American caregivers. White caregivers were more likely to be married and older, used acceptance and humor as coping styles, and had fewer financial problems. African American caregivers gave more hours of care, used religion and denial as coping styles, and were less burdened. The authors have developed a methodology for obtaining a representative sample of African American and White rural caregivers. Further investigations are needed of the interactions between urban/rural location and ethnic/racial backgrounds of dementia caregivers for heuristic and applied reasons.

Mexican American intergenerational caregiving model.

PubMed

Escandón, Socorro

2006-08-01

This study employed grounded theory to formulate a conceptual model of intergenerational caregiving among Mexican American families. The sample consisted of 10 Mexican American caregivers of various generations older than 21 who provided at least one intermittent service (without pay at least once a month) to an elder, related through consanguinal or acquired kinship ties. The inductively generated theory of role acceptance is composed of four phases: (a) introduction--early caregiving experiences, (b) role reconciliation, (c) role imprint, and (d) providing or projecting care. This model can be used to study varied generations of Mexican American caregivers. It also provides a framework for comparison with other groups of caregivers. The results can help in designing nursing interventions to support caregivers based on understanding the issues, to create and design systems that address the varying and ever-changing needs of informal caregivers, and to assist in the formulation of policy that supports Mexican American caregivers.

OC29 - Caregiver burden in childhood asthma.

PubMed

Ekim, Ayfer

2016-05-09

Theme: Parenting/parenthood. As delivering care is an inherent part of becoming parents, providing high-level care to the child with health problems might be a burden for the caregiver. This systematic review investigated the effects of caregiver burden of parents who are primarily responsible for the caring of children with asthma. PubMed, CINAHL, Web of Science and Scopus databases were searched for the studies published between 2000-2015. Key search terms used were 'caregiver', 'burden, 'childhood asthma' and 'parent'. A total of 23 studies were examined for this review. Providing care to the child with asthma affects parents as caregivers negatively. Caregivers of the children with asthma often experience anxiety, fear, disappointment, grief, physical distress and low quality of life as the outcomes of caregiving burden. It is absolutely crucial to determine caregiver burden risks and protective factors since wellness level of caregivers affect the asthma management practices and decisions.

Labor Market Work and Home Care's Unpaid Caregivers: A Systematic Review of Labor Force Participation Rates, Predictors of Labor Market Withdrawal, and Hours of Work

PubMed Central

Lilly, Meredith B; Laporte, Audrey; Coyte, Peter C

2007-01-01

As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for “intensive” caregivers and developing workplace policies for employed caregivers. PMID:18070333

The Challenges of Developing a Participatory Arts Intervention for Caregivers of Persons with Dementia.

PubMed

Golden, Adam; Gammonley, Denise; Hanna Powell, Gay; Wan, Thomas T

2017-04-11

We describe the development and challenges in implementing a web-based participatory art intervention specifically designed for caregivers of persons with dementia to use at home with their loved one.   Method: An interprofessional team, including an experienced national panel of artists, developed a participatory arts toolkit consisting of seven web-based modules involving a combination of music, singing, dancing, poetry, and painting. Participants completed a survey of demographics, caregiver needs, and caregiver burden.  Results: Thirty caregivers with high caregiver needs and a high caregiver burden volunteered to pilot the intervention. Difficulties with caregiver recruitment and compliance with lesson plans were noted. Caregivers provided positive and negative qualitative feedback.   Discussion: The challenges and possible solutions to the problems identified in the implementation and assessment of this participatory arts intervention will provide important insights for future studies linking the arts and dementia care.

Sources of Variability in Children’s Language Growth

PubMed Central

Huttenlocher, Janellen; Waterfall, Heidi; Vasilyeva, Marina; Vevea, Jack; Hedges, Larry V.

2010-01-01

The present longitudinal study examines the role of caregiver speech in language development, especially syntactic development, using 47 parent-child pairs of diverse SES background from 14 to 46 months. We assess the diversity (variety) of words and syntactic structures produced by caregivers and children. We use lagged correlations to examine language growth and its relation to caregiver speech. Results show substantial individual differences among children, and indicate that diversity of earlier caregiver speech significantly predicts corresponding diversity in later child speech. For vocabulary, earlier child speech also predicts later caregiver speech, suggesting mutual influence. However, for syntax, earlier child speech does not significantly predict later caregiver speech, suggesting a causal flow from caregiver to child. Finally, demographic factors, notably SES, are related to language growth, and are, at least partially, mediated by differences in caregiver speech, showing the pervasive influence of caregiver speech on language growth. PMID:20832781

"It's like we're grasping at anything": caregivers' education needs and preferred learning methods.

PubMed

Mastel-Smith, Beth; Stanley-Hermanns, Melinda

2012-07-01

In this qualitative descriptive study, we explored caregivers' educational needs and preferred methods of information delivery. Descriptions are based on five focus groups (N = 29) conducted with ethnically diverse, current and past family caregivers, including those who had previously attended a structured educational program. Themes arose from verbatim data transcriptions and coded themes. Four categories of educational needs were identified: (a) respite, (b) caregiving essentials, (c) self-care, and (d) the emotional aspects of caregiving. Advantages and disadvantages of learning methods are discussed, along with reasons for and outcomes of attending caregiver workshops. An informed caregiver model is proposed. Health care providers must assess educational needs and strive to provide appropriate information as dictated by the care recipient's condition and caregiver's expressed desires. Innovative methods of delivering information that are congruent with different caregiving circumstances and learning preferences must be developed and tested.

Family caregiving or caregiving alone: who helps the helper?

PubMed

Sims-Gould, Joanie; Martin-Matthews, Anne

2007-01-01

This study advances the understanding of family caregiving by examining the relationship between adult children caregivers and their helpers. Specifically, it focuses on examining "who helps whom" and extends analyses beyond the dyadic focus of caregiving in later life. The focus on helping and caregiving addresses the variety of contributions and responsibilities involving not only the caregiver who was the target respondent in this research, but also others identified as helpers in the provision of care. The data for this study are derived from the Work and Eldercare Research group of CARNET: The Canadian Aging Research Network. Secondary analysis of CARNET data focuses on data collected from 250 individuals with significant caregiving responsibilities for at least one older person. Findings extend Kahn & Antonucci's convoys of social support model (1981) and Cantor's model of social care (1991) by disentangling some of the dimensions of helping and caregiving, such as the distinction between direct and assistive help.

Coping Strategy and Caregiver Burden Among Caregivers of Patients With Dementia.

PubMed

Huang, Mei-Feng; Huang, Wen-Hui; Su, Yi-Ching; Hou, Shu-Ying; Chen, Hui-Mei; Yeh, Yi-Chun; Chen, Cheng-Sheng

2015-11-01

This study aims to examine whether coping strategies employed by caregivers are related to distinct symptoms of patients with dementia and to investigate the associations between burden and coping among caregivers of patients with dementia. A cross-sectional study design was used. A total of 57 caregivers of patients with dementia were enrolled. Coping strategies were assessed using the Ways of Coping Checklist, and burden was assessed using the Chinese version of Caregiver Burden Inventory. Correlations between coping and patients' behavior or memory problems were examined. Severities of behavior and memory problems were adjusted to examine the correlations between caregiver burden and coping strategies. The patients' disruptive behavior problems were associated with avoidance, and depression problems were associated with avoidance and wishful thinking. After adjusting for severity of behavior problems, coping strategies using avoidance were positively correlated with caregiver burden. Emotion-focused coping strategies are a marker of caregiver burden. © The Author(s) 2013.

Collective Care: Multiple Caregivers and Multiple Care Recipients in Mexican American Families.

PubMed

Evans, Bronwynne C; Coon, David W; Belyea, Michael J; Ume, Ebere

2017-07-01

Specific stressors associated with caregiving in Mexican American (MA) families are not well documented, yet caregiving issues are paramount because informal care for parents is central to their culture. Although MA families who band together to provide care for one member are not unique, the literature does not describe the phenomenon of collective caregiving, which may be widespread but unrecognized. This article describes these understudied families who are poorly served by contemporary health systems because their characteristics are unknown. Descriptive, multisite, longitudinal mixed-methods study of MA caregiving families. We identified three types of collective caregivers: those providing care for multiple family members simultaneously, those providing care successively to several family members, and/or those needing care themselves during their caregiving of others. Collective caregiving of MA elders warrants further investigation. Exploration of collective caregiving may provide a foundation for tailored family interventions.

Gender identity in informal care: impact on health in Spanish caregivers.

PubMed

del Río-Lozano, María; García-Calvente, María del Mar; Marcos-Marcos, Jorge; Entrena-Durán, Francisco; Maroto-Navarro, Gracia

2013-11-01

We examined the influence of gender identity on men's and women's perceptions of assuming the caregiver role to identify different coping strategies and the effects on caregiver health and quality of life. The study, performed in Andalusia, Spain, was based on a sociological analysis of the narratives produced during semistructured interviews with primary informal caregivers (16 men and 16 women) of different profiles. We observed a cultural assumption that women should assume the caregiver role and found that women shouldered the bulk of caregiving responsibilities and did not usually seek support. This might explain the high prevalence of chronic health disorders, stress, anxiety, depression, neglect of health, and social isolation we observed among women caregivers. Because the caregiver role was not socially imposed on men in our setting, men caregivers adopted a flexible attitude and tended to seek external support before their health and quality of life were seriously affected.

Experiences and concerns of family caregivers providing support to people with dementia: a cross-cultural perspective.

PubMed

Ivey, Susan L; Laditka, Sarah B; Price, Anna E; Tseng, Winston; Beard, Renée L; Liu, Rui; Fetterman, David; Wu, Bei; Logsdon, Rebecca G

2013-11-01

We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.

Korean American dementia caregivers' attitudes toward caregiving: the role of social network versus satisfaction with social support.

PubMed

Lee, Youjung; Choi, Sunha

2013-06-01

The purpose of this study was to explore how Korean American family caregivers view the services they offer to patients with dementia. It also investigated the roles of social networks and satisfaction with social support on attitudes toward caregiving. Social network, satisfaction with social support, demographic characteristics, caregiving-related stress factors, and cultural factors were examined. We used a convenience sample of 85 Korean American dementia caregivers. The results from hierarchical multiple regression models show that the level of satisfaction with social support significantly contributed to Korean American caregivers' attitudes toward working with patients with dementia, while no statistically significant associate was found for social network. Higher levels of satisfaction with social support were associated with greater positive attitudes toward caregiving among Korean American caregivers (b = 0.26, p = .024). The implications for mental health professionals and policy makers are discussed.

Education, Training, and Mentorship of Caregivers of Canadians Experiencing a Life-Limiting Illness.

PubMed

Williams, Allison M

2018-01-01

Research suggests that caregiver preparedness is essential to minimizing the negative impacts of caregiving. Not being prepared is associated with fear, anxiety, stress, and feelings of insufficiency/uncertainty specific to the caregiver role. To determine what resources are required to ensure adequate education, training, and mentorship for caregivers of Canadians experiencing a life-limiting illness. Informed by the Ispos Reid survey, the methods for this article involved a rapid literature review that addressed caregiver experiences, needs and issues as they related to health, quality of life, and well-being. Given the burden of care, caregiver education, training, and mentorship are suggested to be best met through the palliative navigator model, wherein the patient-caregiver dyad is recognized as an integrated unit of care. The palliative navigator approach is a key role in the education, training, and mentorship of caregivers.

Decision-making for destination therapy left ventricular assist devices: implications for caregivers.

PubMed

McIlvennan, Colleen K; Jones, Jacqueline; Allen, Larry A; Lindenfeld, JoAnn; Swetz, Keith M; Nowels, Carolyn; Matlock, Daniel D

2015-03-01

Implanting centers often require the identification of a dedicated caregiver before destination therapy left ventricular assist device (DT LVAD) implantation; however, the caregiver experience surrounding this difficult decision is relatively unexplored. From October 2012 through July 2013, we conducted semistructured, in-depth interviews with caregivers of patients considering DT LVAD. Data were analyzed using a mixed inductive and deductive approach. We interviewed 17 caregivers: 10 caregivers of patients living with DT LVAD, 6 caregivers of patients who had died with DT LVAD, and 1 caregiver of a patient who had declined DT LVAD. The themes identified, which could also be considered dialectical tensions, are broadly interpreted under 3 domains mapping to decision context, process, and outcome: (1) the stark decision context, with tension between hope and reality; (2) the challenging decision process, with tension between wanting loved ones to live and wanting to respect loved ones' wishes; and (3) the downstream decision outcome, with tension between gratitude and burden. Decision-making surrounding DT LVAD should incorporate decision support for patients and caregivers. This should include a focus on caregiver burden and the predictable tensions that caregivers experience. © 2015 American Heart Association, Inc.

Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program

PubMed Central

Phillips, Sara S.; Ragas, Daiva M.; Tom, Laura S.; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A.

2015-01-01

Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices. PMID:26607814

Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program.

PubMed

Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A

2016-06-01

Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.

[Discussion between informal and formal caregivers of community-dwelling older adults].

PubMed

Jacobs, M T; Broese van Groenou, M I; Deeg, D J H

2014-04-01

Current Dutch policy on long-term care is aimed at a stronger connection between formal home care and informal care. We examined if formal and informal caregivers of community-dwelling older adults discuss the care and whether this is related to characteristics of the older adult, the care network and the individual caregivers. Data are derived from 63 community-dwelling older adults, including their health, their perceived control of the care and their care network. In addition, 79 informal and 90 formal caregivers are interviewed on their motives and vision on caregiving. The 112 dyads between those formal and informal caregivers are the units of analysis in the current study. Bivariate analyses reveal that informal caregivers are more likely to discuss the care with formal caregivers when they are residing with the older adult, when they provide a lot of care and/or when they are strongly motivated to keep the older adult at home. This is particularly the case when the care demands are high. Characteristics of the formal caregivers were not important. In conclusion, discussion of care between non-resident informal caregivers and formal caregivers is not self-evident and requires more effort to be established.

Nutrition knowledge, attitudes, behaviours and the influencing factors among non-parent caregivers of rural left-behind children under 7 years old in China.

PubMed

Tan, Cai; Luo, Jiayou; Zong, Rong; Fu, Chuhui; Zhang, Lingli; Mou, Jinsong; Duan, Danhui

2010-10-01

To explore and compare nutrition knowledge, attitudes and behaviours (KAB) between non-parent and parent caregivers of children under 7 years old in Chinese rural areas, and to identify the factors influencing their nutrition KAB. Face-to-face interviews were carried out with 1691 non-parent caregivers and 1670 parent caregivers in the selected study areas; multivariate logistic regression models were used to identify the factors influencing nutrition KAB in caregivers. The awareness rate of nutrition knowledge, the rate of positive attitudes and the rate of optimal behaviours in non-parent caregivers (52.2 %, 56.9 % and 37.7 %, respectively) were significantly lower than in the parent group (63.8 %, 62.1 % and 42.8 %, respectively). Multivariate logistic regression modelling showed that caregivers' family income and care will, and children's age and gender, were associated with caregivers' nutrition KAB after controlling the possible confounding variables (caregivers' age, gender, education and occupation). Non-parent caregivers had relatively poor nutrition KAB. Extra efforts and targeted education programmes aimed to improve rural non-parent caregivers' nutrition KAB are wanted and need to be emphasized.

The emotional health and well-being of Canadians who care for persons with mental health or addictions problems.

PubMed

Slaunwhite, Amanda K; Ronis, Scott T; Sun, Yuewen; Peters, Paul A

2017-05-01

The purpose of this project was to examine the emotional health and well-being of Canadian caregivers of persons with significant mental health or addictions problems. We assessed the emotional health of caregivers by care-receiver condition type (i.e. mental health or addictions vs. physical or other health problems), levels of caregiver stress and methods particularly for reducing stress among caregivers of persons with mental health or addictions disorders. Weighted cross-sectional data from the 2012 General Social Survey (Caregiving and Care Receiving) were modelled using weighted descriptive and logistic regression analyses to examine levels of stress and the emotional health and well-being of caregivers by care-receiver condition type. Caregivers of persons with mental health or addictions problems were more likely to report that caregiving was very stressful and that they felt depressed, tired, worried or anxious, overwhelmed; lonely or isolated; short-tempered or irritable; and resentful because of their caregiving responsibilities. The results of this study suggest that mental health and addictions caregivers may experience disparate stressors and require varying services and supports relative to caregivers of persons with physical or other health conditions. © 2016 John Wiley & Sons Ltd.

Caregiver burden, productivity loss, and indirect costs associated with caring for patients with poststroke spasticity

PubMed Central

Ganapathy, Vaidyanathan; Graham, Glenn D; DiBonaventura, Marco D; Gillard, Patrick J; Goren, Amir; Zorowitz, Richard D

2015-01-01

Objective Many stroke survivors experience poststroke spasticity and the related inability to perform basic activities, which necessitates patient management and treatment, and exerts a considerable burden on the informal caregiver. The current study aims to estimate burden, productivity loss, and indirect costs for caregivers of stroke survivors with spasticity. Methods Internet survey data were collected from 153 caregivers of stroke survivors with spasticity including caregiving time and difficulty (Oberst Caregiver Burden Scale), Work Productivity and Activity Impairment measures, and caregiver and patient characteristics. Fractional logit models examined predictors of work-related restriction, and work losses were monetized (2012 median US wages). Results Mean Oberst Caregiver Burden Scale time and difficulty scores were 46.1 and 32.4, respectively. Employed caregivers (n=71) had overall work restriction (32%), absenteeism (9%), and presenteeism (27%). Caregiver characteristics, lack of nursing home coverage, and stroke survivors’ disability predicted all work restriction outcomes. The mean total lost-productivity cost per employed caregiver was US$835 per month (>$10,000 per year; 72% attributable to presenteeism). Conclusion These findings demonstrate the substantial burden of caring for stroke survivors with spasticity illustrating the societal and economic impact of stroke that extends beyond the stroke survivor. PMID:26609225

Cancer caregivers' perceptions of an exercise and nutrition program.

PubMed

Anton, Philip M; Partridge, Julie A; Morrissy, Margaret J

2013-03-01

Little research has addressed exercise and nutrition-based interventions for cancer caregivers. This study explored cancer caregivers' perceptions of participating in a structured exercise and nutrition program alongside cancer survivors for whom they provided care. In-depth, semi-structured interviews were conducted by one interviewer with 12 cancer caregivers about their experiences participating in a structured, 12-week exercise and nutrition program designed for cancer survivors and caregivers to complete concurrently. Interviews were conducted until data saturation was reached. Inductive content analysis from individual interviews indicated three separate, but interrelated, themes: (1) the program was a positive mechanism through which caregivers shared and supported the cancer journey concurrently with survivors, (2) the program led to perceived physical and psychological benefits for both caregivers and survivors, and (3) participants perceived that participation in the program led to feeling increased social support in their caregiving duties. Findings from this study suggest that participating in an exercise- and nutrition-based intervention is viewed positively by caregivers and that the outcomes are seen as beneficial to both caregivers and survivors. Interventions that address the health needs of both members of the caregiver-survivor dyad should continue to be encouraged by allied health professionals.

Family Caregiver's Perception of Alzheimer's disease and caregiving in Chinese culture.

PubMed

Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali

2015-01-01

This study examined the perception of Alzheimer's disease (AD) and caregiving among family caregivers of individuals with mild cognitive impairment (MCI) and AD in China. In-depth semistructured interviews were conducted with 46 family caregivers of individuals with cognitive impairment in 2009 in Wuhan and Beijing, China. Participants included 38 spouses, 7 adult children, and 1 sibling, aged between 41 and 85 years old. The findings showed that all family caregivers thought the Chinese terminology of AD laonian chidai, brought discrimination to individuals with cognitive impairment. Caregivers of individuals with AD experienced burden and desired an increase of formal services. Traditional beliefs of respecting elders and caring for extended family members were held among family caregivers of individuals with cognitive impairment, and there was nearly no difference found between caregivers of AD and those of MCI. It implied that traditional culture provided positive influences on caring for elders with cognitive impairment. An alternative term for MCI may contribute to further reducing the discrimination brought by the old Chinese terminology of AD laonian chidai. Development of formal services for elders with cognitive impairment may contribute to reducing caregivers' worries about future caregiving.

Hidden Heroes

PubMed Central

Ramchand, Rajeev; Tanielian, Terri; Fisher, Michael P.; Vaughan, Christine Anne; Trail, Thomas E.; Epley, Caroline; Voorhies, Phoenix; Robbins, Michael; Robinson, Eric; Ghosh-Dastidar, Bonnie

2014-01-01

Abstract While much has been written about the role of caregiving for the elderly and chronically ill and for children with special needs, little is known about “military caregivers”—the population of those who care for wounded, ill, and injured military personnel and veterans. These caregivers play an essential role in caring for injured or wounded service members and veterans. This enables those for whom they are caring to live better quality lives, and can result in faster and improved rehabilitation and recovery. Yet playing this role can impose a substantial physical, emotional, and financial toll on caregivers. This article distills a longer report, Hidden Heroes: America's Military Caregivers, which describes the results of a study designed to describe the magnitude of military caregiving in the United States today, as well as to identify gaps in the array of programs, policies, and initiatives designed to support military caregivers. Improving military caregivers' well-being and ensuring their continued ability to provide care will require multifaceted approaches to reducing the current burdens caregiving may impose, and bolstering their ability to serve as caregivers more effectively. Given the systematic differences among military caregiver groups, it is also important that tailored approaches meet the unique needs and characteristics of post-9/11 caregivers. PMID:28083343

Sleep in caregivers: what we know and what we need to learn.

PubMed

McCurry, Susan M; Song, Yeonsu; Martin, Jennifer L

2015-11-01

The number of informal caregivers providing assistance to adults is increasing commensurate with our aging society. Sleep disturbances are prevalent in caregivers and associated with negative physical, medical, and functional outcomes. Here, we describe the predisposing, precipitating, and perpetuating factors contributing to the development of sleep problems in caregivers, and discuss three understudied caregiving populations that have clinical importance and unique circumstances influencing sleep quality and health. There is clear evidence supporting the interaction between sleep loss, caregiving stress, and vulnerability to chronic disease. Telehealth and telemedicine sleep interventions for caregivers combined with assistive technologies targeting care-receivers have potential to be more individualized, affordable, and widely accessible than traditional in-person insomnia treatment approaches. Limited data exist describing the etiology and treatment of sleep problems in caregivers of veterans, medical patients newly discharged from the hospital, and developmentally disabled adults. There is a growing literature describing the general determinants of sleep disturbances in caregivers, the health consequences of these disturbances, and intervention strategies for treating them. Identifying effective sleep treatments suited to more specialized caregiving situations and increasing intervention access will help caregivers continue to provide quality care while protecting their own health and well-being.

Barriers to Care-Seeking for Children’s Oral Health Among Low-Income Caregivers

PubMed Central

Kelly, Susan E.; Binkley, Catherine J.; Neace, William P.; Gale, Bruce S.

2005-01-01

Objectives. We identified psychosocial, structural, and cultural barriers to seeking dental care among nonutilizing caregivers of Medicaid-enrolled children. Methods. We used Medicaid utilization records to identify utilizing and nonutilizing African American and White caregivers of Medicaid-enrolled children in Jefferson County, Kentucky. We conducted 8 focus groups (N=76) with a stratified random sample of responding caregivers; transcripts were qualitatively analyzed. Results. Psychosocial factors associated with utilization included oral health beliefs, norms of caregiver responsibility, and positive caregiver dental experiences. Utilizing groups reported higher education; health beliefs included identifying oral health with overall health and professional preventive dental care with caregiver responsibility for children’s overall health. These beliefs may mediate shared structural barriers, including transportation, school absence policies, discriminatory treatment, and difficulty locating providers who accept Medicaid. Expectation of poor oral health among some low-income caregivers was among factors identified with nonutilization. Conclusions. Disadvantaged caregivers reported multiple barriers to accessing dental care for their children. Providers, Medicaid administrators, and schools must coordinate steps to encourage caregiver-controlled dental care, build trust, and link professional preventive dental care with caregiver responsibility for children’s overall health. PMID:16043666

Adult caregiving among American Indians: the role of cultural factors.

PubMed

Goins, R Turner; Spencer, S Melinda; McGuire, Lisa C; Goldberg, Jack; Wen, Yang; Henderson, Jeffrey A

2011-06-01

With a sample of American Indian adults, we estimated the prevalence of adult caregiving, assessed the demographic and cultural profile of caregivers, and examined the association between cultural factors and being a caregiver. This is the first such study conducted with American Indians. Data came from a cross-sectional study of 5,207 American Indian adults residing on 2 closely related Lakota Sioux reservations in the Northern Plains and one American Indian community in the Southwest. Cultural factors included measures of cultural identity and traditional healing practices. Seventeen percent of our sample reported being caregivers. In both the Northern Plains and Southwest, caregiving was positively correlated with younger age, being a woman, larger household size, attending and participating in Native events, and endorsement of traditional healing practices. In both regions, attendance and participation in Native events and engagement in traditional healing practices were associated with increased odds of caregiving after adjusting for covariates. Only in the Northern Plains did we find that speaking some Native language at home was associated with increased odds of being a caregiver. Examination of interaction terms indicated some sex differences in the association between cultural factors and caregiving in the Northern Plains but not in the Southwest. Our findings indicate that greater cultural identity and engagement in traditional healing practices are related to caregiving in American Indian populations. Caregiving research, intervention efforts, and caregiving programs and services in Native communities should pay special attention to the dynamics of culture and caregiving.

Study on the impact of caregivers in an Italian high specialization hospital: presence, costs and nurse's perception.

PubMed

Quattrin, Rosanna; Artico, Carlo; Farneti, Federico; Panariti, Mateo; Palese, Alvisa; Brusaferro, Silvio

2009-06-01

The study analysed two key questions: (i) the prevalence of informal caregiving in medical and surgical wards of a high specialization hospital; (ii) the reasonable cost for the structure that would have to pay to replace informal caregiving? The study was conducted in June 2006 as a prevalence survey, using a questionnaire administered to informal caregivers and nurses working in medical and surgical wards of a high specialization hospital by ad hoc trained personnel. Questionnaire consisted in three sections: the first focused on patient's characteristics, the second on caregivers and the third on nurses' perception on caregiving phenomenon. One hundred and twenty-four eligible caregivers were identified. During the study patients admitted to hospital medical and surgery wards were 520. Among these 16.5% (86/520) was assisted by one or more caregivers. Caregivers' response rate was 69.4% (86/124), corresponding to 66 patients. This study yielded an average of 455.9 minutes per day (SD = 370.2; range = 120-1440) or 52.9 hours per week. Caregiver's presence was recognized in 88.9% (56/63) of patients. Despite the societal perspective, the costs and effects of informal caregiving to the informal caregiver are often ignored in economic evaluation. The costs of informal care are an important extent related to time inputs by relatives and friends of the care recipients. Our approach has been to monetize the informal activity care contribution of family members and/or caregivers.

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options.

PubMed

Phillips, Sara S; Ragas, Daiva M; Hajjar, Nadia; Tom, Laura S; Dong, XinQi; Simon, Melissa A

2016-01-01

The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N=55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty-six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty-two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Factors associated with family caregiver dissatisfaction with acute hospital care of older cognitively impaired relatives.

PubMed

Whittamore, Kathy H; Goldberg, Sarah E; Bradshaw, Lucy E; Harwood, Rowan H

2014-12-01

To identify patient and caregiver characteristics associated with caregiver dissatisfaction with hospital care of cognitively impaired elderly adults. Secondary analysis of data from a randomized controlled trial. An 1,800-bed general hospital in England providing the only emergency medical services in its area. Cognitively impaired individuals aged 65 and older randomly assigned to a specialist unit or standard geriatric or internal medical wards (N = 600) and related caregivers (N = 488). Patient and caregiver health status was measured at baseline, including delirium, cognitive impairment, behavioral and psychological symptoms, activities of daily living, and caregiver strain. Caregiver satisfaction with quality of care was ascertained after hospital discharge or death. Four hundred sixty-two caregivers completed satisfaction questionnaires. Regardless of assignment, 54% of caregivers were dissatisfied with some aspects of care, but overall 87% were satisfied with care. The main areas of dissatisfaction were communication, discharge planning, and medical management. Dissatisfaction was associated with high levels of patient behavioral and psychological symptoms on admission, caregiver strain and poor psychological well-being at admission, a diagnosis of delirium, and the relationship between the caregiver and the patient. There was less dissatisfaction from caregivers of patients managed on the specialist Medical and Mental Health Unit than those on standard wards, after controlling for multiple factors. Dissatisfaction was associated with patient behavioral and psychological symptoms and caregiver strain but was not immutable to efforts to improve care. © 2014, Copyright the Authors Journal compilation © 2014, The American Geriatrics Society.

Feelings of burden among family caregivers of people with spinal cord injury in Turkey.

PubMed

Secinti, E; Yavuz, H M; Selcuk, B

2017-08-01

The study was designed as a cross-sectional survey. The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Turkey. One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Caregiver burden was significantly related to caregivers' feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers' age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, our findings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.

Exploring Factors that Influence Informal Caregiving in Medication Management for Home Hospice Patients

PubMed Central

Berman, Rebecca; Halpern, Leslie; Pickard, A. Simon; Schrauf, Robert; Witt, Whitney

2010-01-01

Abstract Objective To explore factors that influence how informal caregivers manage medications as part of caring for hospice patients. Methods : Semistructured, open-ended interviews were conducted with 23 informal caregivers and 22 hospice providers from 4 hospice programs in the Chicago metropolitan areas. Qualitative analysis was conducted consistent with the grounded theory approach. Results : In general, informal caregivers and hospice providers identified similar key factors that facilitated or impeded caregivers' process in managing medications. Caregivers' life experience and self-confidence were considered assets that facilitated medication management. Limitations impeding the process included caregivers' negative emotional states, cognitive and physical impairments, low literacy, other competing responsibilities, as well as patients' negative emotional states and complex medication needs. Furthermore, the social context of medication management emerged as a salient theme: caregivers' good interpersonal relations with patients facilitated medication management, whereas poor communication/relations among caregivers within a support network impeded the process. While both study groups discussed the positive attributes of good caregiver–patient relations and support from multiple caregivers, hospice providers were cautious about the potential adverse influence of close relations with patients on caregivers' decision making about medications and discussed poor communication/relations among informal and privately hired caregivers that often resulted from family conflicts and/or a lack of long-standing leadership. Conclusion Our findings suggest additional intervention points, beyond knowledge and skill building, that could be addressed to support caregivers in executing medication responsibilities at home for hospice patients. PMID:20836633

Caregiving styles: a cognitive and behavioral typology associated with dementia family caregiving.

PubMed

Corcoran, Mary A

2011-08-01

An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking-action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver-care recipient (CR) dyads was videotaped during typical interactions. Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver-CR dyads.

Seeking Medical Information Using Mobile Apps and the Internet: Are Family Caregivers Different from the General Public?

PubMed

Kim, Hyunmin; Paige Powell, M; Bhuyan, Soumitra S; Bhuyan, Soumitra Sudip

2017-03-01

Family caregivers play an important role to care cancer patients since they exchange medical information with health care providers. However, relatively little is known about how family caregivers seek medical information using mobile apps and the Internet. We examined factors associated with medical information seeking by using mobile apps and the Internet among family caregivers and the general public using data from the 2014 Health Information National Trends Survey 4 Cycle 1. The study sample consisted of 2425 family caregivers and 1252 non-family caregivers (the general public). Guided by Comprehensive Model of Information Seeking (CMIS), we examined related factors' impact on two outcome variables for medical information seeking: mobile apps use and Internet use with multivariate logistic regression analyses. We found that online medical information seeking is different between family caregivers and the general public. Overall, the use of the Internet for medical information seeking is more common among family caregivers, while the use of mobile apps is less common among family caregivers compared with the general public. Married family caregivers were less likely to use mobile apps, while family caregivers who would trust cancer information were more likely to use the Internet for medical information seeking as compared to the general public. Medical information seeking behavior among family caregivers can be an important predictor of both their health and the health of their cancer patients. Future research should explore the low usage of mobile health applications among family caregiver population.

Exploring youth and caregiver preferences for asthma education video content.

PubMed

Geryk, Lorie L; Arrindell, Courtney C; Sage, Adam J; Blalock, Susan J; Reuland, Daniel S; Coyne-Beasley, Tamera; Lee, Charles; Sleath, Betsy L; Carpenter, Delesha M

2016-01-01

This study examines (1) whether youth and their caregivers have different preferences for asthma education video topics and (2) if education topic preferences vary by youth and caregiver sociodemographic characteristics. Youth (n = 83) ages 7-17 years with persistent asthma and their caregivers were recruited at two pediatric practices in North Carolina. Sociodemographic information and youth and caregiver preferences for nine asthma video education topics were collected during in-person interviews. Bonferroni-corrected Chi-square or McNemar tests (α = 0.0056) were used to compare youth and caregivers differences in topic preferences and topic preferences by youth and caregiver sociodemographic characteristics, including gender, race, ethnicity, and age. Youth were primarily male (52%) and from low-income families (74%; caregiver annual income less than $30,000) and many were Hispanic (45%). Youth and parents expressed the most interest in the following two topics: "how to deal with triggers" (90% and 95%, respectively) and "how to keep asthma under control" (87% and 96%, respectively). Caregivers and children were discordant for two topics: "the difference between a rescue and controller medicine" and "how to [help your child] talk to your [his/her] friends about asthma." No differences were found between youth and caregiver sociodemographic characteristics and video topic preferences. Youth with persistent asthma and their caregivers differed in their asthma education topic preferences, but preferences did not vary by caregiver or youth sociodemographic characteristics. Studies examining the effectiveness of interventions tailored to differences in educational preferences of youth with asthma and their caregivers are needed.

Family Caregiver Contribution to Self-care of Heart Failure: An Application of the Information-Motivation-Behavioral Skills Model.

PubMed

Chen, Yuxia; Zou, Huijing; Zhang, Yanting; Fang, Wenjie; Fan, Xiuzhen

Adherence to self-care behaviors improves outcomes of patients with heart failure (HF). Caregivers play an important role in contributing to self-care. We aimed to explore the relationships among HF knowledge, perceived control, social support, and family caregiver contribution to self-care of HF, based on the Information-Motivation-Behavioral Skills Model. Two hundred forty-seven dyads of eligible patients with HF and family caregivers were recruited from a general hospital in China. Structural equation modeling was used to analyze the data obtained with the Caregiver Contribution to Self-care of Heart Failure Index, the Heart Failure Knowledge Test, the Control Attitudes Scale, and the Social Support Rating Scale. In this model, caregiver contribution to self-care maintenance was positively affected by perceived control (β = .148, P = .015) and caregiver confidence in contribution to self-care (β = .293, P < .001). Caregiver contribution to self-care management was positively affected by HF knowledge (β = .270, P < .001), perceived control (β = .140, P = .007), social support (β = .123, P = .019), caregiver confidence in contribution to self-care (β = .328, P < .001), and caregiver contribution to self-care maintenance (β = .148, P = .006). Caregiver confidence in contribution to self-care was positively affected by HF knowledge (β = .334, P < .001). Heart failure knowledge, perceived control, and social support facilitated family caregiver contribution to self-care of HF. Targeted interventions that consider these variables may effectively improve family caregiver contributions to self-care.

A systematic review of Indigenous caregiver functioning and interventions.

PubMed

Hokanson, Lesli; Quinn, Michael Gerhardt; Schüz, Natalie; de Salas, Kristy; Scott, Jenn

2018-03-21

There is a global increase in chronic, degenerative illnesses that require long-term intervention and support as a result of the aging population. The majority of support needs are met by informal family caregivers. While there have been three decades of research focusing on caregivers in general, the extent to which research has focused on Indigenous caregivers is unclear. Worldwide, Indigenous peoples face severe economic and health disadvantages that may make them even more vulnerable to the negative aspects of informal caregiving. The current systematic review aimed to synthesize the extant literature on Indigenous caregiver functioning and the interventions that are efficacious in alleviating Indigenous caregiver distress. Systematic review Inclusion criteria were peer-reviewed quantitative studies examining Indigenous caregiver functioning or evaluating Indigenous caregiver interventions. 1172 unique records were located in the final search undertaken; only 7 articles, representing 6 unique studies, met the full inclusion criteria. Most studies contained numerous methodological weaknesses that compromised the reliability and validity of findings. Available studies suggest poor health and high burden among Indigenous relative to non-Indigenous caregivers. However, high levels of positive aspects of caregiving were reported in one study. A single intervention study suggests that poor health outcomes among Indigenous caregivers can be alleviated, though the quality and focus of this study was sub-optimal. Overall, there is very little quality evidence around Indigenous caregiver functioning. Future research in this area would benefit from greater adherence to the standards of research that contribute to a strong and reliable evidence base.

The crucial role of the micro caregiving environment: Factors associated with attachment styles in alternative care in Chile.

PubMed

Garcia Quiroga, Manuela; Hamilton-Giachritsis, Catherine

2017-08-01

The distribution of attachment styles has been shown to differ between groups of children living with their parents and children placed in alternative care (AC), defined as residential or foster. However, this is the first study in Latin America to explore possible factors affecting the quality of attachment in children living in both residential and foster care. Two groups of children (N=57) were compared: one group living in Residential Homes (RC) and the other in Foster Care (FC) in Chile. Children's, caregivers' and structural factors (e.g., child: caregiver ratios) and their links with attachment styles were investigated. The micro caregiving environment (i.e., the specific individual child caregiver relationship), especially the caregivers' engagement, sensitivity, disciplinary control and affection, as well as some structural factors (i.e., child: caregiver ratios), were linked to attachment security in children. Specifically, better emotional caregiving and lower child-caregiver ratios were associated with higher rates of secure attachment. The association between quality of care (as measured by the HOME inventory) and attachment styles seems to be influenced by caregiver relationships (as measured by CCSERSS). Caregiver relationship factors (i.e., affection, engagement and sensitivity) directly impact the quality of the attachment children establish with them while living in AC. However, the relationships that caregivers establish with children under their care can be facilitated by good quality structural factors, particularly child-caregiver ratios. Copyright © 2017 Elsevier Ltd. All rights reserved.

Prevalence of depression and its associated factors among primary caregivers of patients with severe mental illness in southwest, Ethiopia.

PubMed

Derajew, Habtamu; Tolessa, Daniel; Feyissa, Garumma Tolu; Addisu, Fikir; Soboka, Matiwos

2017-03-09

Depression is a serious mental illness that affects patients' treatment outcome and caregiver's day to day life. The prevalence of depression among caregivers of patients with severe mental illness is greater than the general population. Little is known about depression among primary caregivers of patients with severe mental illness in Ethiopia. This study is aimed at assessing prevalence of depression and associated factors among primary caregivers of patients with mental illness. A cross-sectional study was conducted among primary caregivers of patients with severe mental illness in Jimma University Teaching Hospital. Patient health questionnaire (PHQ-9) was used to assess depression. A multidimensional scale of perceived social support (MSPSS) was used to assess perceived social support; Cut down, Annoyed, Guilty, Eye opener (CAGE) scale was used to assess alcohol use disorder. After conducting descriptive analyses, logistic regression analysis was finally used for bivariate and multivariable analysis. The overall prevalence of depression among primary caregivers of patients with mental illness was 12 (19%). Out of those caregivers with depressions, 11.3, 3.5 and 4.2% had moderate, moderately severe and severe types of depression respectively. The prevalence of depression among female primary caregivers was 25% (n = 40). Being single (aOR 2.62, 95% CI = 1.07, 6.41), giving care more than six hours per day (aOR 3.75, 95% CI = 1.51, 9.33) and caring for a patient who had more than once episodes of suicidal attempts (aOR 1.48, 95% CI = 1.07, 3.42) were positively associated with depression among caregivers of patients with mental illness. We found that the prevalence of depression among primary caregivers was high. Depression among caregivers was associated with giving care more than six hours per day and caring for a patient who had two or more episodes of suicidal attempts. The prevalence of depression among female caregivers was higher than that of the male caregivers. Therefore, special focus should be given to primary caregivers spending long hours for providing care, those with low perceived social support; caregivers of patients with suicidal ideation and female caregivers.

Family caregiver mistreatment of the elderly: prevalence of risk and associated factors.

PubMed

Orfila, Francesc; Coma-Solé, Montserrat; Cabanas, Marta; Cegri-Lombardo, Francisco; Moleras-Serra, Anna; Pujol-Ribera, Enriqueta

2018-01-22

The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden. Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable. Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4). Prevalence of risk of abuse is high among family caregivers. Our study has found risk factors in family caregivers that are preventable to an extent, namely: anxiety and feelings of burden. It is essential to become aware of these risk factors and their causes to intervene and help primary as well secondary prevention.

In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

PubMed

Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza

2016-09-23

Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and describe diverse cognitive, functional and behavioral symptoms that lead to dementia, and recognize the benefits of early detection in accessing information regarding multi-modality management and care; 2.) Improved methods are needed for PCPs to detect and manage cognitive and behavioral changes, as well as mechanisms that facilitate the busy PCP, either directly or via referral, to provide caregiver information, education, support, and services. The critical relationship between caregivers and PCPs should not be circumvented but should be facilitated to provide more effective guidance regarding dementia caregiver needs.

Weight status, diet quality, perceived stress, and functional health of caregivers of children with autism spectrum disorder.

PubMed

Li, Xiaoyin Sara; Pinto-Martin, Jennifer A; Thompson, Aleda; Chittams, Jesse; Kral, Tanja V E

2018-01-01

Caring for children with autism spectrum disorder (ASD) can be highly demanding and can put significant strain on caregivers. To date, little is known about the extent to which caregivers of children with ASD experience increased levels of stress which may adversely affect health outcomes. The purpose of this secondary analysis was to compare caregivers of children with ASD and caregivers of typically developing children (TDC) in weight status, diet quality, perceived stress related to the parenting role, and functional health and well-being. Caregivers of 25 children with ASD and 30 TDC completed the 2005 Block Food Frequency Questionnaire, the 36-item Short Form of the Parenting Stress Index (PSI/SF), and the Short Form Health Survey (SF-36) and had their heights and weights measured during an onsite visit. Diet quality was assessed using the Healthy Eating Index (HEI)-2010 and its dietary components and conformance to the 2010 Dietary Guidelines for Americans. ASD caregivers did not differ significantly from TDC caregivers in body mass index or overweight/obesity prevalence (p ≥ .28), even when controlling for covariates. In univariate analyses, ASD caregivers consumed significantly fewer empty calories from solid fats, alcohol, and added sugars than TDC caregivers (p = .03), but they did not differ significantly in any other dietary outcomes including nutrient adequacy (p ≥ .10) and mean total HEI scores (p = .20). ASD caregivers, when compared to TDC caregivers, reported significantly greater parenting stress for the subscales difficult child and parent-child dysfunctional interaction as well as total stress (p < .001). In addition, 56% of ASD caregivers compared with 6.7% of TDC caregivers showed clinically significant levels of stress (p < .0001); a finding which remained statistically significant when controlling for covariates. ASD and TDC caregivers did not differ significantly in any SF-36 health domains related to functional health and well-being (p ≥ .10). Despite higher reported levels of stress, ASD caregivers did not differ significantly from TDC caregivers in diet- and health-related outcomes. Nurses and other health professionals should use comprehensive screening tools to assess overall caregiver stress and levels of resilience. © 2017 Wiley Periodicals, Inc.

Sex disparities in access to caregiving in Parkinson disease.

PubMed

Dahodwala, Nabila; Shah, Krunal; He, Ying; Wu, Samuel S; Schmidt, Peter; Cubillos, Fernando; Willis, Allison W

2018-01-02

To compare access to caregiving between men and women with Parkinson disease (PD). This was a cross-sectional and longitudinal study among participants with PD enrolled in the National Parkinson Foundation Parkinson's Outcomes Project from 2009 to 2014 at 21 international sites. The primary outcome measures were presence of a caregiver at the baseline visit, caregiver burden as measured by the Multidimensional Caregiver Strain Index (MCSI) at baseline, and time to first paid caregiver. A total of 7,209 participants (63% men, 37% women) with PD were evaluated. Men had a mean age of 66.0 (SD 9.8) years, and women had a mean age of 66.9 (SD 9.7) years. More men than women had a caregiver (88.4% vs 79.4%, p < 0.0001). Caregivers of men reported greater strain than those of women (MCSI score 19.9 vs 16.4, p < 0.0001). These differences persisted after controlling for age, disease stage, number of comorbidities, cognitive and mobility measures, and health-related quality of life. In addition, the odds of caregiver accompaniment at baseline visit were lower for women compared to men (odds ratio 0.76, 95% confidence interval [CI] 0.67-0.86), and women had a faster rate to using a paid caregiver than men (hazard ratio 1.76, 95% CI 1.35-2.28) after controlling for potential confounders. Informal caregiving resources are lower for women than men with PD, despite the finding that their caregivers report less strain than those of men. In addition, women are more likely to use formal, paid caregivers. Strategies to improve access to caregiving, particularly for women, are needed. Copyright © 2017 American Academy of Neurology.

Stroke management: Informal caregivers' burdens and strians of caring for stroke survivors.

PubMed

Gbiri, Caleb Ademola; Olawale, Olajide Ayinla; Isaac, Sarah Oghenekewe

2015-04-01

Stroke survivors live with varied degrees of disabilities and cares are provided largely by the informal caregivers. This study investigated informal caregivers' burden and strains of caring for stroke patients. This study involved 157 (81 males and 76 females) informal caregivers of stroke survivors receiving care in all secondary and tertiary health institutions with physiotherapy services in Lagos State, Nigeria. Information was collected through self-administered questionnaire during clinic-hours. Data was analyzed using Spearman's Rank Correlation Coefficient. The patients' age ranged between 20 and 79 (mean=59.6 ± 14.6 years). Sixty-one had haemorrhagic stroke while 96 had ischaemic stroke. The informal caregivers' age was 39.2 ± 12.8 years (range: 17-36 years). More (60.8%) participants reported moderate objective while 79.2% had mild subjective burdens. The following factors significantly increased (P<0.05) the level of burden and strains experienced by the informal caregivers: closer intimacy with the stroke survivors, fewer number of caregivers for the stroke patient, longer duration since the onset of stroke and more hours of caregiving per day. Caregiving had negative significant influence (P<0.05) on the social, emotional, health and financial well-beings of the informal caregivers. Caring for stroke survivors put social, emotional, health and financial burdens and strains on the informal caregivers. These burdens and strains increase with duration of stroke, intimacy, smaller number of caregivers and length of daily caregiving. Therefore, informal caregivers should be involved in the rehabilitation plan for stroke patients and their well-being should also be given adequate attention. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

Evaluation of chronic stress indicators in geriatric and oncologic caregivers: a cross-sectional study.

PubMed

Aguiló, Sira; García, Esther; Arza, Adriana; Garzón-Rey, Jorge M; Aguiló, Jordi

2018-01-01

Caregiving induces chronic stress with physical and psychological impact on informal caregivers health. Therefore, subjective and objective indicators are needed for the early diagnosis of pathologic stress to prevent the risk of developing stress-related diseases in caregivers. Our aim was to assess the self-perceived stress, that is, how and how much the stressor affects the individual, through endocrine, metabolic, and immunologic biomarkers levels in geriatric and oncologic informal caregivers. Informal caregivers and non-caregivers were invited to participate in a cross-sectional study at the Clinic Hospital of Barcelona. Demographic and lifestyle characteristics, self-perceived stress (Perceived Stress Scale, State-Trait Anxiety Inventory and Stress Visual Analogue Scale), and biomarkers (copeptin, glucose, glycated hemoglobin, low-density lipoprotein cholesterol (LDL), high-density lipoprotein cholesterol (HDL), cholesterol, triglycerides, α-amylase, cortisol, tumor necrosis factor (TNF-α), and Interleukins (IL-6 and IL-10)) were evaluated. Descriptive and non-parametric statistical data analysis were performed. Fifty-six subjects (19 non-caregivers, 17 geriatric caregivers, and 20 oncologic caregivers) participated. Median age (IQR) was 57 years (47-66) and 71.46% were women. Self-perceived stress was higher in oncologic caregivers than geriatric caregivers in all psychometric test analyzed (Wilcoxon Rank Sum test, p value < .05). Glucose concentrations and glycated hemoglobin levels differed statistically among groups (Kruskal-Wallis test (K-W tests), p value < .05), even though the median levels were not clinically relevant. Levels of other biomarkers did not differ significantly (K-W tests, p value > .05). These findings suggest that perceived stress is not homogeneous in the caregivers community and thus these two groups could be differentiated. These results provide the baseline information to initiate social actions addressed to each group of caregivers to increase their wellbeing.

Randomized Trial of the Family Intervention: Telephone Tracking-Caregiver for Dementia Caregivers: Use of Community and Healthcare Resources.

PubMed

Tremont, Geoffrey; Davis, Jennifer D; Ott, Brian R; Galioto, Rachel; Crook, Cara; Papandonatos, George D; Fortinsky, Richard H; Gozalo, Pedro; Bishop, Duane S

2017-05-01

To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking-Caregiver (FITT-C), on community support and healthcare use by dementia caregivers. Randomized, controlled trial. Academic medical center. Dyads (n = 250) of distressed informal dementia caregivers and care recipients. Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master's-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies. Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions. Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group. An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Sleep among bereaved caregivers of patients admitted to hospice: a 1-year longitudinal pilot study

PubMed Central

Slåtten, Kari; Saghaug, Elisabeth; Grov, Ellen Karine; Normann, Are Peder; Lee, Kathryn A; Bjorvatn, Bjørn; Gay, Caryl L

2016-01-01

Objectives This pilot study aimed to describe the sleep of partners and other family caregivers prior to and in the first year after a hospice patient's death. The study also evaluated the feasibility of the study protocol and determined the effect sizes in preparation for a full-scale study. Design The pilot study used a longitudinal, descriptive and comparative design. Setting and participants Participants included primary family caregivers of patients admitted to a hospice in Oslo, Norway. Primary outcome Caregiver sleep was measured subjectively with the Pittsburgh Sleep Quality Index (PSQI) and objectively using wrist actigraphy for 4 nights and 3 days at three different times: during the hospice stay, and at 6 and 12 months after the patient's death. Results 16 family caregivers (10 partners and 6 other family members) completed the 1-year study protocol. Overall, sleep quality and quantity were stable over time and at each assessment, approximately half of the sample had poor sleep quality, both by self-report and objective measures. However, the sleep trajectories differed significantly over time, with older caregivers (≥65 years) having significantly longer sleep durations than younger caregivers (<65 years). Furthermore, sleep quality also differed over time depending on the caregiver's relationship to the patient, with partner caregivers having significantly worse sleep quality than other family caregivers. Conclusions Caring for a dying family member is known to interfere with sleep, yet little is known about bereaved caregivers. The results of this pilot study demonstrate the feasibility of the longitudinal study protocol and indicate that sleep problems are common for caregivers and continue into the bereavement period, particularly for partner caregivers. The caregiver's relationship to the patient may be an important factor to consider in future studies. PMID:26729383

Effect of Moderate to Vigorous Physical Activity Intervention on Improving Dementia Family Caregiver Physical Function: A Randomized Controlled Trial

PubMed Central

Farran, Carol J; Etkin, Caryn D; Eisenstein, Amy; Paun, Olimpia; Rajan, Kumar B; Sweet, Cynthia M Castro; McCann, Judith J; Barnes, Lisa L; Shah, Raj C; Evans, Denis A

2017-01-01

Objective Alzheimer’s disease and related dementias (ADRD) affect more than five million Americans and their family caregivers. Caregiving creates challenges, may contribute to decreased caregiver health and is associated with $9.7 billion of caregiver health care costs. The purpose of this 12 month randomized clinical trial (RCT) was to examine if the Enhancing Physical Activity Intervention (EPAI), a moderate to vigorous physical activity (MVPA) treatment group, versus the Caregiver Skill Building Intervention (CSBI) control, would have greater: (1) MVPA adherence; and (2) physical function. Methods Caregivers were randomly assigned to EPAI or CSBI (N=211). MVPA was assessed using a self-report measure; and physical function was objectively assessed using two measures. Intention-to-treat analyses used descriptive, categorical and generalized estimating equations (GEE), with an exchangeable working correlation matrix and a log link, to examine main effects and interactions in change of MVPA and physical function over time. Results At 12 months, EPAI significantly increased MVPA (p=<0.001) and number of steps (p=< .01); maintained stable caregiving hours and use of formal services; while CSBI increased hours of caregiving (p=<0.001) and used more formal services (p=<0.02). Qualitative physical function data indicated that approximately 50% of caregivers had difficulties completing physical function tests. Conclusion The EPAI had a stronger 12 month effect on caregiver MVPA and physical function, as well as maintaining stability of caregiving hours and formal service use; while CSBI increased caregiving hours and use of formal services. A study limitation included greater EPAI versus CSBI attrition. Future directions are proposed for dementia family caregiver physical activity research. PMID:28752016

Intimate personal violence and caregiving: Influences on physical and mental health in middle-aged women.

PubMed

Ferreira, Pablo; Loxton, Deborah; Tooth, Leigh R

2017-08-01

To investigate if women with a history of having experienced intimate partner violence (IPV) who undertook caregiving would experience worse mental and physical health compared to those without caregiving roles. IPV, caregiving history and data on covariates were collected between 1996 and 2010 from 8453 participants in the Australian Longitudinal Study on Women's Health aged between 45 and 65 over the course of the study. Regression analyses were used to analyse the association of IPV and caregiving (categorised as IPV+caregiving, IPV+no caregiving, no IPV+caregiving, no IPV+no caregiving), with and without adjustment for covariates, on mental and physical health-related quality of life (HRQOL), depressive symptoms and perceived stress, measured in 2010. Experiencing IPV and being a caregiver was associated with poor health outcomes on three of the four outcomes (depressive symptoms, OR 2.08, 95% CI 1.58, 2.75; stress, OR 2.11, 95% CI 1.55, 2.87; physical HRQOL β -2.39, 95% CI -3.34, -1.44; all p≤0.001, fully adjusted) compared with not experiencing IPV or caregiving. On these outcomes, IPV and caregiving combined had a stronger association than IPV or caregiving separately. For mental HRQOL, a weaker association was found (OR 1.41 95% CI 1.02, 1.95, fully adjusted, p=0.04). This paper provides evidence for the cumulative health impact of stressful life events, both those that are perpetrated against an individual (violence) and those undertaken with a degree of personal agency (caregiving). The findings underscore the need to understand the drivers of poor health, for clinicians to ask about life circumstances of patients experiencing poor health, and for the provision of referral pathways for complex cases. Copyright © 2017 Elsevier B.V. All rights reserved.

Exploring oral literacy in communication with hospice caregivers.

PubMed

Wittenberg-Lyles, Elaine; Goldsmith, Joy; Oliver, Debra Parker; Demiris, George; Kruse, Robin L; Van Stee, Stephanie

2013-11-01

Low oral literacy has been identified as a barrier to pain management for informal caregivers who receive verbal instructions on pain medication and pain protocols. To examine recorded communication between hospice staff and informal caregivers and explore caregiver experiences. Using transcripts of interactions (n = 47), oral literacy features were analyzed by examining the generalized language complexity using the Flesch-Kincaid grading scale and the dialogue interactivity defined by talking turns and interaction time. Means for longitudinal follow-up measures on caregiver anxiety, quality of life, perception of pain management, knowledge and comfort providing pain medication, and satisfaction were examined to explore their relationship to oral literacy. Communication between team members and caregivers averaged a fourth-grade level on the Flesch-Kincaid scale, indicating that communication was easy to understand. Reading ease was associated (r = 0.67, P < 0.05) with caregiver understanding of and comfort with pain management. Perceived barriers to caregiver pain management were lower when sessions had increased use of passive sentences (r = 0.61, P < 0.01), suggesting that passive voice was not an accurate indicator of language complexity. Caregiver understanding and comfort with administering pain medications (r = -0.82, P < 0.01) and caregiver quality of life (r = -0.49, P < 0.05) were negatively correlated with dialogue pace. As the grade level of talk with caregivers and hospice teams increased, associated caregiver anxiety increased. Caregivers with higher anxiety also experienced greater difficulty in understanding pain medication and its management. Specific adjustments that hospice teams can make to improve caregiver experiences are identified. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Medical Care Tasks among Spousal Dementia Caregivers: Links to Care-Related Sleep Disturbances.

PubMed

Polenick, Courtney A; Leggett, Amanda N; Maust, Donovan T; Kales, Helen C

2018-05-01

Medical care tasks are commonly provided by spouses caring for persons living with dementia (PLWDs). These tasks reflect complex care demands that may interfere with sleep, yet their implications for caregivers' sleep outcomes are unknown. The authors evaluated the association between caregivers' medical/nursing tasks (keeping track of medications; managing tasks such as ostomy care, intravenous lines, or blood testing; giving shots/injections; and caring for skin wounds/sores) and care-related sleep disturbances. A retrospective analysis of cross-sectional data from the 2011 National Health and Aging Trends Study and National Study of Caregiving was conducted. Spousal caregivers and PLWDs/proxies were interviewed by telephone at home. The U.S. sample included 104 community-dwelling spousal caregivers and PLWDs. Caregivers reported on their sociodemographic and health characteristics, caregiving stressors, negative caregiving relationship quality, and sleep disturbances. PLWDs (or proxies) reported on their health conditions and sleep problems. Caregivers who performed a higher number of medical/nursing tasks reported significantly more frequent care-related sleep disturbances, controlling for sociodemographic and health characteristics, caregiving stressors, negative caregiving relationship quality, and PLWDs' sleep problems and health conditions. Post hoc tests showed that wound care was independently associated with more frequent care-related sleep disturbances after accounting for the other medical/nursing tasks and covariates. Spousal caregivers of PLWDs who perform medical/nursing tasks may be at heightened risk for sleep disturbances and associated adverse health consequences. Interventions to promote the well-being of both care partners may benefit from directly addressing caregivers' needs and concerns about their provision of medical/nursing care. Copyright © 2018 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

Quantifying the burden of informal caregiving for patients with cancer in Europe.

PubMed

Goren, Amir; Gilloteau, Isabelle; Lees, Michael; DaCosta Dibonaventura, Marco

2014-06-01

Informal caregivers for patients with cancer provide critical emotional and instrumental support, but this role can cause substantial burden. This study expands our understanding of cancer-related caregiving burden in Europe. Caregivers (n = 1,713) for patients with cancer and non-caregivers (n = 103,868) were identified through the 2010 and 2011 European Union National Health and Wellness Survey, administered via the Internet to adult populations in France, Germany, Italy, Spain, and the United Kingdom. Respondents completed measures of sociodemographics and health behaviors, health-related quality of life (using SF-12v2), work productivity and activity impairment (using WPAI), healthcare resource use (emergency room visits, hospitalizations, and traditional provider visits), and reported diagnosis of stress-related comorbidities (depression, anxiety, insomnia, headache, migraine, and gastrointestinal problems). Two-sided tests of means or proportions compared caregivers against non-caregivers. Multivariable regression models, comparing caregivers for patients with any cancer vs. non-caregivers on all health outcomes, adjusted for covariates (age, sex, college, income, marital status, employment, body mass index, alcohol, smoking, and Charlson comorbidity index). Caregivers for patients with cancer vs. non-caregivers reported significant (P < 0.05) impairment across all health outcomes, even after adjusting for several confounds (e.g., 3.26-point lower mental health status, 0.043-point lower health utilities, 1.46 times as much work impairment, and 1.97 times the odds of anxiety). Caregivers for patients with cancer experienced significant impairments. These findings reinforce the need for enhancing our understanding of the caregiving experience and developing supportive and personalized multicomponent interventions for caregivers, given their pivotal role in providing support for patients.

The influence of caregiver depression on adolescent mental health outcomes: findings from refugee settlements in Uganda.

PubMed

Meyer, Sarah R; Steinhaus, Mara; Bangirana, Clare; Onyango-Mangen, Patrick; Stark, Lindsay

2017-12-19

Family-level predictors, including caregiver depression, are considered important influences on adolescent mental health. Adolescent depression and anxiety in refugee settings is known to be a significant public health concern, yet there is very limited literature from humanitarian settings focusing on the relationship between caregiver mental health and adolescent mental health. In the context of a larger study on child protection outcomes in refugee settings, researchers explored the relationship between caregiver depression and adolescent mental health in two refugee settlements, Kiryandongo and Adjumani, in Uganda. Adolescents between 13 and 17 and their caregivers participated in a household survey, which included measures of adolescent anxiety and depression, and caregiver depression. Analysis was conducted using multiple logistic regression models, and results were reported for the full sample and for each site separately. In Kiryandongo, a one-unit increase in a caregiver's depression score tripled the odds that the adolescent would have high levels of anxiety symptoms (AOR: 3.0, 95% CI: 1.4, 6.1), while in Adjumani, caregiver depression did not remain significant in the final model. Caregiver depression, gender and exposure to violence were all associated with higher symptoms of adolescent depression in both sites and the full sample, for example, a one unit increase in caregiver depression more than tripled the odds of higher levels of symptoms of adolescent depression (AOR: 3.6, 95% CI: 2.0, 6.2). Caregiver depression is a consistently significantly associated with adverse mental health outcomes for adolescents in this study. Adolescent well-being is significantly affected by caregiver mental health in this refugee context. Child protection interventions in humanitarian contexts do not adequately address the influence of caregivers' mental health, and there are opportunities to integrate child protection programming with prevention and treatment of caregivers' mental health symptoms.

Physical disability contributes to caregiver stress in dementia caregivers.

PubMed

Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank

2005-03-01

Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.

Marianismo and Caregiving Role Beliefs Among U.S.-Born and Immigrant Mexican Women.

PubMed

Mendez-Luck, Carolyn A; Anthony, Katherine P

2016-09-01

We aimed to explore how women of Mexican-origin conceptualized caregiving as a construct in terms of cultural beliefs, social norms, role functioning, and familial obligations. We examined the personal experiences of U.S-born and immigrant Mexican female caregivers to identify how these 2 groups differed in their views of the caregiver role. We conducted 1-time in-depth interviews with 44 caregivers living in Southern California. Our study was guided by marianismo, a traditional role occupied by women in the Mexican family. We analyzed data from a grounded theory approach involving the constant comparative method to refine and categorize the data. The majority of all caregivers had similar views about caregiving as an undertaking by choice, and almost all caregivers engaged in self-sacrificing actions to fulfill the marianismo role. Despite these similarities, U.S.-born and immigrant caregivers used different words to describe the same concepts or assigned different meanings to other key aspects of caregiving, suggesting that these 2 groups had different underlying motivations for caregiving and orientations to the role. Our findings highlight the complexity of language and culture in underlying caregiving concepts, making the concepts challenging to operationalize and define in a heterogeneous sample of Latinos. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Potentially preventable hospitalizations in dementia: family caregiver experiences.

PubMed

Sadak, Tatiana; Foster Zdon, Susan; Ishado, Emily; Zaslavsky, Oleg; Borson, Soo

2017-07-01

Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions. Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers' reactions to the hospitalization and recollections of the events leading up to it. Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises. This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

Pilot testing of the "First You Should Get Stronger" program among caregivers of older adults with dementia.

PubMed

Lök, Neslihan; Bademli, Kerime

In this study, randomized controlled interventional study pattern was used to examine the effects of the "First You Should Get Stronger" program on the caregiving burden and healthy life style behavior of caregivers of dementia patients. "Zarit Caregiver Burden Scale" and "Healthy Life Style Behavior Scale" were used. The study was completed with 40 caregivers in total with 20 in the intervention group and 20 in the control group. A statistically significant difference was determined between the "Zarit Caregiving Burden Scale" and "Healthy Life Style Behavior Scale" score averages of the intervention group that participated in the "First You Should Get Stronger" program in comparison with those of the control group. It is important for the healths of caregivers to include similar programs for the caregivers of dementia patients in continuous and regular applications. The results highlight the importance of the "First You Should Get Stronger" program significantly decreased the caregiving burden and significantly developed the healthy lifestyle behaviors of caregivers in the intervention group. Since dementia is a difficult neurological syndrome with patients cared at home, it generally wears out the caregivers significantly. It is suggested that the nurses and healthcare professionals working with dementia patients are evaluated separately and that they carry out caregiving applications within the scope of the "First You Should Get Stronger" program. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

An integrated review of interventions to improve psychological outcomes in caregivers of patients with heart failure.

PubMed

Evangelista, Lorraine S; Strömberg, Anna; Dionne-Odom, J Nicholas

2016-03-01

This article examines interventions aimed at improving psychological outcomes (e.g., caregiver burden, quality of life, anxiety, depression, perceived control, stress mastery, caregiver confidence and preparedness, and caregiver mastery) in family caregivers of patients with heart failure. Eight studies meeting the inclusion criteria were included in the review. The most common intervention involved psychoeducation facilitated by a nurse (6/8) and supplemented with a combination of follow-up face-to-face sessions (2/6), home visits (2/6), telephone calls (3/6), and telemonitoring (3/6). Two studies used a support group intervention of four to six sessions. Half of the interventions reported a significant effect on one or more primary outcomes, including caregiver burden (n = 4), depressive symptoms (n = 1), stress mastery (n = 1), caregiver confidence and preparedness (n = 1), and caregiver mastery (n = 1). Compared with dementia and cancer family caregiving, few interventions have been evaluated in caregivers of patients with heart failure. Of the existing interventions identified in this review, considerable variability was observed in aims, intervention content, delivery methods, duration, intensity, methodological rigor, outcomes, and effects. Given this current state of the science, direct comparison of heart failure caregiver interventions and recommendations for clinical practice are premature. Thus, research priority is strongly warranted for intervention development and testing to enhance heart failure caregiver support and education.

Correlates of Perceived Social Support in Chinese Adult Child Caregivers of Parent Stroke Survivors.

PubMed

Pan, Yuqin; Jones, Patricia S

2017-10-01

Prevalence of stroke and traditional filial responsibility involve adult children in caregiving to their parent stroke survivors in China. Support resources are insufficient because of the shrinking size of family and the underdeveloped support system. The aim of this study was to identify the correlates of perceived social support among adult child caregivers of parent stroke survivors in China. A cross-sectional correlational design was used in this study. A nonproportional quota sample of 126 adult child caregivers was recruited from Zhejiang Province, China. Data were collected at either the hospital stroke units or the respondents' homes using structured questionnaires of caregiving dyadic demographics and caregiving characteristics, 14-item Activities of Daily Living, 15-item Mutuality Scale, and 12-item Multidimensional Scale of Perceived Social Support. SPSS 17.0 was used for analysis. Caregivers' mutuality, education, full employment or being retired, monthly income, having a co-carer, and having a father as the care receiver were significantly positively associated with caregivers' perceived social support. However, mutuality was not significantly associated with caregivers' perceived social support after the other factors were adjusted. Adult child caregivers with higher levels of mutuality, education, or monthly income; who are fully employed or are retired; who have a co-carer; or who are caring for a father perceived more social support. Nursing strategies and social policies need to be directed to enhance caregiver mutuality and support caregiving efforts.

Sociodemographic profile and level of burden of dementia patients’ caregivers who participate in a support group

PubMed Central

Diel, Lusiêni; Forster, Letícia M.K.; Kochhann, Renata; Chaves, Márcia Lorena Fagundes

2010-01-01

The Brazilian Alzheimer’s Association recommend the dementia patient’s caregiver to attend group meetings which aim to give information and enable them to express and share feelings with individuals who are facing similar difficulties. Objectives To identify the sociodemographic profile of the individuals who attend the Support Group for Family Members of Individuals with Alzheimer’s disease at Hospital de Clínicas de Porto Alegre, and to verify the degree of burden associated to the care given to this kind of patient. Methods Forty-eight participants were sub-divided into two groups: 23 non-caregivers and 25 caregivers. All participants answered a sociodemographic questionnaire, and the caregivers also answered the Zarit Burden Interview (ZBI). Student’s t test was used for comparison of parametric data, and Chi-square test for categorical data between caregivers and non-caregivers. Spearman’s rho correlation analysis was performed for the ZBI and the studied variables. Results Participants were predominantly women. Only age differentiated one subgroup from the other. The mean score on the ZBI was 35.1 (14.7), and most of the caregivers presented up to moderate burden. Conclusions Women attended the Support Group either as caregiver or non-caregiver. The level of burden among caregivers of high educational attainment was relatively high besides the short time as caregiver (up to a year). PMID:29213691

Combining Formal and Informal Caregiving Roles: The Psychosocial Implications of Double- and Triple-Duty Care

PubMed Central

Davis, Kelly D.; Zarit, Steven H.; Moen, Phyllis; Hammer, Leslie B.; Almeida, David M.

2016-01-01

Objectives. Women who combine formal and informal caregiving roles represent a unique, understudied population. In the literature, healthcare employees who simultaneously provide unpaid elder care at home have been referred to as double-duty caregivers. The present study broadens this perspective by examining the psychosocial implications of double-duty child care (child care only), double-duty elder care (elder care only), and triple-duty care (both child care and elder care or “sandwiched” care). Method. Drawing from the Work, Family, and Health Study, we focus on a large sample of women working in nursing homes in the United States (n = 1,399). We use multiple regression analysis and analysis of covariance tests to examine a range of psychosocial implications associated with double- and triple-duty care. Results. Compared with nonfamily caregivers, double-duty child caregivers indicated greater family-to-work conflict and poorer partner relationship quality. Double-duty elder caregivers reported more family-to-work conflict, perceived stress, and psychological distress, whereas triple-duty caregivers indicated poorer psychosocial functioning overall. Discussion. Relative to their counterparts without family caregiving roles, women with combined caregiving roles reported poorer psychosocial well-being. Additional research on women with combined caregiving roles, especially triple-duty caregivers, should be a priority amidst an aging population, older workforce, and growing number of working caregivers. PMID:25271309

The Caregiving Experience in a Racially Diverse Sample of Cancer Family Caregivers

PubMed Central

Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth

2009-01-01

The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools. PMID:18772665

Effects of an adapted leisure education program as a means of support for caregivers of people with dementia.

PubMed

Carbonneau, Hélène; Caron, Chantal D; Desrosiers, Johanne

2011-01-01

The loss of autonomy associated with dementia affects the people with dementia themselves as well as their caregivers who are often left feeling powerless and incompetent in their caregiving role. Most of the programs developed to support caregivers focus on burden and do not consider the positive aspects of caregiving. Leisure represents a way to enhance the presence of positive aspects in the caring experience. Moreover, leisure might contribute to the maintenance of satisfactory relationships between the caregivers and the person with dementia. An adapted leisure education program was developed as a means of support to caregiver involvement. This study (n=49) aims to evaluate the impact of this program on caregivers' well-being, self-efficacy towards adapted leisure, and quality of the relationship with the care receiver. Mixed methods were used. Pretest-posttest with a follow-up design made up the quantitative part. In addition, open-end interviews (n=10) were conducted. The quantitative results showed few impacts of the program on caregivers. However, the qualitative analysis revealed that the intervention had positive impacts for the caregivers, care receivers and other family members. This study introduces caregiver support in a new, positive perspective by focusing on the positive aspects of caregiving rather than the burden. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.

Role of Social Support in Predicting Caregiver Burden

PubMed Central

Rodakowski, Juleen; Skidmore, Elizabeth R.; Rogers, Joan C.; Schulz, Richard

2012-01-01

Objective To examine the unique contribution of social support to burden in caregivers of adults aging with spinal cord injuries (SCI). Design Secondary analyses of cross-sectional data from a large cohort of adults aging with SCI and their primary caregivers. Setting Multiple community locations in Pittsburgh, PA, and Miami, FL. Participants Caregivers of community-dwelling adults aging with SCI (n=173) were interviewed as part of a multisite randomized clinical trial. The mean age of caregivers was 53 years (SD=15) and of care-recipients 55 years (SD=13). Interventions Not applicable. Main Outcome Measures The primary outcome was caregiver burden measured with the Abridged Version of the Zarit Burden Interview. A hierarchical multiple regression analysis examined social supports (social integration, received social support, and negative social interactions) effect on burden in caregivers of adults aging while controlling for demographic characteristics and caregiving characteristics. Results After controlling for demographic characteristics and caregiving characteristics, social integration (β̂ =−.16, P<.05), received social support (β̂ =−.15, P<.05), and negative social interactions (β̂ =.21, P<.01) were significant independent predictors of caregiver burden. Conclusions Findings demonstrate that social support is an important factor associated with burden in caregivers of adults aging with SCI. Social support should be considered for assessments and interventions designed to identify and reduce caregiver burden. PMID:22824248

Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research

PubMed Central

Douglas, Sara L; Mazanec, Polly; Lipson, Amy; Leuchtag, Mary

2016-01-01

Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient’s condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members’ well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested. PMID:27081643

Relationship between Mental Health and Burden among Primary Caregivers of Outpatients with Schizophrenia.

PubMed

Yu, Wenjun; Chen, Jia; Hu, Jize; Hu, JingChu

2018-01-24

There is growing recognition that caring for a patient with schizophrenia often results in high levels of perceived burden and poorer overall mental health for caregivers. A quantitative cross-sectional design and standardized instruments were used to collect data from 355 primary caregivers of adults in outpatient care with schizophrenia in China. Structural equation modeling was used to examine the association between caregiver burden and mental health among primary caregivers and whether this association is influenced by personality, coping style, and family functioning, based on a diathesis-stress perspective. Goodness-of-fit indices (χ 2 /df = 1.406, GFI = 0.919, CFI = 0.957, etc.) confirmed that the modified model fit the data well. In line with the diathesis-stress model, and with this study's hypotheses, we found that caregiver burden was significantly related to mental health outcomes directly. The final model showed that personality traits, coping style, and family function influenced the relationship between caregiver burden and mental health. The neuroticism personality traits have a direct effect on caregiver burden and family functioning in this sample. Coping style had a direct effect on the caregiver burden, and family functioning had a direct effect on the caregiver burden. Our final model about primary caregivers can be applied clinically to predict mental health outcomes from caregiver burden. © 2018 Family Process Institute.

Elderly Parents and Adult Children as Caregivers. Highlights: An ERIC/CAPS Digest.

ERIC Educational Resources Information Center

Libert, Anne Blanford

This digest presents a contemporary description of the American elderly and adult children's caregiving to their parents. It includes a profile of the American elderly; a description of caregiving tasks performed by their adult children; and the impact of longer life expectancy, divorce rates, and employed daughters on caregiving. Caregiver strain…

Comparing the Experiences of Black and White Caregivers of Dementia Patients.

ERIC Educational Resources Information Center

Cox, Carole

1995-01-01

Using a conceptual stress development model that treats informal supports and competency as potential mediators, examined outcomes of caregiving in samples of black and white caregivers. A perceived lack of informal supports and a sense of incompetency exacerbated stress among black caregivers but had no effects among the white caregivers. (RJM)

Combining Employment and Caregiving: An Intricate Juggling Act.

ERIC Educational Resources Information Center

Guberman, Nancy; Maheu, Pierre

1999-01-01

The process that allows family caregivers to combine employment and elder care was examined in interviews with 25 caregivers. The effects of elder care on employment are the result of the degree to which caregivers manage to maintain balance between different life spheres: personal and social life, family life, caregiving, and employment. (53…

Caregiving Styles: A Cognitive and Behavioral Typology Associated with Dementia Family Caregiving

ERIC Educational Resources Information Center

Corcoran, Mary A.

2011-01-01

Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted.…

Information Needs of Family Caregivers of Persons with Cognitive versus Physical Deficits

ERIC Educational Resources Information Center

Koenig, Kelly N.; Steiner, Victoria; Pierce, Linda L.

2011-01-01

This study compared information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment. Caregivers were provided a 48-item survey and asked to choose their top ten information needs. Dementia caregivers' (n = 33) top needs were dealing with forgetfulness/confusion (91%) and repeating…

Multi-Family Groups for Multi-Stressed Families: Initial Outcomes and Future Implications

ERIC Educational Resources Information Center

Jackson, Jerrold M.

2015-01-01

Purpose: To examine the influence of caregiver stress on attendance among urban families involved in a multiple family group (MFG) intervention, as well as pre/post changes in childhood behavioral difficulties, caregiver stress, caregiver depressive symptoms, caregiver coping by substance use, and caregiver motivation to change. Methods:…

A Pilot Evaluation of the Family Caregiver Support Program

ERIC Educational Resources Information Center

Chen, Ya-Mei; Hedrick, Susan C.; Young, Heather M.

2010-01-01

The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative…

Supporting Caregivers in Developing Responsive Communication Partnerships with Their Children: Extending a Caregiver-Led Interactive Language Program

ERIC Educational Resources Information Center

Cologon, Kathy; Wicks, Lilly; Salvador, Aliza

2017-01-01

This study investigates whether extension of a caregiver-led interactive language program may enhance its effectiveness in supporting communication. Caregiver-led language programs, which focus on establishing responsive interaction patterns to support opportunities for communication between caregivers and young children within natural settings,…

Neuroticism and Longitudinal Change in Caregiver Depression: Impact of a Spouse-Caregiver Intervention Program

ERIC Educational Resources Information Center

Jang, Yuri; Clay, Olivio J.; Roth, David L.; Haley, William E.; Mittelman, Mary S.

2004-01-01

Purpose: We examined the impact of caregiver neuroticism on longitudinal change in depression among spouse-caregivers of individuals with Alzheimer's disease receiving either enhanced psychosocial treatment or usual care. We were interested in whether high levels of caregiver neuroticism would lead to a diminished response to the enhanced…

Gender differences in spousal caregiving in Japan.

PubMed

Sugiura, Keiko; Ito, Mikiko; Kutsumi, Masami; Mikami, Hiroshi

2009-01-01

Gender differences in spousal caregivers and their relationship to care experiences, social demographics, and caregivers' depression were examined. A stratified random sample of 2,020 users of public long-term care insurance in a city of Osaka prefecture, Japan, participated in this study. Responses from 308 spouses (56.2% wives, 43.8% husbands) were analyzed. Variables relating to care experiences, social demographics, and caregivers' depression were compared by conducting simultaneous analyses of multiple populations. Wives caring for husbands had higher depression scores than husbands caring for wives. Wives tended to adopt "emotional support seeking" and "willing commitment" as coping strategies for their caregiving experience. Husband caregivers used more home-care services; however, increased service use had no effect on husbands' depression. The availability of secondary caregivers reduced depression for caregivers, regardless of gender. The effects on depression differed related to the caregiver's gender. Husbands relied more on family or home-care services when caring for their wives, whereas wives provided higher levels of care, positively accepted their role, and did not seek to share caregiving, but sought emotional support.

The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

PubMed Central

Roberts, Emily; Struckmeyer, Kristopher M.

2018-01-01

Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming. PMID:29424252

Psychosocial experiences and needs of Australian caregivers of people with stroke: prognosis messages, caregiver resilience, and relationships.

PubMed

El Masry, Yasmeen; Mullan, Barbara; Hackett, Maree

2013-01-01

Despite stroke being the most common form of cerebrovascular disease, there has been relatively little attention paid to the psychosocial experiences and needs of Australian caregivers of people who have had a stroke. Twenty Australian informal caregivers and 10 stroke survivors participated in individual semi-structured qualitative interviews covering all aspects of caregiving, including stroke survivors' views on their caregiver's experiences. The 5 interrelated topics most discussed were changes in relationships and support services, including being told to expect a poor outcome; caregiver attributes and coping strategies; stroke survivor limitations; external employment and financial stressors; and unexpected positive changes in relationships and priorities. Caring for a stroke survivor involves a complex interaction of these factors that appear to be moderated by the quality of the pre-existing stroke survivor-caregiver relationship and the poststroke coping strategies used. Particular attention should be paid to how prognosis is conveyed and whether appropriate outpatient services are available. Clinicians should also consider discussing appropriate caregiver coping strategies and the quality of the relationship between the stroke survivor and caregiver.

Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

PubMed

Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda

2013-07-01

Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication

PubMed Central

Wittenberg-Lyles, Elaine; Oliver, Debra Parker; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L.

2012-01-01

Objective The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Methods Empathic opportunities and hospice team responses were analyzed from biweekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Results Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Conclusion Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Practice implications Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. PMID:22554387

Family caregivers of individuals with frontotemporal dementia: examining the relationship between coping and caregiver physical and mental health.

PubMed

Wong, Cindy C; Wallhagen, Margaret I

2014-01-01

To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p < 0.05), and a small but nonsignificant positive correlation was noted between emotion-focused coping and caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p < 0.05) made a statistically significant, unique contribution to caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD. Copyright 2014, SLACK Incorporated.

Conveying empathy to hospice family caregivers: team responses to caregiver empathic communication.

PubMed

Wittenberg-Lyles, Elaine; Debra, Parker Oliver; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L

2012-10-01

The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgements of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Posttraumatic Stress and Depression in the Nonoffending Caregivers of Sexually Abused Children: Associations with Parenting Practices

PubMed Central

Jobe-Shields, Lisa; Swiecicki, Carole C.; Fritz, Darci R.; Stinnette, Jessica S.; Hanson, Rochelle F.

2016-01-01

Caregiver mental health is a known correlate of parenting practices, and recent research indicated that parental depression following childhood sexual abuse disclosure is associated with concurrent parenting difficulties. The present study extended this line of research by investigating posttraumatic stress symptoms and depression in a sample of caregivers (N=96) of children who experienced sexual abuse recruited from a Children’s Advocacy Center, as well as parenting practices reported by both caregivers and their children (Mean age = 10.79 years, SD = 3.29; 79% female). Twenty four percent of caregivers met criteria for presumptive clinical depression, clinically significant posttraumatic stress, or both. Results indicated elevated caregiver-reported inconsistent parenting in the context of clinically significant distress across symptom groups; children reported particularly elevated inconsistent parenting for caregivers with posttraumatic stress only. Caregiver depression was associated with low self-reported positive parenting and caregiver involvement, in addition to self-reported inconsistencies. Directions for future research are offered to further elucidate the relationships between caregiver mental health and parenting practices following childhood sexual abuse. PMID:26808966

Family-based therapy for dementia caregivers: clinical observations

PubMed Central

MITRANI, V. B.; CZAJA, S. J.

2008-01-01

Family caregiving for dementia patients is a major social and clinical problem. Family caregivers face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected increase in the number of people with dementia, there is a need to identify approaches that will help families manage the challenges of caregiving. Social support from friends and family members has consistently been found to mediate caregiver outcomes, yet many caregivers face problems with isolation and estrangement from family members. In this regard, family-based therapy is a promising intervention for increasing social support for caregivers, and enhancing their quality of life and ability to provide care.This paper will discuss how family-based therapy can be applied as an intervention for family caregivers of dementia patients.The clinical implications of specific interactional patterns will be presented via case examples from an ongoing clinical trial with white American and Cuban American caregivers of dementia patients.The intent is to demonstrate how identification of interactional patterns is a valuable tool for implementing family-based interventions. PMID:18548132

Predictor of increase in caregiver burden for disabled elderly at home.

PubMed

Okamoto, Kazushi; Harasawa, Yuko

2009-01-01

In order to classify the caregivers at high risk of increase in their burden early, linear discriminant analysis was performed to obtain an effective discriminant model for differentiation of the presence or absence of increase in caregiver burden. The data obtained by self-administered questionnaire from 193 caregivers of frail elderly from January to February of 2005 were used. The discriminant analysis yielded a statistically significant function explaining 35.0% (Rc=0.59; d.f.=6; p=0.0001). The configuration indicated that the psychological predictors of change in caregiver burden with much perceived stress (1.47), high caregiver burden at baseline (1.28), emotional control (0.75), effort to achieve (-0.28), symptomatic depression (0.20) and "ikigai" (purpose in life) (0.18) made statistically significant contributions to the differentiation between no increase and increase in caregiver burden. The discriminant function showed a sensitivity of 86% and specificity of 81%, and successfully classified 83% of the caregivers. The function at baseline is a simple and useful method for screening of an increase in caregiver burden among caregivers for the frail elderly at home.

Assessment of attachment behaviour to human caregivers in wolf pups (Canis lupus lupus).

PubMed

Hall, Nathaniel J; Lord, Kathryn; Arnold, Anne-Marie K; Wynne, Clive D L; Udell, Monique A R

2015-01-01

Previous research suggested that 16-week old dog pups, but not wolf pups, show attachment behaviour to a human caregiver. Attachment to a caregiver in dog pups has been demonstrated by differential responding to a caregiver compared to a stranger in the Ainsworth Strange Situation Test. We show here that 3-7 week old wolf pups also show attachment-like behaviour to a human caregiver as measured by preferential proximity seeking, preferential contact, and preferential greeting to a human caregiver over a human stranger in a modified and counterbalanced version of the Ainsworth Strange Situation Test. In addition, our results show that preferential responding to a caregiver over a stranger is only apparent following brief isolation. In initial episodes, wolf pups show no differentiation between the caregiver and the stranger; however, following a 2-min separation, the pups show proximity seeking, more contact, and more greeting to the caregiver than the stranger. These results suggest intensive human socialization of a wolf can lead to attachment--like responding to a human caregiver during the first two months of a wolf pup's life. Published by Elsevier B.V.

Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study.

PubMed

Nemati, Shahnaz; Rassouli, Maryam; Ilkhani, Mahnaz; Baghestani, Ahmad Reza

2018-03-01

The experience of caring for a family member with cancer is associated with several care-related problems and challenges for the caregiver. The comprehensive and in-depth understanding of the trials and tribulations of caregiving can be a step towards resolving the problems faced by family caregivers of these patients. The present study aimed to explore challenges faced by Iranian family caregivers of cancer patients. The present qualitative study was conducted through in-depth semi-structured interviews held with 21 family caregivers of cancer patients selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analysed through conventional content analysis. The codes extracted from interviews produced four main themes, including 'confusion', 'uncertainty', 'disintegration' and 'setback', which collectively caused suffering for family caregivers. Care provided in an atmosphere of suffering and discontent diminishes caregiver's quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans. © 2017 Nordic College of Caring Science.

Caring stress, suicidal attitude and suicide care ability among family caregivers of suicidal individuals: a path analysis.

PubMed

Chiang, C-Y; Lu, C-Y; Lin, Y-H; Lin, H-Y; Sun, F-K

2015-12-01

What is known on the subject? Suicide is a global mental health issue. Taking care of suicidal individuals is a substantial challenge. Most studies emphasize the suicidal individual. Few studies have emphasized the family caregivers of suicidal individuals. No study has explored the relationship between family caregivers' caring stress with suicidal attitudes and suicide care ability. What this paper adds to existing knowledge? The main results indicated that the older family caregivers tended to have a more negative attitude towards suicidal individuals. Female family caregivers' stress was higher than that of male family caregivers. A mild level of caring stress would help family caregivers have a more positive attitude towards suicidal individuals. Furthermore, a positive attitude would help family caregivers improve their caring ability. What are the implications for practice? Mental health nurses could help family caregivers, especially female family caregivers, reduce their holistic caring burden by looking for support resources and enhancing their coping strategies. Mental health nurses could help family caregivers promote positive attitudes towards suicidal relatives by understanding suicidal individuals' suffering. Suicide is a global mental health issue. Family caregivers play a key role in preventing suicide attempts. The aim of this study was to examine the relationship among stress due to the family caregiver's role, suicidal attitude of the family caregiver and suicide care ability among family caregivers. Additionally, instruments of caring stress, attitudes towards suicidal relatives and caring abilities used in the study were tested to measure construct validity. A cross-sectional correlational study was conducted with 164 family caregivers of people who are suicidal. The following three questionnaires were used: the Caring Stress Scale, the Suicidal Attitudes Scale and the Suicidal Caring Ability Scale. Structural equation modelling was performed using SPSS AMOS 19.0 to examine the path relationships among variables. Bivariate analyses showed that age was negatively correlated with suicidal attitude. In the final path model, caring stress had a positive effect on suicidal attitudes. Suicidal attitude and suicide care ability were highly positively correlated. Gender had a direct effect on caring stress, which indicated that female family caregivers experienced more stress from their role. Mental health nurses could help family caregivers become aware of the emotional pain that suicidal people experience and then promote their positive attitudes towards their suicidal relatives. Furthermore, family caregivers could increase their ability to care for their suicidal relatives, which could reduce the numbers of suicides. © 2015 John Wiley & Sons Ltd.

Poor caregiver mental health predicts mortality of patients with neurodegenerative disease

PubMed Central

Ford, Brett Q.; Casey, James J.; Miller, Bruce L.; Levenson, Robert W.

2017-01-01

Dementia and other neurodegenerative diseases cause profound declines in functioning; thus, many patients require caregivers for assistance with daily living. Patients differ greatly in how long they live after disease onset, with the nature and severity of the disease playing an important role. Caregiving can also be extremely stressful, and many caregivers experience declines in mental health. In this study, we investigated the role that caregiver mental health plays in patient mortality. In 176 patient–caregiver dyads, we found that worse caregiver mental health predicted greater patient mortality even when accounting for key risk factors in patients (i.e., diagnosis, age, sex, dementia severity, and patient mental health). These findings highlight the importance of caring for caregivers as well as patients when attempting to improve patients’ lives. PMID:28655841

Poor caregiver mental health predicts mortality of patients with neurodegenerative disease.

PubMed

Lwi, Sandy J; Ford, Brett Q; Casey, James J; Miller, Bruce L; Levenson, Robert W

2017-07-11

Dementia and other neurodegenerative diseases cause profound declines in functioning; thus, many patients require caregivers for assistance with daily living. Patients differ greatly in how long they live after disease onset, with the nature and severity of the disease playing an important role. Caregiving can also be extremely stressful, and many caregivers experience declines in mental health. In this study, we investigated the role that caregiver mental health plays in patient mortality. In 176 patient-caregiver dyads, we found that worse caregiver mental health predicted greater patient mortality even when accounting for key risk factors in patients (i.e., diagnosis, age, sex, dementia severity, and patient mental health). These findings highlight the importance of caring for caregivers as well as patients when attempting to improve patients' lives.

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support.

PubMed

Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida

2018-03-01

Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.

Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups

PubMed Central

Aoun, Samar M.; Deas, Kathleen; Howting, Denise; Lee, Gabriel

2015-01-01

A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Care Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers’ feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the evolving caregiver needs at different stages of the disease. PMID:26679505

Burden Among Caregivers of Children Living with Human Immunodeficiency Virus in North India

PubMed Central

Chauhan, Ramesh Chand; Rai, Sanjay Kumar; Kant, Shashi; Lodha, Rakesh; Kumar, Nand; Singh, Neelima

2016-01-01

Background: Due to wider access to and free antiretroviral therapy (ART) program, the number of children dying due to acquired immune deficiency syndrome (AIDS)-related causes has declined and the nature and duration of human immunodeficiency virus (HIV)/AIDS caregiving has also dramatically altered. The care of children living with HIV/AIDS (CLHA) places a significant additional burden on the caregivers. Aims: This study was conducted to assess the perceived burden among caregivers of children living with HIV in North India. Materials and Methods: A hospital-based cross-sectional study among 156 CLHA-caregiver dyads in North India was conducted from June 2010 to May 2011. Data were collected by using a pretested structured interview schedule. The caregiver burden was measured with a 36-item scale adapted from Burden Assessment Schedule of Schizophrenia Research Foundation (BASS). Child characteristics, caregiver characteristics, caregiving burden, the knowledge of caregivers, and issues related to health care, nutrition, education, and psychological aspects were studied. Results: Caregivers had a mean age of 35.9 ± 10.2 years. Women accounted for over three-fourth (76.9%) of the caregivers. Nearly two-third of them (65.4%) reported as living with HIV. The mean caregiver burden score was 68.7 ± 2.9. A majority of the caregivers reported either low or moderate burden. Standardized percentage score was high in the domains of physical and mental health, external support, patients’ behavior, and caregivers’ strategy and seemed to be comparatively less in the other domains such as support of the patient and taking responsibility. Conclusions: Caring of children is a universal practice but there is a need of special care for children living with HIV. The majority of caregivers who were usually the mothers perceived the burden and need to be assisted in caring for the child. Stigma and discrimination with HIV infection further increased the burden as caregivers did not disclose the HIV status to any near and dear one. PMID:27114969

Family caregivers' experiences of caring for patients with heart failure: a descriptive, exploratory qualitative study.

PubMed

Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi

2015-06-01

Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare providers develop and implement suitable intervention programs for caregivers. Healthcare professionals should develop context-based intervention programs to promote caregiver capabilities and encourage caregivers to participate to facilitate the caregiving roles of caregivers.

Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

PubMed Central

Carney, Sile; Corr, Bernie; Mays, Iain; Pender, Niall; Hardiman, Orla

2018-01-01

Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions. PMID:29374665

Exploring the connections between traumatic brain injury caregiver mental health and family dynamics in Mexico City, Mexico.

PubMed

Perrin, Paul B; Stevens, Lillian F; Sutter, Megan; Hubbard, Rebecca; Díaz Sosa, Dulce María; Espinosa Jove, Irma Guadalupe; Arango-Lasprilla, Juan Carlos

2013-10-01

To examine the patterns of family dynamics that are most associated with the mental health of traumatic brain injury (TBI) caregivers from Mexico. It was hypothesized that healthier family dynamics would be associated with better caregiver mental health. A cross-sectional study of self-reported data collected from TBI caregivers through the Mexican National Institute of Rehabilitation in Mexico City, Mexico, the premier public medical facility in Mexico that provides rehabilitation services to patients with various disabilities. One public outpatient medical and rehabilitation facility. Sixty-eight caregivers of individuals with moderate-to-severe TBI from Mexico City, Mexico, were related to an individual with TBI who was ≥3 months after injury, a primary caregiver for ≥3 months, familiar with the patient's history, and without neurologic or psychiatric conditions. The average (standard deviation) age of caregivers was 50.94 ± 12.85 years), and 82% were women. The caregivers completed Spanish versions of instruments that assessed their own mental health and family dynamics. Outcomes assessed included family dynamics (Family Adaptability and Cohesion Evaluation Scale-Fourth Edition; Family Communication Scale; Family Satisfaction Scale; Family Assessment Device-General Functioning; and Relationship-Focused Coping Scale), and caregiver mental health (Patient Health Questionnaire-9, Zarit Burden Interview, and Satisfaction with Life Scale). Results of canonical correlation analyses suggested that caregiver mental health and family dynamics were positively related, with a large effect size. Caregivers with high family satisfaction and cohesion tended to have a low burden and high satisfaction with life. In addition, caregiver depression and burden were positively related to each other and were both inversely related to caregiver satisfaction with life. TBI caregiver interventions in Latino populations would likely benefit from including programming or techniques to improve family dynamics, especially family cohesion, given the strong potentially reciprocal influence of these dynamics on caregiver mental health. Copyright © 2013 American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.

Characteristics of informal caregivers of patients with dementia in Alicante province.

PubMed

Toribio-Díaz, M E; Medrano-Martínez, V; Moltó-Jordá, J M; Beltrán-Blasco, I

2013-03-01

Informal caregivers provide care to dementia patients, and this service prolongs their stay at home. To describe characteristics of dementia patients in the province of Alicante, as well as the profiles and roles of caregivers who assist them. Multi-centre prospective study carried out in 4 neurology departments in Alicante (June 2009 to January 2010). Dementia patients' relatives/caregivers were included in sequential order. The following variables were analysed: a) Demographic information pertaining to the patient and caregivers (age, sex, marital and employment status, educational level, relationship to patient); b) patient's family unit; c) motivating factor for primary caregiver (PC); d) secondary caregiver (SC) roles; e) country of citizenship of formal caregiver (FC) and source of remuneration (private/public); f) caregivers' knowledge of dementia. Most of our patients live at home (74.8%), and are female (69%) with Alzheimer's disease (78.4%) in a moderately severe stage (GDS level 4-5, 71.6%). PCs and SCs are mainly women (72.1% and 60.5% respectively), middle-aged and directly related to the patient (sons/daughters account for 64.3% of the PCs and 54.4% of the SCs); most are homemakers with a low educational level. Caregivers in the first category (PC) provide care due to moral obligation (75%), while those in the second (SC) involve patients in leisure or other stimulating activities (82.3%). Absent caregivers tend to be males (73.3%) residing long distances from the relative (52.4%). The FC tends to be female (91.7%), Spanish (81.8%) and privately remunerated. Women dominate the network of caregivers for dementia patients, whether as principal caregivers, supporting caregivers or formal caregivers (in all cases, they have only limited training in dementia management). Males are largely absent. Better knowledge of the care structure supporting dementia patients may be helpful in the overall management of these patients. Copyright © 2012 Sociedad Española de Neurología. Published by Elsevier Espana. All rights reserved.

Caregiver burden among adults caring for orphaned children in rural South Africa

PubMed Central

Kidman, Rachel; Thurman, Tonya R.

2014-01-01

The AIDS epidemic has created an unprecedented number of orphans. While largely absorbed by extended family, this additional responsibility can weigh heavily on their caregivers. The concept of caregiver burden captures multiple dimensions of well-being (e.g., physical, social and psychological). Measuring the extent and determinants of caregiving burden can inform the design of programmes to ease the negative consequences of caregiving. This study uses the baseline data from a study assessing interventions for orphans and vulnerable adolescents in the Eastern Cape, South Africa. Orphan caregivers (n = 726) completed an adapted version of the 12-item Zarit Burden Interview. In addition to basic caregiver and household demographics, the survey also collected information on AIDS-related illness and recent deaths. Descriptive data are presented, followed by multivariate Poisson regression models to explore factors associated with caregiver burden. Approximately 40% of caregivers reported high levels of orphan caregiving burden. Feelings of stress and inadequacy concerning their care responsibilities as well as anger towards the child were common. Household food insecurity was the most important predictor of orphan caregiving burden (marginal effect = 7.82; p < 0.001 for those reporting severe hunger); income was also a significant determinant. When other AIDS impacts were added to the model, only the AIDS-related illness of the caregiver was significantly associated with burden (marginal effect = 3.77; p < 0.001). This study suggests that caregivers with economic vulnerability and those struggling with their own AIDS-related illness feel most overburdened. These findings are particularly relevant to service providers who must identify caregivers in need of immediate assistance and allocate limited resources effectively. To alleviate caregiver burden, programmes must foster greater economic security (e.g., by facilitating access to social grants or directly providing cash transfers) and coordinate services with home-based care programmes serving the chronically ill. PMID:24999368

Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy.

PubMed

Tseng, Mei-Hui; Chen, Kuan-Lin; Shieh, Jeng-Yi; Lu, Lu; Huang, Chien-Yu; Simeonsson, Rune J

2016-12-01

The study aimed to investigate comprehensively the determinants of the quality of life (QOL) of caregivers of children with cerebral palsy (CP) based on the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). A total of 167 children with CP (mean age 9.06 years, SD 2.61 years) and their caregivers (mean age 40.24 years, SD 5.43 years) participated in this study. The QOL of caregivers was measured with the World Health Organization Quality of Life-BREF-Taiwan version (WHOQOL-BREF-TW). The potential determinants of QOL were collected, including child characteristics, caregiver characteristics, and environmental factors from all dimensions of the ICF-CY and analysed using multiple regression models. Four multiple regression models revealed that determinants of the QOL of caregivers of children with CP was multidimensional, encompassing child characteristics (age, type of CP, fine motor impairment, other diseases, behaviour and emotions, visual impairment, hearing impairment), caregiver characteristics (general mental health, parenting stress, marital status, family coping patterns, and socio-economic status), and environmental factors (child's medication, school setting, and current rehabilitation service, caregiver's spouse's age, family life impacts, and domestic helper). Knowledge of the determinants of QOL could serve as a guide in a holistic approach to evaluation and intervention and help plan interventions targeted at these determinants to improve the QOL of caregivers of children with CP. Implications for Rehabilitation Caregivers of children with CP had lower QOL, except the environment QOL. The QOL determinants of caregivers of children with CP are multidimensional, including child characteristics, caregiver characteristics, and environmental factors. In addition to child characteristics of severity of fine motor impairments and emotional and behavioural problems, caregiver characteristics of general mental health, parenting stress, and coping patterns, and environmental factors of family life impacts, and school setting demonstrated important relationships with caregiver QOL.

Predictors of family caregiver ratings of patient quality of life in Alzheimer disease: cross-sectional results from the Canadian Alzheimer's Disease Quality of Life Study.

PubMed

Naglie, Gary; Hogan, David B; Krahn, Murray; Black, Sandra E; Beattie, B Lynn; Patterson, Christopher; Macknight, Chris; Freedman, Morris; Borrie, Michael; Byszewski, Anna; Bergman, Howard; Streiner, David; Irvine, Jane; Ritvo, Paul; Comrie, Janna; Kowgier, Matthew; Tomlinson, George

2011-10-01

To assess whether the core symptoms of Alzheimer disease (AD) and caregiver factors consistently predict family caregiver ratings of patient quality of life (QOL) as assessed by a variety of QOL measures in a large national sample. : Cross-sectional. Fifteen dementia and geriatric clinics across Canada. : Family caregivers (n = 412) of community-living patients with AD of all severities. Caregiver ratings of patient QOL using three utility indexes, the European Quality of Life-5 Dimensions, Quality of Well-Being Scale and Health Utilities Index; a global QOL visual analogue scale; a disease-specific measure, the Quality of Life-Alzheimer's Disease; and a generic health status measure, the Short Form-36. Patient cognition was assessed with the cognitive subscale of the Alzheimer's Disease Assessment Scale and Mini-Mental State Examination, function with the Disability Assessment for Dementia, and behavioral and psychological symptoms with the Neuropsychiatric Inventory and the Geriatric Depression Scale. Caregiver burden was assessed with the Zarit Burden Interview and caregiver depression with the Center for Epidemiologic Studies Depression scale. One-way analysis of variance and fully adjusted multiple linear regression were used to assess the relationship between patient dementia symptom and caregiver variables with QOL ratings. In multivariable analyses, caregiver ratings of patient function and depressive symptoms were the only consistent independent predictors of caregiver-rated QOL across the QOL measures. Caregiver ratings of patient function and depression were consistent independent predictors of caregiver-rated QOL, using a spectrum of QOL measures, while measures of patient cognition and caregiver burden and depression were not. These findings support the continued use of caregiver ratings as an important source of information about patient QOL and endorse the inclusion in AD clinical trials of caregiver-rated measures of patient function, depression, and QOL.

Caregiving responsibilities and burden among older people by HIV status and other determinants in Uganda.

PubMed

Mugisha, Joseph; Scholten, Francien; Owilla, Sebastian; Naidoo, Nirmala; Seeley, Janet; Chatterji, Somnath; Kowal, Paul; Boerma, Ties

2013-01-01

Older caregivers have major caregiving responsibilities in countries severely affected by the HIV epidemic, but little is known about their own health and well-being. We conducted this study to assess the association of caregiving responsibilities and self-perceived burden with caregivers' health, HIV status, background characteristics and care-receiving among older people in South Western Uganda. Men and women aged 50 years and older were recruited from existing cohort studies and clinic registers and interviewed at home. Health was measured through a composite score of health in eight domains, anthropometry and handgrip strength. Summary measures of caregiving responsibilities and self-reported burden were used to analyse the main associations. There were 510 participants, including 198 living with HIV. Four fifths of women and 66% of men were caregivers. Older respondents with no care responsibility had poorer scores on all health indicators (self-reported health score, body mass index and grip strength). Having a caregiving responsibility was not associated with poorer health status or quality of life. Notably, HIV-infected people, whether on antiretroviral treatment (ART) or not, had similar caregiving responsibilities and health status as others. The self-reported burden associated with caregiving was significantly associated with a poorer health score. One third of female caregivers were the single adult in the household with larger caregiving responsibilities. Many of these women are in the poorest wealth quartile of the households in the study and are therefore more likely to need assistance. Physical and financial supports were received by 70% and 63%, respectively. Those with larger caregiving responsibilities more frequently received support. Caregiving responsibilities were associated with better health status, greater satisfaction and quality of life. Older HIV-infected people, whether on ART or not, had similar caregiving responsibilities and self-reported health status as other older people.

Sleep Quality, Stress, Caregiver Burden, and Quality Of Life in Maternal Caregivers of Young Children With Bronchopulmonary Dysplasia

PubMed Central

Feeley, Christine A.; Turner-Henson, Anne; Christian, Becky J.; Avis, Kristin T.; Heaton, Karen; Lozano, David; Su, Xiaogang

2014-01-01

Little is known about the influence of sleep quality, stress, and caregiver burden on quality of life in maternal caregivers of young children with bronchopulmonary dysplasia (BPD). In 61 maternal caregivers (mean age 29.59 years) of young children with BPD (mean age 13.93 months), caregivers reported sleeping a mean of 5.8 hours, and significant correlations were found between sleep quality and depressive symptoms and stress, as well as an inverse correlation with quality of life. Sleep quality was found to be the most significant predictor of quality of life in maternal caregivers. PMID:23999065

CHESS improves cancer caregivers' burden and mood: results of an eHealth RCT.

PubMed

DuBenske, Lori L; Gustafson, David H; Namkoong, Kang; Hawkins, Robert P; Atwood, Amy K; Brown, Roger L; Chih, Ming-Yuan; McTavish, Fiona; Carmack, Cindy L; Buss, Mary K; Govindan, Ramaswamy; Cleary, James F

2014-10-01

Informal caregivers (family and friends) of people with cancer are often unprepared for their caregiving role, leading to increased burden or distress. Comprehensive Health Enhancement Support System (CHESS) is a Web-based lung cancer information, communication, and coaching system for caregivers. This randomized trial reports the impact on caregiver burden, disruptiveness, and mood of providing caregivers access to CHESS versus the Internet with a list of recommended lung cancer websites. A total of 285 informal caregivers of patients with advanced nonsmall cell lung cancer were randomly assigned to a comparison group that received Internet or a treatment group that received Internet and CHESS. Caregivers were provided a computer and Internet service if needed. Written surveys were completed at pretest and during the intervention period bimonthly for up to 24 months. Analyses of covariance (ANCOVAs) compared the intervention's effect on caregivers' disruptiveness and burden (CQOLI-C), and negative mood (combined Anxiety, Depression, and Anger scales of the POMS) at 6 months, controlling for blocking variables (site, caregiver's race, and relationship to patient) and the given outcome at pretest. Caregivers randomized to CHESS reported lower burden, t(84) = 2.36, p = .021, d = .39, and negative mood, t(86) = 2.82, p = .006, d = .44, than those in the Internet group. The effect on disruptiveness was not significant. Although caring for someone with a terminal illness will always exact a toll on caregivers, eHealth interventions like CHESS may improve caregivers' understanding and coping skills and, as a result, ease their burden and mood.

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study.

PubMed

Henriksson, Anette; Årestedt, Kristofer

2013-07-01

Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. This was a correlational study using a cross-sectional design. The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

Construct validity of the Work Productivity and Activity Impairment questionnaire across informal caregivers of chronically ill older patients.

PubMed

Giovannetti, Erin R; Wolff, Jennifer L; Frick, Kevin D; Boult, Chad

2009-09-01

To assess the validity of the Work Productivity and Activity Impairment questionnaire as adapted for caregiving (WPAI:CG) to measure productivity loss (hours missed from work, impairment while at work, and impairment in regular activities) due to unpaid caregiving for medically complex older adults. The WPAI:CG was administered along with the Caregiver Strain Index (CSI) and Center for Epidemiologic Studies Depression Scale (CESD) to a caregiving population (N = 308) enrolled with their older, medically complex care-recipient in a cluster-randomized controlled study. Correlation coefficients were calculated between each productivity variable derived from the WPAI:CG and CSI/CESD scores. Nonparametric tests for trend across ordered groups were carried out to examine the relationship between each productivity variable and the intensity of the caregiving. Significant positive correlations were found between work productivity loss and caregiving-related strain (r = 0.45) and depression (r = 0.30). Measures of productivity loss were also highly associated with caregiving intensity (P < 0.05) and care-recipient medical care use (P < 0.05). The average employed caregiver reported 1.5 hours absence from work in the previous week and 18.5% reduced productivity while at work due to caregiving. Employed and nonemployed caregivers reported 27.2% reduced productivity in regular activities in the previous week. The results indicate high convergent validity of the WPAI:CG questionnaire. This measure could facilitate research on the cost-effectiveness of caregiver-workplace interventions and provide employers and policy experts with a more accurate and comprehensive estimate of caregiving-related costs incurred by employers and society.

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

PubMed Central

Phillips, Sara S.; Ragas, Daiva M.; Hajjar, Nadia; Tom, Laura S.; Dong, XinQi; Simon, Melissa A.

2015-01-01

Our primary objective was to gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in re-entering the job market, offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, we explored whether training informal caregivers might help them transition into a paid caregiving or other health-service role. We interviewed 55 caregivers of a chronically or terminally ill family member or friend in a suburban collar county near Chicago. The interview guide addressed household economic impact of illness, emotional burden, and training program interest. We found that more than half of caregivers (56%) were interested in training to work outside the home, caring for patients in other households. Notably, 84% indicated a desire to learn more about health care and 68% reported a desire to explore job possibilities in health care. Most of the caregivers (82%) were experienced in working with an older adult who was at least 50 years old. Informal caregivers’ interest in a training program to bolster their qualifications for a role within the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly demographic and the desire of informal caregivers to find gainful employment, this informal caregiver demographic could provide the impetus to invest in informal caregiver training in the future. PMID:26782869

Caregiver burden and fatigue in caregivers of people with dementia: Measuring human herpesvirus (HHV)-6 and -7 DNA levels in saliva.

PubMed

Osaki, Tohmi; Morikawa, Takako; Kajita, Hiroyuki; Kobayashi, Nobuyuki; Kondo, Kazuhiro; Maeda, Kiyoshi

2016-01-01

We examined chronic fatigue, which has not been investigated in detail, in family caregivers for people with dementia. Forty-four community-dwelling family caregivers (the caregiver group: CG) and 50 elderly control participants (the non-caregiver group: NCG) participated in this study. We measured salivary human herpesvirus (HHV)-6 and -7 DNA levels and the Chalder fatigue scale (CFS) to assess levels of fatigue; we also measured the Center for Epidemiologic Studies-Depression Scale, Physical Activity Scale for the Elderly, Zarit Caregiver Burden Interview, Mini-Mental State Examination, Assessment of Motor and Process Skills, and Dementia Behavior Disturbance Scale. For CG, the salivary HHV-6 DNA levels and CFS scores were significantly higher than those in NCG. The salivary HHV-6 DNA levels in CG were significantly correlated with depressive symptoms, the cognitive function of the patients, and the activities of daily living/instrumental activities of daily living (ADL/IADL) abilities of the patients. The CFS scores in CG significantly correlated with caregiver burden, depression symptoms, leisure physical activity, the number of other family caregivers, and the hours spent for caregiving per week, as well as with behavior disturbances and ADL/IADL abilities. The salivary HHV-6 DNA levels may be added as a new biomarker for caregiver exhaustion. We concluded that fatigue assessments should be performed by not only a questionnaire, such as the CFS, but also by a biomarker search, such as HHV-6, when estimating the caregiver burden for family caregivers of people with dementia. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Invisible Care: Friend and Partner Care Among Older Lesbian, Gay, Bisexual, and Transgender (LGBT) Adults

PubMed Central

Shiu, Chengshi; Muraco, Anna; Fredriksen-Goldsen, Karen

2016-01-01

Objective Lesbian, gay, bisexual, and transgender (LGBT) older adult caregivers may encounter obstacles in obtaining health and aging services due to discrimination in service and legal systems. The caregiving relationships in LGBT communities also differ from the general population in that friends are providing a large portion of informal care. This article examines how the relational context of caregiving relates to caregiving demands and resources, which in turn, influence perceived stress and depressive symptomatology among older LGBT caregivers. Method Using data from the National Health, Aging, and Sexuality Study: Caring and Aging with Pride, this study examines 451 participants who are providing caregiving to partners and friends. Structural equation modeling was applied to estimate the associations among the caregiver–care recipient relationship and caregiving demands, resources, perceived stress, and depressive symptomatology. Results On average, as compared with those caring for partners, those who provided care to friends reported experiencing lower levels of caregiving demands and lower levels of social support. The lower caregiving demands correlated positively with both lower perceived stress and less severe depressive symptomatology; however, the lower levels of social support were related to higher perceived stress and higher depressive symptomatology. Conclusions Caregiving provided by friends, which has long been under recognized, plays an important role in the LGBT community. Because lower levels of caregiving demands are offset by less social support, LGBT friend-caregivers experience similar levels of perceived stress and depressive symptomatology to those providing care to spouses and partners. Policy and service reforms are needed to better acknowledge the continuum of informal caregiving relationships. PMID:28367277

Effectiveness of Needs-oriented Hospital Discharge Planning for Caregivers of Patients With Schizophrenia.

PubMed

Lin, Li-En; Lo, Su-Chen; Liu, Chieh-Yu; Chen, Shing-Chia; Wu, Wen-Cheng; Liu, Wen-I

2018-04-01

Hospital discharge planning for clients with schizophrenia reduces client rehospitalization rates and improves their medication adherence. The effectiveness of caregiver participation in hospital discharge planning has seldom been explored. The purpose of this study was to examine the effectiveness of caregiver participation in hospital discharge planning for clients with schizophrenia in reducing caregiver burden and improving health status. A quasi-experimental research design was adopted. The research location was in a psychiatric hospital in Northern Taiwan. The target population was caregivers of inpatients with schizophrenia. Nurses served as care coordinators and provided six-step hospital discharge planning services to caregivers. Structured questionnaires were employed to measure caregiver burden and health status. Intervention effect was tested using analysis of covariance in which outcome measure at pretest and selected demographic variables were treated as covariates. A total of 114 caregivers completed pretest and posttest evaluations, with 57 people in each group. A significant difference was found between the experimental and the control group regarding the caregiver burden and health status (P<0.001) The caregiver burden and health status of the experimental group improved more significantly compared with the control group. The caregiver-involved discharge planning process developed in this study effectively reduced the burden placed on caregivers and improved their health status. Mental health nurses can serve as the main care coordinators for assessment, planning, referral and provision of the required services. Caregiver-involved hospital discharge planning should become part of the routine care process. Copyright © 2017 Elsevier Inc. All rights reserved.

Open communication with terminally ill cancer patients about illness and death: a comparison between spouses of Ashkenazi and Sephardi ethnic origins.

PubMed

Bachner, Yaacov G; Yosef-Sela, Nili; Carmel, Sara

2014-01-01

Studies document that caregivers face severe difficulties in communicating with their loved ones about both illness and death. To date, a paucity of studies has examined caregiver-patient communication at the end of life within the context of ethnic origin. This study compares the level of open communication between caregivers from 2 ethnic groups and examines the contribution of different caregiver characteristics and situational variables to the explanation of open communication. A total of 77 spouse caregivers of terminally ill cancer patients (comprising 41 Jews of Sephardi origin and 36 Jews of Ashkenazi origin) participated in the study. The questionnaire included measures of caregiver communication, caregiver characteristics (ie, age, gender, education level, optimism, self-efficacy), and situational variables (ie, duration and intensity of care). Spouses of Ashkenazi origin communicated more with their loved ones about illness and death compared with their Sephardi counterparts. Ethnic origin accounted for 16.6% of the explained variance, caregiver characteristics added 20.3%, and situation variables lent a modest contribution of 3.5%. Four variables emerged as significant predictors of caregivers' level of open communication: self-efficacy (β = .33, P < .05), gender (β = .32, P < .01), ethnic origin (β = .25, P <.05), and duration of care (β = .20, P < .05). These findings demonstrate the importance of ethnic origin to caregivers' open communication with terminal cancer patients about illness and death. Moreover, communication level with patients is mostly explained by the caregiver characteristics. Caregiver characteristics should be considered by nurses when developing intervention programs for increasing caregivers' level of open communication with dying patients.

Impact of Behavioral Symptoms in Dementia Patients on Depression in Daughter and Daughter-in-Law Caregivers.

PubMed

Lee, Juwon; Sohn, Bo Kyung; Lee, Hyunjoo; Seong, Sujeong; Park, Soowon; Lee, Jun-Young

2017-01-01

One caregiver relationship that has been neglected in caregiver depression research is the daughter-in-law. Compared with Western countries, in which those who are closer in familial relationships such as the spouse or child usually take care of the patient, in many Asian countries, the daughter-in-law often assumes the caretaker role. However, not much research has been done on how this relationship may result in different caregiver outcomes. We sought to identify whether the association between patient characteristics and caregiver depressive symptoms differs according to the familial relationship between caregiver and patient. Ninety-five daughter (n = 47) and daughter-in-law (n = 48) caregivers of dementia patients were asked to report their own depressive symptoms and patient behavioral symptoms. Patients' cognitive abilities, daily activities, and global dementia ratings were obtained. Hierarchical linear regression was employed to determine predictors of depressive symptoms. Daughters-in-law had marginally higher depressive scores. After adjusting for caregiver and patient characteristics, in both groups, greater dependency in activities of daily living and more severe and frequent behavioral symptoms predicted higher caregiver depressive scores. However, greater severity and frequency of behavioral symptoms predicted depression to a greater degree in daughters compared with daughters-in-law. Although behavioral symptoms predicted depression in both caregiver groups, the association was much stronger for daughters. This suggests that the emotional relationship between the daughter and patient exacerbates the negative effect of behavioral symptoms on caregiver depression. The familial relationship between the caregiver and dementia patient should be considered in managing caregiver stress.

Perceived Stress and Coping Styles among Malay Caregivers of Children with Learning Disabilities in Kelantan

PubMed Central

Isa, Siti Nor Ismalina; Ishak, Ismarulyusda; Rahman, Azriani Ab; Saat, Nur Zakiah Mohd; Din, Normah Che; Lubis, Syarif Husin; Ismail, Muhammad Faiz Mohd

2017-01-01

Background Caregivers of children with learning disabilities have been shown to experience increased stress and greater negative caregiving consequences than those with typically developing children. There remains a lack of studies focusing on stress and coping mechanisms among caregivers of a wider age group and diagnosis of individuals with disabilities in Asian countries. The current study examines levels of perceived stress and associated child and caregiver factors among caregivers of children with learning disabilities in the Malaysian context. An additional aim was to determine whether caregiver coping styles may be predictors of perceived stress. Methods The Malay version of the Perceived Stress Scale with 10 items and the Brief COPE Scale were administered to a sample of 190 Malay caregivers of children with learning disabilities registered with community-based rehabilitation centres in Kelantan, a state in Peninsular Malaysia. Multiple linear regression analysis was applied to determine the predictors of perceived stress. Results The mean total perceived stress score of caregivers was 16.96 (SD = 4.66). The most frequently used coping styles found among caregivers included religion, acceptance and positive reframing, while substance use and behavioural disengagement were least frequently used. Higher perceived stress was significantly predicted among caregivers with fewer children, frequent use of instrumental support and behavioural disengagement coping, and lack of emotional support and religious coping. Conclusion Findings indicate that the perceived stress levels among caregivers were significantly predicted by different coping styles. It is vital to help the caregivers improve their good coping styles in order to reduce their stress levels. PMID:28381931

Randomized controlled trial of caregiver training for HIV-infected child neurodevelopment and caregiver well being.

PubMed

Bass, Judith K; Opoka, Robert; Familiar, Itziar; Nakasujja, Noeline; Sikorskii, Alla; Awadu, Jorem; Givon, Deborah; Shohet, Cilly; Murray, Sarah M; Augustinavicius, Jura; Mendelson, Tamar; Boivin, Michael

2017-08-24

HIV infection places children at neurodevelopmental risk; for young children in poverty, risk is compounded by compromised caregiving quality. The mediational intervention for sensitizing caregivers (MISC) program trained caregivers on fostering daily interactions with young children. We hypothesized that MISC could enhance neurodevelopment of rural Ugandan HIV-infected children and improve mental health outcomes of their caregivers, which might mediate improved caregiving quality. A randomized trial of HIV-infected young children (ages 2-5 years) and their female caregivers; cluster randomization was to MISC or a nutrition curriculum. A total of 18 geographic clusters in rural Uganda. Children and caregivers were evaluated at baseline, 6 months, 1 year, and 1-year post-training. Mullen Scales of Early Learning, the Color-Object Association Test for memory, the Early Childhood Vigilance Test of attention, and the Behavior Rating Inventory of Executive Function for the children. Caregivers completed measures of depression and anxiety symptoms and daily functioning. MISC had a significant impact on postintervention receptive language (adjusted mean difference = 3.13, 95% confidence interval 0.08, 6.18) that persisted at 1-year follow-up. MISC caregivers reported significantly less functional impairment postprogram (adjusted mean difference = -0.15, 95% confidence interval -0.28, -0.01). Other outcomes were NS. Both intervention conditions resulted in improvements in the study children over time. MISC showed additional impacts on child language and caregiver well-being. Future directions that include assessing the extent enhanced language development resulting from improved caregiving may better prepare impoverished children for school.

Canadian Alzheimer's disease caregiver survey: baby-boomer caregivers and burden of care.

PubMed

Black, Sandra E; Gauthier, Serge; Dalziel, William; Keren, Ron; Correia, Jane; Hew, Huong; Binder, Carin

2010-08-01

Alzheimer's disease (AD) burdens not only the person, but also the person's caregiver(s). This burden has been linked to negative health effects for caregivers. To that end, a survey of Canadian caregivers of persons with AD/other dementias was conducted to investigate the social, physical, psychological and financial impact of AD and/or dementia-related conditions on caregivers' quality of life. A web-based survey, the Canadian Alzheimer's Disease Caregiver survey, was made available through the Canadian Alzheimer's Society website and 50plus.com, an internet portal for baby boomers (BB) (people aged 50 years or older), as well as through HarrisDecima Research's e-Vox panel. A total of 398 individuals completed the survey between 15 September and 5 November 2006. Of the 398 total respondents, 221 were identified as baby boomers who provided care to an individual with AD/dementia. Respondents identified several areas of burden of care. These included negative effects on emotional health (such as increased depression, more stress and greater fatigue), financial costs and a need to change a working situation (e.g. by retiring early, reducing work hours or refusing a promotion). Caregivers of persons with AD/related dementia face important social, physical, psychological and financial pressures. These negatively affect the quality of life of caregivers with a significant increased burden being placed on live-in caregivers versus caregivers who do not co-reside with their care recipients. Interventions that address these pressures will not only improve the health and well-being of caregivers, but likely also the care of persons with AD/dementia.

Perceived Stress and Coping Styles among Malay Caregivers of Children with Learning Disabilities in Kelantan.

PubMed

Isa, Siti Nor Ismalina; Ishak, Ismarulyusda; Rahman, Azriani Ab; Saat, Nur Zakiah Mohd; Din, Normah Che; Lubis, Syarif Husin; Ismail, Muhammad Faiz Mohd

2017-03-01

Caregivers of children with learning disabilities have been shown to experience increased stress and greater negative caregiving consequences than those with typically developing children. There remains a lack of studies focusing on stress and coping mechanisms among caregivers of a wider age group and diagnosis of individuals with disabilities in Asian countries. The current study examines levels of perceived stress and associated child and caregiver factors among caregivers of children with learning disabilities in the Malaysian context. An additional aim was to determine whether caregiver coping styles may be predictors of perceived stress. The Malay version of the Perceived Stress Scale with 10 items and the Brief COPE Scale were administered to a sample of 190 Malay caregivers of children with learning disabilities registered with community-based rehabilitation centres in Kelantan, a state in Peninsular Malaysia. Multiple linear regression analysis was applied to determine the predictors of perceived stress. The mean total perceived stress score of caregivers was 16.96 (SD = 4.66). The most frequently used coping styles found among caregivers included religion, acceptance and positive reframing, while substance use and behavioural disengagement were least frequently used. Higher perceived stress was significantly predicted among caregivers with fewer children, frequent use of instrumental support and behavioural disengagement coping, and lack of emotional support and religious coping. Findings indicate that the perceived stress levels among caregivers were significantly predicted by different coping styles. It is vital to help the caregivers improve their good coping styles in order to reduce their stress levels.

Emotional reactivity to daily life stress in spousal caregivers of people with dementia: An experience sampling study

PubMed Central

2018-01-01

Introduction Caregivers differ in their emotional response when facing difficult situations during the caregiving process. Individual differences in vulnerabilities and resources could play an exacerbating or buffering role in caregivers’ reactivity to daily life stress. This study examines which caregiver characteristics modify emotional stress reactivity in dementia caregivers. Methods Thirty caregivers collected momentary data, as based on the experience sampling methodology, to assess (1) appraised subjective stress related to events and minor disturbances in daily life, and (2) emotional reactivity to these daily life stressors, conceptualized as changes in negative affect. Caregiver characteristics (i.e. vulnerabilities and resources) were administered retrospectively. Results Caregivers who more frequently used the coping strategies ‘seeking distraction’, ‘seeking social support’, and ‘fostering reassuring thoughts’ experienced less emotional reactivity towards stressful daily events. A higher educational level and a higher sense of competence and mastery lowered emotional reactivity towards minor disturbances in daily life. No effects were found for age, gender, and hours of care and contact with the person with dementia. Discussion Caregiver resources can impact emotional reactivity to daily life stress. Interventions aimed at empowerment of caregiver resources, such as sense of competence, mastery, and coping, could help to reduce stress reactivity in dementia caregivers. PMID:29617373

Caregivers who refuse preventive care for their children: the relationship between immunization and topical fluoride refusal.

PubMed

Chi, Donald L

2014-07-01

The aim of this study was to examine caregivers' refusal of preventive medical and dental care for children. Prevalence rates of topical fluoride refusal based on dental records and caregiver self-reports were estimated for children treated in 3 dental clinics in Washington State. A 60-item survey was administered to 1024 caregivers to evaluate the association between immunization and topical fluoride refusal. Modified Poisson regression models were used to estimate prevalence rate ratios (PRRs). The prevalence of topical fluoride refusal was 4.9% according to dental records and 12.7% according to caregiver self-reports. The rate of immunization refusal was 27.4%. In the regression models, immunization refusal was significantly associated with topical fluoride refusal (dental record PRR = 1.61; 95% confidence interval [CI] = 1.32, 1.96; P < .001; caregiver self-report PRR = 6.20; 95% CI = 3.21, 11.98; P < .001). Caregivers younger than 35 years were significantly more likely than older caregivers to refuse both immunizations and topical fluoride (P < .05). Caregiver refusal of immunizations is associated with topical fluoride refusal. Future research should identify the behavioral and social factors related to caregiver refusal of preventive care with the goal of developing multidisciplinary strategies to help caregivers make optimal preventive care decisions for children.

Relationships between Caregiving Stress, Depression, and Self-Esteem in Family Caregivers of Adults with a Disability

PubMed Central

2017-01-01

This study aimed to examine the relationships between caregiving stress, depression, and self-esteem of family caregivers of an adult person with a disability and to identify their effects on their caregiving burden. The study was performed with 108 care providers of adult people with a disability who visited hospital rehabilitation centers. Caregiving stress showed a significant positive correlation with depression and with economic and psychological stress, and it showed a significant negative correlation with self-esteem. When the care provider was aged, female, and without a job and the caregiving cost and time were higher, the caregiving stress was high. When the care provider was female and had a lower income, the depression index was high. When the person with a disability was male and in the forties and the level of disability was higher, the caregiving stress was high. When the disability was related to spinal cord damage, the care provider's depression index was the highest. To reduce caregiving stress and depression in the family caregivers and to improve their self-esteem, continuous support and help from specialists are necessary. Additionally, a variety of intervention programs need to be designed to motivate them to participate regularly at the community level. PMID:29114184

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

PubMed

Jokinen, Nancy; Gomiero, Tiziano; Watchman, Karen; Janicki, Matthew P; Hogan, Mary; Larsen, Frode; Beránková, Anna; Heloísa Santos, Flávia; Service, Kathy; Crowe, Jim

2018-01-01

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

Characteristics and Concerns of Caregivers of Adults With Traumatic Brain Injury.

PubMed

Powell, Janet M; Wise, Elizabeth K; Brockway, Jo Ann; Fraser, Robert; Temkin, Nancy; Bell, Kathleen R

To describe the characteristics of caregivers of adults with traumatic brain injury (TBI) and their concerns in the first months after community discharge of the TBI survivor. Secondary analysis of data collected during a parallel-group randomized controlled trial. Community. A total of 153 consecutively enrolled caregivers of adults with moderate to severe TBI discharged to the community following acute and/or rehabilitation care at a Level I trauma center with 71 caregivers in the treatment group identifying concerns as part of the intervention procedures. Caregiver demographics, caregiver-survivor relationship characteristics, caregiver activity changes, and concerns targeted by caregivers for education and problem-solving via biweekly phone calls. Thirty-nine percent of caregivers were spouses and 35% parents. Sixty-five percent lived in the same house as the survivor preinjury with 86% in touch daily to several times per week. Concerns targeted by more than one-third of caregivers related to managing their emotional adjustment, strategies for getting things done, managing survivor emotions and behaviors, and engaging in healthful habits. Caregivers of TBI survivors targeted personal concerns relating to their own emotional adjustment and participation as well as concerns relating to symptoms and recovery of the TBI survivor to address through education and problem-solving.

Does caregiver well-being predict stroke survivor depressive symptoms? A mediation analysis.

PubMed

Grant, Joan S; Clay, Olivio J; Keltner, Norman L; Haley, William E; Wadley, Virginia G; Perkins, Martinique M; Roth, David L

2013-01-01

Studies suggest that family caregiver well-being (ie, depressive symptoms and life satisfaction) may affect stroke survivor depressive symptoms. We used mediation analysis to assess whether caregiver well-being might be a factor explaining stroke survivor depressive symptoms, after controlling for demographic factors and stroke survivor impairments and problems. Caregiver/stroke participant dyads (N = 146) completed measures of stroke survivor impairments and problems and depressive symptoms and caregiver depressive symptoms and life satisfaction. Mediation analysis was used to examine whether caregiver well-being mediated the relationship between stroke survivor impairments and problems and stroke survivor depressive symptoms. As expected, more stroke survivor problems and impairments were associated with higher levels of stroke survivor depressive symptoms (P < .0001). After controlling for demographic factors, we found that this relationship was partially mediated by caregiver life satisfaction (29.29%) and caregiver depressive symptoms (32.95%). Although these measures combined to account for 40.50% of the relationship between survivor problems and impairments and depressive symptoms, the direct effect remained significant. Findings indicate that stroke survivor impairments and problems may affect family caregivers and stroke survivors and a high level of caregiver distress may result in poorer outcomes for stroke survivors. Results highlight the likely importance of intervening with both stroke survivors and family caregivers to optimize recovery after stroke.

Physical and emotional well-being and support in newly diagnosed head and neck cancer patient-caregiver dyads.

PubMed

Sterba, Katherine R; Zapka, Jane; Armeson, Kent E; Shirai, Keisuke; Buchanan, Amy; Day, Terry A; Alberg, Anthony J

2017-01-01

The purpose of this study was to examine the physical and emotional well-being and social support in newly diagnosed head and neck cancer (HNC) patients and caregivers and identify sociodemographic, clinical, and behavioral risk factors associated with compromised well-being in patients and caregivers. Newly diagnosed HNC patients and their primary caregivers (N = 72 dyads) completed questionnaires before treatment assessing physical and mental well-being, depression, cancer worry, and open-ended support questions. Patients reported worse physical well-being than caregivers (p < 0.05) but similar levels of mental well-being. Caregivers reported providing emotional and instrumental support most frequently with an emphasis on nutrition and assistance with speech, appearance, and addictions. Both patients and their caregivers reported suboptimal mental well-being and depression. Smoking was associated with compromised well-being in patients, caregivers, and dyads. Compromised well-being in patients and their caregivers was more likely when patients were younger, had worse symptoms, and smoked/consumed alcohol (p < 0.05). While patients face more physical strain than caregivers, both equally confront emotional challenges. Results highlight risk factors for compromised well-being in both patients and their caregivers that should be assessed at diagnosis to guide identification of needed dyadic-focused supportive care resources.

Caregivers Create a Veteran-Centric Community in VHA Medical Foster Homes.

PubMed

Haverhals, Leah M; Manheim, Chelsea E; Gilman, Carrie V; Jones, Jacqueline; Levy, Cari

2016-01-01

The Veteran's Health Administration's Medical Foster Home program offers a unique long-term care option for veterans who require nursing-home- or assisted-living-level care. Veterans in a medical foster home reside with community-based caregivers who provide 24-hr-a-day care and monitoring. The veterans often remain in the medical foster home until end of life. Support and oversight is provided to the caregiver from the Veteran's Health Administration's community-based medical team. This qualitative descriptive study is based on secondary analysis of interviews with 20 medical foster home caregivers from 7 programs across the United States. The study's research aims are to describe and explain (a) the type of care backgrounds and skills these caregivers possess, (b) caregivers' primary motivations to open their homes to veterans who often have complex medical and social needs, and (c) how caregivers function in their role as primary caregiver for veterans. Findings indicated that caregivers interviewed had worked in long-term care settings and/or cared for family members. A strong desire to serve veterans was a primary motivation for caregivers, rather than financial gain. The caregivers' long-term care skills aided them in building and sustaining the unique medical foster home family-like community.

Family caregivers' opinions about interaction with the environment in consciousness disorders.

PubMed

Moretta, Pasquale; Trojano, Luigi; Masotta, Orsola; Cardinale, Viviana; Loreto, Vincenzo; Estraneo, Anna

2017-05-01

To assess family caregivers' opinions about level of interaction with the environment in their relatives with disorders of consciousness (DOCs) and to explore psychological features of caregivers whose opinions diverge from clinicians' diagnosis. Forty-five family caregivers of 38 DOC inpatients without communication abilities answered 2 questions assessing their opinion about level of interaction with the environment in their relatives. Self-report questionnaires were used to evaluate caregivers' depression, anxiety, psychophysiological disturbances, prolonged grief disorder, coping strategies, quality of perceived needs and social support. Fifteen caregivers (5 relatives of patients in vegetative state and 10 of patients in minimally conscious state) considered their relatives able to communicate, in contrast with clinical diagnosis. These caregivers had significantly higher depressive symptoms, and higher worries about possible death of their relatives with respect to the remaining caregivers. Caregivers of DOC patients detected some interaction with the environment in their relatives more often than care professionals. This is likely related to caregivers' beliefs and expectations, but is also based on observations closer and longer than those possible for physicians. These considerations are important to build a therapeutic alliance with caregivers and to involve them in the diagnostic process and rehabilitative program. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

A conceptual framework of outcomes for caregivers of assistive technology users.

PubMed

Demers, Louise; Fuhrer, Marcus J; Jutai, Jeffrey; Lenker, James; Depa, Malgorzata; De Ruyter, Frank

2009-08-01

To develop and validate the content of a conceptual framework concerning outcomes for caregivers whose recipients are assistive technology users. The study was designed in four stages. First, a list of potential key variables relevant to the caregivers of assistive technology users was generated from a review of the existing literature and semistructured interviews with caregivers. Second, the variables were analyzed, regrouped, and partitioned, using a conceptual mapping approach. Third, the key areas were anchored in a general stress model of caregiving. Finally, the judgments of rehabilitation experts were used to evaluate the conceptual framework. An important result of this study is the identification of a complex set of variables that need to be considered when examining the experience of caregivers of assistive technology users. Stressors, such as types of assistance, number of tasks, and physical effort, are predominant contributors to caregiver outcomes along with caregivers' personal resources acting as mediating factors (intervening variables) and assistive technology acting as a key moderating factor (effect modifier variable). Recipients' use of assistive technology can enhance caregivers' well being because of its potential for alleviating a number of stressors associated with caregiving. Viewed as a whole, this work demonstrates that the assistive technology experience of caregivers has many facets that merit the attention of outcomes researchers.

Subjective burden among spousal and adult-child informal caregivers of older adults: results from a longitudinal cohort study.

PubMed

Oldenkamp, Marloes; Hagedoorn, Mariët; Slaets, Joris; Stolk, Ronald; Wittek, Rafael; Smidt, Nynke

2016-12-07

Pressures on informal caregivers are likely to increase due to increasing life expectancy and health care costs, which stresses the importance of prevention of subjective burden. The present study examined the correlates of overall subjective burden and multiple burden dimensions among spousal and adult-child caregivers of Dutch older adults, both cross-sectional and longitudinal (12-months follow-up). In 2010 and 2011 baseline and follow-up data was collected in a sample of informal caregivers and care recipients in the Northern provinces of the Netherlands. Subjective burden included 7 burden dimensions and a summary score for overall subjective burden, based on the Care-Related Quality of Life Instrument (CarerQoL-7D). Objective stressors were the time investment in caregiving (hours of household care, personal care, practical care) and the health situation of the care recipient, including multimorbidity, functional limitations (Katz Index of Independence Basic Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL), and cognitive functioning problems (EQ-5D + C). Correlates of subjective burden were evaluated with linear and logistic regression analyses. The sample consisted of 356 caregivers at baseline (43% spousal, 57% adult-child caregivers), and 158 caregivers at follow-up (45% spousal, 55% adult-child caregivers). At baseline and follow-up, spousal caregivers experienced a higher overall subjective burden, and reported more often mental health problems, physical health problems, and problems with combining daily activities, compared to adult-child caregivers. For spousal caregivers, a poorer health situation of the care recipient was associated with higher subjective burden, while adult-child caregivers reported higher levels of subjective burden when their time investment in caregiving was high. Subjective burden at follow-up was mainly explained by baseline subjective burden. These results indicate that for effective caregiver support, it is crucial to take the type of care relationship into account, since the level and correlates of overall subjective burden and burden dimensions varied for spousal and adult-child caregivers. In addition, reducing subjective burden will also positively impact the subjective burden over time.

Quality of life discordance between terminal cancer patients and family caregivers: a multicenter study.

PubMed

Lee, Yong Joo; Kim, Jung Eun; Choi, Youn Seon; Hwang, In Cheol; Hwang, Sun Wook; Kim, Young Sung; Kim, Hyo Min; Ahn, Hong Yup; Kim, So Jin

2016-07-01

Research studies on quality of life (QOL) discordance between cancer patients and family caregivers are limited, and the results are inconsistent. The objective of this study was to examine QOL discordance between patients and family caregivers in a hospice setting and to identify factors associated with the discordance. We enrolled 178 patient-family caregiver pairs from six tertiary hospital hospice palliative care units in South Korea in this cross-sectional study. To establish groupings based on patient and family caregiver QOL levels, we measured the QOL of patient and family caregiver pairs using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 for Palliative Care and the Caregiver QOL Index-Cancer, respectively. Pairs were categorized into the following three groups: both good QOL pairs, only poor patient QOL, and only poor family caregiver QOL. Factors associated with only poor patient or only poor family caregiver QOL were compared to both good QOL pairs. A stepwise multivariate regression model was used to identify relevant factors. The QOL of family caregivers did not correlate significantly (P = 0.227) with QOL in terminally ill cancer patients. As well, poor emotional function in patients was the only significant factor associated with the only poor patient QOL group [adjusted odds ratio (aOR), 4.1; 95 % confidence interval (CI), 1.5-11.5]. However, emotionally distressed family caregivers (aOR, 10.2; 95 % CI, 2.8-37.5), family caregivers who professed a religion (aOR, 4.1; 95 % CI, 1.5-11.3), and family caregivers with low social support (aOR, 3.9; 95 % CI, 1.5-10.6) were independent predictors for the only poor family caregiver QOL group. Assessing the respective emotional status of both the patient and family caregiver is needed in hospice care to reduce the gap in QOL between the two groups. Further, more attention should be paid to the lack of social support for family caregivers.

Combined life satisfaction of persons with stroke and their caregivers: associations with caregiver burden and the impact of stroke

PubMed Central

2011-01-01

Background Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. Methods In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS). Results The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. Conclusions Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings support the importance of a dyadic perspective and add to the understanding of the reciprocal influences between the caregiver and recipient. This knowledge has clinical implications and contributes to the identification of possible vulnerable dyads in need of tailored support. PMID:21223594

An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

PubMed Central

2011-01-01

Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time. Methods Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research. Results The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden) and care recipient physical and health care use outcomes. Conclusions Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient outcomes, including considering whether expanding to economic status and health care use of the caregiver can be accommodated, to ease subsequent economic evaluations of caregiving. Third, intervention studies should measure a common set of outcomes to facilitate cross-time and cross-study comparisons of effectiveness. PMID:22107600

Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol.

PubMed

Rosell-Murphy, Magdalena; Bonet-Simó, Josep M; Baena, Esther; Prieto, Gemma; Bellerino, Eva; Solé, Francesc; Rubio, Montserrat; Krier, Ilona; Torres, Pascuala; Mimoso, Sonia

2014-03-25

Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). Primary Health Care network (9 PHCTs). Primary informal caregivers of patients receiving home health care from participating PHCTs. Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data, Goldberg Scale, Apgar family questionnaire, Holmes and Rahe Psychosocial Stress Scale, number of chronic diseases. b) Dependent patient: sociodemographic data, level of dependency (Barthel Index), cognitive impairment (Pfeiffer test). If the intervention intended to improve social and family support is effective in reducing the burden on primary informal caregivers of dependent patients, this model can be readily applied throughout usual PHCT clinical practice. Clinical trials registrar: NCT02065427.

Complaints of informal caregivers providing home care for dementia patients: the Pixel study.

PubMed

Thomas, Philippe; Chantoin-Merlet, Stéphanie; Hazif-Thomas, Cyril; Belmin, Joël; Montagne, Bernard; Clément, Jean-Pierre; Lebruchec, Marianne; Billon, Rémy

2002-11-01

Prospective study of the complaints, problems and requirements of the main caregiver providing home care for dementia patients. To determine the complaints of home caregivers, how they are interrelated and what causes them. Self-administered questionnaire of 42 questions on the patient and caregiver, including a list of complaints, given to the main caregiver. Medical questionnaire on the patient filled in by the attending physician, usually a specialist, freelance or salaried doctor. 408 sets of records were compiled, concerning 236 demented women (77.1 +/- 0.47 years) and 172 demented men (75.7 +/- 0.57 years). In two-thirds of cases, the main caregiver was a woman aged 60.6 +/- 0.79 years. Female caregivers were more vulnerable than male caregivers. The most frequent caregiver complaint, regardless of the stage of the disease, concerned loss of motivation and withdrawal. The patient's awareness of the disorder was accompanied by a reduction in motor dysfunction and aggressiveness, but associated with a higher frequency of the complaint regarding loss of motivation reported by the caregiver. The caregivers' problems concerned mainly the absence of relief and the impossibility of having any time to themselves. Caregivers' requests for information concerned medical information, care structures and day care facilities. The attending physician comes into close contact with the patient, but must take into account the patient's environment. The physician can provides a separate analysis to the caregiver and does not completely answer to certain family questions or needs. He or she is not the family's prime source of information. The caregivers' requirements relate to the areas that are the attending physician's responsibility: the development and characteristics of the disease. The caregiver is anxious about the patient's future and is trapped by his or her involvement in the care, suffering greatly from the lack of relief. It is necessary to change the focus of home care for dementia patients to fit the context in which they live and to allow for periods of relief for home caregivers. Copyright 2002 John Wiley & Sons, Ltd.

Cumulative stress and substantiated maltreatment: the importance of caregiver vulnerability and adult partner violence.

PubMed

Wekerle, Christine; Wall, Anne-Marie; Leung, Eman; Trocmé, Nico

2007-04-01

Our goal is to assess the effect of caregiver vulnerabilities, singly and in combination, on the substantiation of child abuse (physical, sexual) and neglect, while controlling for relevant background variables. We test the moderator role of adult partner violence in qualifying the relationship between caregiver vulnerabilities and maltreatment substantiation. Secondary analyses of the 1998 Canadian Incidence Study of Reported Child Maltreatment (CIS) are used to predict child protective service investigation substantiation versus non-substantiation from a range of caregiver vulnerability factors. Involvement in partner violence was examined as a moderator in the relation between caregiver vulnerabilities and maltreatment substantiation. The CIS is an epidemiological survey of first-reported cases to child protective services, using a random sample of child welfare agencies across Canada. Child welfare workers completed a research form on the child, primary caregiver, family, perpetrator, severity and type of maltreatment, as well as services and court outcomes. All maltreatment classifications were assigned according to the Canadian legal definition of child abuse and neglect. Hierarchical logistic regression analyses were used, with stepped entry of: (1) demographic factors, socioeconomic disadvantage, and caregiver's own history of maltreatment; (2) caregiver vulnerability factors; (3) involvement in partner violence; (4) the interaction between caregiver vulnerability and partner violence. Caregiver substance abuse was found to be the single most potent kind of caregiver vulnerability in predicting maltreatment substantiation. When the total number of vulnerabilities was used as the predictor, prediction across all types of maltreatment increased, especially for substantiated neglect. Analyses also showed that the presence of partner violence in the home exacerbated the effect of caregiver vulnerability on substantiation. The total number of caregiver vulnerabilities was the best predictor of the substantiation of child abuse and neglect. This relationship was moderated by the existence of partner violence: high caregiver vulnerability and high partner violence increased the likelihood of substantiation versus non-substantiation. These results suggest that caregiver issues should be considered in tandem with partner relationships. Among child welfare cases, caregiver vulnerability and partner violence are critical targets for child maltreatment prevention and early child protective services intervention.

Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers

PubMed Central

Brady, Erin; Wilkerson, David; Yi, Eun-Hye; Karanam, Yamini; Callahan, Christopher M

2017-01-01

Background In the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers. Objective The primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants’ social networks. The study’s secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers. Methods We recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants’ Facebook News Feed, allowing participants’ Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers. Results In total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%). Conclusions We found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers’ self-efficacy, sense of support, and perceived stress, but these results were not statistically significant. Both friendsourced and crowdsourced answers may be an acceptable way to provide informational and emotional support to caregivers of people with AD. PMID:28396304

Caregiver Mental Health and Potentially Harmful Caregiving Behavior: The Central Role of Caregiver Anger

ERIC Educational Resources Information Center

MacNeil, Gordon; Kosberg, Jordan I.; Durkin, Daniel W.; Dooley, W. Keith; DeCoster, Jamie; Williamson, Gail M.

2010-01-01

Purpose: Caregivers feeling stress and experiencing mental health problems can be at risk for engaging in abusive acts against elderly care recipients. Potentially harmful behavior (PHB) was used as a measure of caregivers' engagement in, or fear of engagement in, behavior that places dependent care recipients at risk of physical and/or…

Spousal Caregivers of Persons with Alzheimer's and Parkinson's Disease Dementia: A Preliminary Comparison.

ERIC Educational Resources Information Center

Dura, Jason R.; And Others

1990-01-01

Compared self- and other-rated depression in spousal caregivers for 23 Alzheimer's patients, 23 Parkinsons' Disease patients, and 23 control subjects. Two caregiver groups were similar in length of time they had been giving care and in caregiver distress and both caregiver groups were more depressed than control subjects. (Author/NB)

Caregiving for Dementia in Family Members: Caregiving Burden and Prospects for Effective Intervention.

ERIC Educational Resources Information Center

Maiden, Robert J.; And Others

Caring for a family member with dementia is a major source of stress for the caregiver. To assess the impact of caring for an impaired family member and to evaluate the effectiveness of intervention programs, 34 caregivers of relatives with dementia completed an amended form of the Philadelphia Geriatric Center's Caregiver Survey and two…

Child-Centered Behaviors of Caregivers with 12-Month-Old Infants: Associations with Passive Joint Engagement and Later Language

ERIC Educational Resources Information Center

Trautman, Carol Hamer; Rollins, Pamela Rosenthal

2006-01-01

This study investigates three aspects of social communication in 12-month-old infants and their caregivers: (a) caregiver conversational style, (b) caregiver gesture, and (c) infant engagement. Differences in caregiver behavior during passive joint engagement were associated with language outcomes. Although total mean duration of infant time in…

Caregiver Statistics: Demographics

MedlinePlus

... 20 Arno, P. S., Well Being of Caregivers: The Economic Issues of Caregivers, in T. McRae (Chair), New ... Institute (2011) Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving 45 Doty, P. Cost- ...

Caregiver informational support in different patient care settings at end of life.

PubMed

Lavalley, Susan A

2018-01-01

Caregivers of the terminally ill face many complicated tasks including providing direct patient care, communicating with clinicians, and managing the logistical demands of daily activities. They require instructive information at all points in the illness process and across several settings where patients receive end-of-life care. This study examines how the setting where a patient receives end-of-life care affects caregivers' informational support needs by thematically analyzing data from caregiver interviews and clinical observations. Caregivers providing care for patients at home received informational support related to meeting patients' mobility, medication, and nutritional needs. Caregivers who provided care remotely received informational support to navigate transitions between patient care settings or long-term care arrangements, including financial considerations and insurance logistics. The findings document that interventions designed to enhance information for caregivers should account for caregiving context and that health care providers should proactively and repeatedly assess caregiver information needs related to end-of-life patient care.

Caregiver Burden, Care Recipient Depressive Symptomology, and Social Exchange: Does Race Matter?

PubMed

Ejem, Deborah; Bauldry, Shawn; Bakitas, Marie; Drentea, Patricia

2018-04-01

Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279). Using ordinal logistic regression, we found that higher caregiver-reported objective burden was associated with higher care recipient depressive symptoms ( P < .05), an association that was stronger for blacks. Interestingly, despite significant levels of objective burden, there was an association between lower depressive symptoms in black care recipients when there was an exchange of the social good "helpful company" with a caregiver. These findings illustrate the importance of supporting reciprocal exchange as a promising component of maintaining balanced caregiver-care recipient relationships among black older adults and their informal caregivers.

Burden, resilience and coping in caregivers of patients with interstitial lung disease.

PubMed

Shah, R J; Collard, H R; Morisset, J

Prior work has described the experience of caregiving in idiopathic pulmonary fibrosis, but the effect on caregivers in interstitial lung disease (ILD) has not been explored. Describe the burden, resilience, and health related quality of life (HRQoL) of caregivers of people with ILD. In a mixed methods study, ILD caregivers completed questionnaires and participated in focus groups. A qualitative thematic analysis of the focus group transcripts was conducted. Thirty seven caregivers completed the survey, and 15 participated in the focus groups. 65% were female; the average age was 66 (SD = 13). The mean Short Form-36 role emotional and mental health scores were 18 (SD = 4) and 46 (SD = 7). The focus groups identified 4 major themes: emotional burden, changes in relationship, coping strategies, and unmet needs of caregivers. Caregiving for patients with ILD significantly impairs HRQoL, particularly, emotional health. Increasing resources could improve the caregiving experience in ILD. Copyright © 2018 Elsevier Inc. All rights reserved.

Biomarkers of Resilience in Stress Reduction for Caregivers of Alzheimer's Patients.

PubMed

Ho, Lap; Bloom, Patricia A; Vega, Joan G; Yemul, Shrishailam; Zhao, Wei; Ward, Libby; Savage, Evan; Rooney, Robert; Patel, Divyen H; Pasinetti, Giulio Maria

2016-06-01

Caregiving for a dementia patient is associated with increased risk of psychological and physical health problems. We investigated whether a mindfulness-based stress reduction (MBSR) training course for caregivers that closely models the MBSR curriculum originally established by the Center of Mindfulness at the University of Massachusetts may improve the psychological resilience of non-professional caregivers of Alzheimer's disease patients. Twenty adult non-professional caregivers of dementia patients participated in an 8-week MBSR training course. Caregiver stress, depression, burden, grief, and gene expression profiles of blood mononuclear cells were assessed at baseline and following MBSR. MBSR training significantly improved the psychological resilience of some of the caregivers. We identified predictive biomarkers whose expression is associated with the likelihood of caregivers to benefit from MBSR, and biomarkers whose expression is associated with MBSR psychological benefits. Our biomarker studies provide insight into the mechanisms of health benefits of MBSR and a basis for developing a personalized medicine approach for applying MBSR for promoting psychological and cognitive resilience in caregivers of dementia patients.

Caregivers' resilience is independent from the clinical symptoms of dementia.

PubMed

Dias, Rachel; Simões-Neto, José Pedro; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Baptista, Maria Alice Tourinho; Lacerda, Isabel Barbeito; Kimura, Nathalia Ramos Santos; Dourado, Marcia Cristina Nascimento

2016-12-01

Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p < 0.01) and inversely associated with their depressive symptoms (p < 0.01). There was no relationship between caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

"I Treat Him as a Normal Patient": Unveiling the Normalization Coping Strategy Among Formal Caregivers of Persons With Dementia and Its Implications for Person-Centered Care.

PubMed

Bentwich, Miriam Ethel; Dickman, Nomy; Oberman, Amitai; Bokek-Cohen, Ya'arit

2017-11-01

Currently, 47 million people have dementia, worldwide, often requiring paid care by formal caregivers. Research regarding family caregivers suggests normalization as a model for coping with negative emotional outcomes in caring for a person with dementia (PWD). The study aims to explore whether normalization coping mechanism exists among formal caregivers, reveal differences in its application among cross-cultural caregivers, and examine how this coping mechanism may be related to implementing person-centered care for PWDs. Content analysis of interviews with 20 formal caregivers from three cultural groups (Jews born in Israel [JI], Arabs born in Israel [AI], Russian immigrants [RI]), attending to PWDs. We extracted five normalization modes, revealing AI caregivers had substantially more utterances of normalization expressions than their colleagues. The normalization modes most commonly expressed by AI caregivers relate to the personhood of PWDs. These normalization modes may enhance formal caregivers' ability to employ person-centered care.

Assessing the Impact of Atopic Dermatitis on the Patients' Parents with the Visual Instrument 'Caregiver-PRISM'.

PubMed

Marinello, Elena; Linder, Dennis; Spoto, Andrea; Palmer, Katie; Rohrer, Peter Michael; Büchi, Stefan; Trapp, Michael; Trapp, Eva-Maria; Hoerlesberger, Nina; Piaserico, Stefano; Peserico, Andrea; Gatta, Michela; Belloni Fortina, Anna

2016-01-01

There is a need to improve the quality of communication between clinicians and parents of young patients with atopic eczema (AE). To create a tool to measure the suffering that caregivers experience in association with their child's AE (Caregiver Pictorial Representation of Illness and Self-Measure, Caregiver-PRISM), assess the validity and reliability, and identify factors associated with caregiver suffering. Caregiver-PRISM was administered to 45 parents of patients from an AE outpatient service (Padua, Italy). Caregiver-PRISM had a good test-retest reliability (r = 0.85; t7 = 4.13; p < 0.05), content validity and construct validity when used in parents of AE children. Parents with a less positive family affective climate, higher education, or with children following a diet experienced higher suffering associated with their child's AE, demonstrated by lower Caregiver-PRISM scores (p < 0.05). Our results support the use of Caregiver-PRISM in parents of AE patients to assess suffering associated with patients' illness. © 2016 S. Karger AG, Basel.

The influence of Hispanic ethnicity on parent-provider communication about asthma.

PubMed

Carlin, Courtney; Yee, Alison B; Fagnano, Maria; Halterman, Jill S

2014-04-01

Research has shown that minority caregivers of children with asthma report poorer communication with health care providers than nonminority caregivers. Less is known about the specific influence of Hispanic ethnicity on parent-provider communication. Our objective was to evaluate the influence of Hispanic ethnicity on parent-provider communication regarding their child's asthma and on caregiver confidence in communicating with their child's provider at a primary care visit. Data were obtained from 166 caregivers of children (2-12 years) with persistent asthma. Caregiver perceptions of provider communication and confidence were evaluated. We found that Hispanic compared to non-Hispanic caregivers reported better communication with providers on several items. Hispanic caregivers also were more likely to indicate full confidence in their ability to communicate with providers. These findings suggest Hispanic caregivers may experience better parent-provider communication than non-Hispanics. Further investigation is needed to assess provider- and clinic-specific factors that may influence communication between minority caregivers and providers.

"Mad or bad?": burden on caregivers of patients with personality disorders.

PubMed

Bauer, Rita; Döring, Antje; Schmidt, Tanja; Spießl, Hermann

2012-12-01

The burden on caregivers of patients with personality disorders is often greatly underestimated or completely disregarded. Possibilities for caregiver support have rarely been assessed. Thirty interviews were conducted with caregivers of such patients to assess illness-related burden. Responses were analyzed with a mixed method of qualitative and quantitative analysis in a sequential design. Patient and caregiver data, including sociodemographic and disease-related variables, were evaluated with regression analysis and regression trees. Caregiver statements (n = 404) were summarized into 44 global statements. The most frequent global statements were worries about the burden on other family members (70.0%), poor cooperation with clinical centers and other institutions (60.0%), financial burden (56.7%), worry about the patient's future (53.3%), and dissatisfaction with the patient's treatment and rehabilitation (53.3%). Linear regression and regression tree analysis identified predictors for more burdened caregivers. Caregivers of patients with personality disorders experience a variety of burdens, some disorder specific. Yet these caregivers often receive little attention or support.

Caregiver Training in Mindfulness-Based Positive Behavior Supports (MBPBS): Effects on Caregivers and Adults with Intellectual and Developmental Disabilities

PubMed Central

Singh, Nirbhay N.; Lancioni, Giulio E.; Karazsia, Bryan T.; Myers, Rachel E.

2016-01-01

Caregivers often manage the aggressive behavior of individuals with intellectual and developmental disabilities that reside in community group homes. Sometimes this results in adverse outcomes for both the caregivers and the care recipients. We provided a 7-day intensive Mindfulness-Based Positive Behavior Support (MBPBS) training to caregivers from community group homes and assessed the outcomes in terms of caregiver variables, individuals’ behaviors, and an administrative outcome. When compared to pre-MBPBS training, the MBPBS training resulted in the caregivers using significantly less physical restraints, and staff stress and staff turnover were considerably reduced. The frequency of injury to caregivers and peers caused by the individuals was significantly reduced. A benefit-cost analysis showed substantial financial savings due to staff participation in the MBPBS program. This study provides further proof-of-concept for the effectiveness of MBPBS training for caregivers, and strengthens the call for training staff in mindfulness meditation. PMID:26903906

Is salivary pH a marker of depression among older spousal caregivers for cancer patients?

PubMed

Khalaila, Rabia; Cohen, Miri; Zidan, Jamal

2014-01-01

The pH in saliva, which decreases due to the activation of the sympathetic nervous system, may serve as a biomarker of psychological distress in caregivers but has rarely been studied in this context. The aims are to examine the levels of salivary pH as a possible biomarker of depression among caregivers and whether depression mediates the association between caregiving status (cancer caregivers vs. non-cancer caregivers) and pH levels. Cross-sectional data were collected from 68 consecutive-sampled spouses of cancer patients, and 42 age-matched individuals. Lower levels of pH saliva were found among caregivers of cancer patients than in the comparison group. Being a caregiver, poor subjective health, higher depression, and lower mastery predicted lower pH levels. In addition, depression mediated the associations of mastery with pH levels. The study provides preliminary evidence that salivary pH may serve as an easily tested indicator of the stress of caregiving and its related depression.

Child’s Autism Severity: Effect on West Virginia Caregiver Satisfaction with School Services

PubMed Central

Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2016-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child’s autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR’s from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child’s autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child’s Individualized Education Program (IEP) and evaluation of caregiver satisfaction with the IEP. PMID:25643472

Child's autism severity: effect on West Virginia caregiver satisfaction with school services.

PubMed

Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2014-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child's autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR's from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child's autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child's Individualized Education Program(IEP) and evaluation of caregiver satisfaction with the IEP.