Martire, Lynn M.; Schulz, Richard; Reynolds, Charles F.; Karp, Jordan F.; Gildengers, Ariel G.; Whyte, Ellen M.
Objectives To describe the burden experienced by family caregivers of older adults with depression and to examine the positive effects on caregivers of treating late-life depression. Design Two-phase treatment study for major depressive disorder (MDD) that included 6 weeks of open treatment with antidepressant medication for all older patients followed by 16 weeks of randomized treatment for patients who were partial responders, comparing a combination of medication and interpersonal psychotherapy with medication alone. Setting Primary care and university late-life mental health research clinic. Participants Adults aged 60 and older participating in a randomized trial for treatment of MDD who enrolled in a family caregiver study and their caregiver (N = 244 dyads). Measurements Improvement in patient symptoms during open treatment (lower scores on the Hamilton Rating Scale for Depression (HRSD)) and remission of depression during randomized treatment (3 consecutive weekly HRSD scores of ≤7) were examined as predictors of lower general caregiver burden and burden specific to patient depression. Results Caregivers reported a moderate to high level of general caregiver burden on average. Change in patient depression during open treatment was associated with significantly decreased depression-specific burden (β = −0.22, P =.001) and a trend toward lower general burden (β = − 0.08, P =.08). Caregivers of patients who remitted showed significantly decreased depression-specific burden (F (1,76) = 4.27, P =.04). Conclusion Treatment of late-life depression has benefits that extend to the family members on whom patients depend. Caregiver education and support may strengthen these effects. PMID:19943833
Novak, Mark; Guest, Carol
Developed 24-item, 5-subscale Caregiver Burden Inventory (CBI) as useful diagnostic tool for professional caregivers. Administered CBI to 107 caregivers of cognitively impaired older people. Individual cases illustrated that caregivers with same total burden scores can have markedly different patterns of burden and different social and…
Mashayekhi, Fatemeh; Pilevarzadeh, Motahareh; Rafati, Foozieh
Background: Chronic renal failure is among the chronic disease which due to persistence of the disease and long treatment process has various effects on the physiological, psychological, functional ability, lifestyle changes, and independence status of the patient and his family. This may result in the burden feeling in caregivers. According to the importance of the subject, this study is to assess the level of caregiver burden in caregivers of hemodialysis patients. Methods: This is a cross-sectional analytical descriptive study that was conducted in 2014 on the caregivers of hemodialysis patients. Research instruments were consisted of two parts: demographic data check list and caregiver burden questionnaire. Data were analyzed by SPSS statistical software and Pearson correlation coefficient tests. A p value of less than 0.05 was considered statistically significant. Results: In this study, 72.5% of caregivers reported moderate to severe levels of caregiver burden. A significant relationship was observed between gender of the patient with caregiver burden score of (p=0.031) and type of the income with caregiver burden score of (p=0.000). Caregivers of male patients and patients with inadequate income had a higher caregiver burden score. Conclusions: Our results showed that more than half of the caregivers of hemodialysis patients had moderate to severe levels of caregiver burden, therefore it is worthy that health officials and nurses pay special attention to this issue by communicating with these patients and their caregivers. PMID:26622201
Kang, Hyo Shin; Myung, Woojae; Na, Duk L.; Kim, Seong Yoon; Lee, Jae-Hong; Han, Seol-Heui; Choi, Seong Hye; Kim, SangYun; Kim, Seonwoo
Objective Caregivers for patients with Alzheimer's disease (AD) suffer from psychological and financial burdens. However, the results of the relationship between burden and cognitive function, performance of activities of daily living, and depressive symptoms have remained inconsistent. Therefore, the aim of this study was to examine which factors are more significant predictors of heightened burden, cognitive impairment or functional decline, besides neuropsychiatric symptoms. Methods A cross-sectional study was conducted in a sample comprised of 1,164 pairs of patients with AD and caregivers from the Clinical Research of Dementia of South Korea study cohorts. The cognitive function of each sub-domain, functional impairments, depressive symptoms, and caregiver burden were assessed using the dementia version of Seoul Neuropsychological Screening Battery (SNSB-D), Barthel Index for Daily Living Activities (ADL), Seoul-Instrumental Activities of Daily Living (S-IADL), the Clinical Dementia Rating Sum of Box (CDR-SB), the Global Deterioration Scale (GDS), the Korean version of the Neuropsychiatric Inventory (K-NPI), and the 15-item Geriatric Depression Scale. Results We found that higher severity (higher CDR-SB and GDS scores) and more functional impairment (lower ADL and higher S-IADL scores) were significantly associated with higher caregiver burden. In addition, depressive symptoms of patients (higher Geriatric Depression Scale scores) were associated with higher caregiver burden. Conclusion Therefore, interventions to help maintain activities of daily living in patients with AD may alleviate caregiver burden and improve caregiver well-being. PMID:24843370
Rioux, Jean-Philippe; Narayanan, Ranjit; Chan, Christopher T
Recent studies have suggested improvements in quality of life (QOL) in patients on quotidian dialysis compared with conventional hemodialysis. Few studies have focused on the burden and QOL in caregivers of patients with end-stage renal disease (ESRD) on nocturnal home hemodialysis (NHD). We aim to assess the caregivers' burden, QOL, and depressive symptoms and to compare these parameters with their patients' counterparts. Cross-sectional surveys were sent to 61 prevalent NHD patients and their caregivers. Surveys assessed demographics, general self-perceived health using the 12-Item Short Form Health Survey (SF-12) and the presence of depression using the Beck Depression Inventory. Subjective burden on caregivers was assessed by the Caregiver Burden scale and was compared with perceived burden by the patients. Thirty-six patients and 31 caregivers completed the survey. The majority of caregivers were female (66%), spouse (81%) with no comorbid illness (72%). Their mean age was 51 ± 11 years. Patients were mostly male (64%) with a median ESRD vintage of 60 months (interquartile range [IQR], 18-136 months) and a mean age of 52 ± 10 years. Compared to caregivers, patients had lower perceived physical health score but had similar mental health score. Depression criteria were present in 47% of patients and 25% of caregivers. Total global burden perceived by either caregivers or patients is relatively low. Although there is a relatively low global burden perceived by caregivers and patients undergoing NHD, a significant proportion of both groups fulfilled criteria for depression. Further innovative approaches are needed to support caregivers and patients performing NHD to reduce the intrusion of caring for a chronic illness and the risk of developing depression. PMID:22304491
Spurlock, Wanda Raby
The purpose of this study was to examine the relationship between spiritual well-being and caregiver burden in family caregivers of persons with Alzheimer's disease. A descriptive, correlational research design was used, and a convenience sample of 150 caregivers was surveyed (71 African Americans, 77 Caucasians, and 2 other caregivers). Descriptive statistics were used to examine selected caregiver demographics. Statistical analysis included bivariate correlations using the Pearson product-moment coefficient correlation. The study's research question was as follows: What is the relationship between spiritual well-being and caregiver burden? It was hypothesized that there would be an inverse relationship between the 2 variables. A statistically significance inverse relationship (R = -.493, P < or = .01) was found to exist between the variables, thereby supporting the study's hypothesis. Additional findings revealed significant differences in African American and Caucasian caregiver's perception of spiritual well-being and caregiver burden. Caregivers also reported frequent use of spiritual behaviors or practices such as prayer. Findings implicate the need for further investigation and development of culturally relevant caregiver intervention strategies and programs that incorporate spirituality as a core component. PMID:15973342
In 2008, there were 44 million informal family caregivers and the number is expected to rise in the next decade. Hospice clinicians need to explore ways to decrease the burden of care for these informal caregivers. The use of electronic technology and social media may be a key component in improving support at end of life in the home setting. PMID:24802601
Jutras, Sylvie; Veilleux, France
Telephone interviews with 294 people in Quebec involved in informal care of elderly persons found that perceived burden was related to level of assistance provided, participation in personal care activities, the elderly person's functional independence and health status, caregiver's age, relationship between caregiver and patient, living…
John, Robert; Hennessy, Catherine Hagan; Dyeson, Timothy B.; Garrett, Mario D.
Evaluates burden as experienced by a group of American Indian primary family caregivers. Analysis of items composing the Caregiver Burden scale indicate that caregiver burden is multidimensional and consists of several types of burden. Finds that caregiver burden is composed of four dimensions: role conflict, negative feelings, lack of caregiver…
Lee, Yoon-Ro; Sung, Kyu-Taik
Compares cultural influences on caregiver burdens of Korean adult children and American adult children caring for parents with dementia. Identifies culturally specific values, norms, and customs associated with low or high burden. Findings show low burden for Korean caregivers and high burden for American caregivers. (MKA)
Pearson, Jane; And Others
Examined aspects of patient status and caregiver perceptions in 46 pairs of elderly psychiatric patients and their caregivers. Found that significant predictors of caregiver burden included disruptive patient behavior, caregiver distress, and patients' functional limitations. Findings suggest that predictors of caregiver burden vary with patient…
Singh, P M; Prajapati, A
Schizophrenia is the one of the severest form of psychiatric disorder. The disorder affects not only the patient but the family also. This study is performed to assess the burden faced by care givers of schizophrenic patients. Family burden interview schedule was used in this study. There were forty patients in study, twenty six male and fourteen female. Forty caregivers were interviewed for assessment of burden, among whom thirty were female and ten male. And to compare burden forty care givers of bipolar patients were taken. Female parents were the most usual care givers, with average age of 58.3 years and most of them were housewives. The most burden were in the area of finance and family dynamics and overall burden was moderate. PMID:24696936
Seltzer, Benjamin; And Others
Analyzes caregiver burden in relation to Alzheimer patients' awareness of their own deficits. Results suggest that caregiver burden was associated with impaired patient awareness of memory deficit independent of disease stage and dementia severity, suggesting that impaired awareness may be an important mediator of caregiver burden. (RJM)
Wittenberg-Lyles, Elaine; Washington, Karla; Demiris, George; Oliver, Debra Parker; Shaunfield, Sara
Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network, and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision making, family dynamics, and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver's support needs and include assessment on the type of support to be offered. PMID:24345081
Washington, Karla; Demiris, George; Parker Oliver, Debra; Shaunfield, Sara
Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision-making, family dynamics and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered. PMID:24345081
Chwalisz, Kathleen; Kisler, Valerie
Reports the results of a study measuring the construct "caregiver burden," as traditionally defined versus when compared to perceived stress. The Perceived Stress Scale was found to be a better predictor of mental and physical health status for 107 spouse caregivers of persons with brain injuries than was a traditional measure of caregiver burden.…
Caserta, Michael S.; And Others
Examined the multidimensional nature of caregiver burden by specifically analyzing the patterns of association between five dimensions (in a sample of 160 caregivers) as measured by the Caregiver Burden Inventory and selected demographic, health, functioning, and well-being indicators. Time dependence burden was most influenced by patient…
Mak, Winnie W S; Cheung, Rebecca Y M
The present study tested the mediating role of affiliate stigma on the relationships between face concern with psychological distress and subjective burden among caregivers of people with severe mental illnesses. One hundred and eight Chinese caregivers in Hong Kong were surveyed. Based on Baron and Kenny's (J Pers Soc Psychol 51:1173-1182, 1986) approach, affiliate stigma was found to serve as a partial mediator between face concern and caregiver distress and a full mediator between face concern and subjective burden. Cultural linkage of stigma and caregiver outcomes was identified, suggesting that researchers and practitioners should use a culturally sensitive approach to understand caregivers' experience and alleviate their stigma. PMID:21681460
Rodakowski, Juleen; Skidmore, Elizabeth R.; Rogers, Joan C.; Schulz, Richard
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
Lai, Daniel W. L.
The factor structure of a Chinese version of the Zarit Burden Interview was assessed with a random sample of Chinese caregivers in Canada. The results indicated that the latent constructs identified in earlier studies on caregivers did not fit well when tested with Chinese caregivers. Exploratory factor analysis reported a five-factor solution,…
Belasco, Angelica G; Sesso, Ricardo
The aim of this study is to describe the characteristics of caregivers of chronic hemodialysis patients, assess their perceived burden and health-related quality of life, and investigate factors influencing this burden. We studied 100 hemodialysis patients and their respective primary caregivers for more than 4 months, measuring quality of life by the Medical Outcomes Survey 36-Item Short-Form Health Survey (SF-36). Subjective burden on caregivers was assessed by the Caregiver Burden scale (score range, 1 to 4; higher values indicate a greater effect). The majority of caregivers were women (84%), married (66%), with a mean age of 46 +/- 2 (SE) years, and of low socioeconomic level. Their main types of relationship with patients were wives (38%) and sons or daughters (27%). Caregiver Mental Health and Vitality were the most affected emotional dimensions on the SF-36 (mean scores, 64.4 +/- 1.8 and 66.6 +/- 1.7, respectively). Mean score of total burden experienced was 2.07 +/- 0.05. Multiple regression analysis showed that independent and significant predictors of burden were Mental Health of the caregiver (R2 = 24%), Vitality of the patient (R2 = 10%), type of relationship of the caregiver (female spouse) (R2 = 5%), and Pain of the caregiver (R2 = 3%). Caregivers of hemodialysis patients may experience a significant burden and an adverse effect on their quality of life. Emotional aspects of caregivers (particularly female spouses) and patients are important predictors of burden. Social support and psychological interventions should be considered to improve caregiver life and patient outcomes. PMID:11920347
Armstrong, Nicole; Schupf, Nicole; Grafman, Jordan; Huey, Edward D.
Background and Aims Caregiver stress is often a serious problem when caring for a patient with frontal lobe dysfunction. Methods A total of 102 caregivers of both patients with frontotemporal degeneration and corticobasal syndrome completed the Frontal Systems Behavior Scale (FrSBe) and the Zarit Burden Interview (ZBI). To analyze the association between apathy or disinhibition (or both) and caregiver burden, the effects of the total FrSBe and the apathy and disinhibition subscales of the FrSBE on the total ZBI score were assessed with logistic regressions and t tests. Results Total FrSBE score and the apathy FrSBE subscore predicted caregiver burden. Apathy occurred without disinhibition, and the two occurred together, but disinhibition without apathy was very rare. Conclusions Disinhibition without apathy occurred very rarely. Apathy was more associated with caregiver burden than disinhibition. PMID:24022248
Dhandapani, Manju; Gupta, Sandhya; Dhandapani, Sivashanmugam; Kaur, Prabhjot; Samra, Kanwaljit; Sharma, Kirti; Dolma, Kunchok; Mohanty, Manju; Singla, Navneet; Gupta, Sunil K.
Background: Caregivers of patients with intracranial tumors handle physical, cognitive, and behavioral impairments of patients. The purpose of this study was to assess the magnitude of burden experienced by primary caregivers of patients operated for intracranial tumors and evaluate factors influencing it. Methods: Descriptive cross-sectional design was used to assess home-care burden experienced by primary caregivers of patients operated for intracranial tumors. Using purposive sampling, 70 patient-caregiver pairs were enrolled. Modified caregiver strain index (MCSI) was used to assess the caregiver burden. Mini mental status examination (MMSE), Katz index of independence in activities of daily living (ADL), and neuropsychiatric inventory questionnaire (NPI-Q) were used to assess the status of patients. Results: Of 70 caregivers, 45 had mild, and 22 had moderate MCSI burden. A number of behavioral changes in NPI-Q had a significant correlation with MCSI burden (P < 0.001), whereas MMSE and Katz-ADL of patients did not show significant relation with caregiver burden. In NPI-Q, irritability, agitation, anxiety, depression, and sleep disturbances had a significant impact on MCSI. Among caregiver factors, unemployment, low per capita income, time spent, inability to meet household needs, quitting the job, and health problems had a significant impact on MCSI. In separate multivariate analyses, irritability component (P = 0.004) among behavioral changes of patients and caregivers’ inability to meet household needs (P < 0.001) had a significant association with caregiver burden independent of other factors. Conclusions: Behavioral changes in patients (especially irritability) and financial constraints had a significant independent impact on the burden experienced by primary caregivers of patients operated for intracranial tumors. Identifying and managing, these are essential for reducing caregiver burden. PMID:26543669
Cumming, John McClure
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…
Moore, Crystal Dea
A cross-sectional study of 76 family caregivers of older veterans with congestive heart failure utilized the McMaster model of family functioning to examine the impact of family functioning variables (problem solving, communication, roles, affective responsiveness, and affective involvement) on caregiver burden dimensions (relationship burden,…
Marsh, N V; Kersel, D A; Havill, J H; Sleigh, J W
Sixty-nine primary caregivers of adults with a severe traumatic brain injury (TBI) were assessed at 1-year post-injury. Caregivers completed questionnaires on the physical, cognitive, emotional, behavioural, and social functioning of the person with TBI. Caregiver objective burden, psychosocial functioning, and subjective burden were also assessed. Clinically significant levels of anxiety and depression were evident in over a third of the caregivers. Similarly, a quarter of the caregivers reported poor social adjustment. There was no consistent relationship between the prevalence of various types of objective burden and the level of subjective distress that resulted from these changes. The person with TBI's emotional difficulties, in particular their anger, apathy, and dependency, caused the greatest distress for caregivers. With regard to the impact that caregiving had on their own lives, caregivers were most distressed by the loss of personal free time. Results from a regression analysis indicated that the person with TBI's physical impairment, number of behavioural problems, and social isolation were the strongest predictors of caregiver burden. The impact that caring for a person with severe TBI can have on the extended family unit is discussed. PMID:9876864
Rofail, Diana; Abetz-Webb, Linda; Zarit, Steven H.; Berardo, Carmen Galani
Objectives. As a disease typified by early onset and chronic disease course, caring for a person with schizophrenia may have a significant impact on caregivers' lives. This study aimed to investigate the subjective experiences of caregivers of people with schizophrenia as a means of understanding “caregiver burden” in this population. Methods. Face-to-face qualitative interviews were conducted with a diverse sample of 19 US-English speaking caregivers of people with schizophrenia (who were at least moderately ill). Interview transcripts were analyzed using grounded theory methods and findings used to inform the development of a preliminary conceptual model outlining caregivers' experiences. Results. Findings support assertions that people with schizophrenia were largely dependent upon caregivers for the provision of care and caregivers subsequently reported lacking time for themselves and their other responsibilities (e.g., family and work). Caregiver burden frequently manifested as detriments in physical (e.g., fatigue, sickness) and emotional well-being (e.g., depression and anxiety). Conclusions. Caring for a person with schizophrenia has a significant impact on the lives of informal (unpaid) caregivers and alleviating caregiver burden is critical for managing individual and societal costs. Future research should concentrate on establishing reliable and valid means of assessing burden among caregivers of persons with schizophrenia to inform the development and evaluation of interventions for reducing this burden. PMID:24864209
Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia
Purpose: The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on…
Investigated determining variables of caregiver burden in caring for impaired older relatives in South Korea. Economic factors, daily caregiving hours, and caregiver's health status emerged as most important determinants of caregiver burden among 169 primary family caregivers in South Korea. Caregivers' congruency with traditional caregiver…
Geiger, Jennifer R; Wilks, Scott E; Lovelace, Lauren L; Chen, Zibei; Spivey, Christina A
Focusing on the understudied, increasing population of male Alzheimer's disease (AD) caregivers, the purpose of this study was to identify their likelihood of utilizing 3 coping strategies (task focused, emotion focused, and avoidance focused) and to examine the effects of each coping strategy on caregiving burden. Data were collected from 138 male AD caregivers in southern United States, including geographically proportional representation of African Americans in the sample. Stepwise regression revealed effects of each coping strategy on caregiving burden, controlling for demographics. The sample reported high burden. Task focused was the highest reported coping strategy. Yet, regression models indicated no significant effect of task-focused coping on burden outcomes. Emotion-focused and avoidance-focused coping each showed significant proportional effects on burden. Implications suggest that emotion- and avoidance-focused coping among male AD caregivers may be maladaptive, that is, reinforcing burden. Male AD caregivers may benefit from more task-focused coping, such as planning and active problem solving. PMID:25267930
Cardoso, Lucilene; Vieira, Mariana Verderoce; Ricci, Maira Aparecida Malagutti; Mazza, Rafael Severio
A systematic literature review was performed regarding the burden on mental health caregivers. The studies were selected from the Virtual Health Library - Biblioteca Virtual de Saúde (BVS), using the keyword caregiver burden. The main criteria for this study were: full-text articles published between 2000 and 2010, in Portuguese, English or Spanish; indexed on the BVS databases; which investigated the burden of mental health caregivers, and had caregivers as the main subject. The analysis was performed considering the following: title, year of publication, objectives, methodological approach, instruments and main results. The analysis of 114 full-text articles showed the predominant objectives were the burden on informal caregivers and the validation of psychometric scales, particularly the Zarit Scale. Some studies showed an association between high levels of burden, feelings of guilt and depressive symptoms. On the other hand, psycho-educational interventions were indicated as having a positive impact. This theme has a growing scientific interest and there is a need for deeper studies addressing formal caregivers. PMID:22576559
Chappell, Neena L.; Reid, R. Colin
Assesses overall quality of life of caregivers, using a path model in which burden was conceptualized as distinct from well-being. Findings revealed that perceived social support is strongly related to well-being but unrelated to burden, reinforcing the conceptual distinctiveness of the two concepts. Suggests that quality of life of caregivers…
Savundranayagam, Marie Y.; Montgomery, Rhonda J. V.; Kosloski, Karl
Purpose of the study: Caregiver burden is a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving. The study aims were to assess (a) whether the dimensions of burden were the same for caregiving spouses…
Landfeldt, Erik; Lindgren, Peter; Bell, Christopher F; Guglieri, Michela; Straub, Volker; Lochmüller, Hanns; Bushby, Katharine
Duchenne muscular dystrophy (DMD) is a rare pediatric neuromuscular disease associated with progressive muscle degeneration and extensive care needs. Our objective was to estimate the caregiver burden associated with DMD. We made cross-sectional assessments of caregiver health-related quality of life (HRQL) and burden using the EuroQol EQ-5D, a Visual Analogue Scale (VAS), the SF-12 Health Survey, and the Zarit Caregiver Burden Interview (ZBI) administered online. Results were stratified by disease stage (early/late ambulatory/non-ambulatory) and caregivers' rating of patients' health and mental status. In total, caregivers to 770 patients participated. Mean EQ-5D utility ranged between 0.85 (95 % CI 0.82-0.88) and 0.77 (0.74-0.80) across ambulatory classes and 0.88 (0.85-0.90) and 0.57 (0.39-0.74) across caregivers' rating of patients' health and mental status. Mean VAS score was 0.74 (0.73-0.75), mean SF-12 Mental Health Component Summary score 44 (43-45), and mean ZBI score 29 (28-30). Anxiety and depression, recorded in up to 70 % of caregivers depending on patients' health and mental status, was significantly associated with annual household cost burden (>$5000 vs. <$1000, odds ratio 1.76, 95 % CI 1.18-2.63) and hours of leisure time devoted to informal care per week (25-50 vs. <25 h 2.01, 1.37-2.94; >50 vs. <25 h 3.35, 2.32-4.83) (p < 0.007). We show that caring for a person with DMD can be associated with a substantial burden and impaired HRQL. Our findings suggest that caregivers to patients with DMD should be screened for depression and emphasize the need for a holistic approach to family mental health in the context of chronic childhood disease. PMID:26964543
Zhan, Heying Jenny
This article uses the life course perspective to combine micro- and macro-levels of analysis of caregiving burdens experienced by Chinese baby-boom cohort and then explores their elder care prospects. Based on survey interviews during 1997 and 1998 with 110 caregivers providing care to dependent parents or parents-in-law, this study finds that…
Ueda, T; Hashimoto, M; Kurushima, Y; Goto, H; Nakazono, N; Kosaka, M; Oshio, M; Minase, F; Aoki, N
In order to elucidate the degree of feeling burdened and factors affecting caregiving burden of elderly caregivers, a questionnaire survey was performed on 241 female caregivers of infirm elderly. The surveyed group consisted of 138 caregivers under 60 years of age (young group) and 103 aged 60 and over (old group). The major results of this survey were as follows, 1) Conditions perceived as unfavorable in the old group were related to caregiving assistants, number of the family members and health condition of the caregiver. 2) Greater number of infirm elderly with serious ADL problems and higher average body weight of the elderly cared for were seen for the old group than the young group. 3) The old group had a larger number of problem incidents and expressed more eager desire for transfer of elderly to institutional care than providing the young group. 4) A feeling of burden in daily care appeared larger for night care, body discharge disposal and bathing care of the elderly and was more frequent in those above 70 than under 70 years of age. 5) Hours in bed were longer and range of movement by wheel chair was more limited for infirm elderly as the caregiver's age increased. These results suggest that the above-mentioned unfavorable conditions in elderly caregivers promote a state of becoming bedridden and a lowering of ADL ability of infirm elderly. PMID:8068963
Shamsaei, Farshid; Cheraghi, Fatemeh; Bashirian, Saied
Objective: The aim of this study was to determine the prevalence of the burden reported by family caregivers of Patients with schizophrenia. Methods: This cross sectional study involved face-to-face interviews with family caregivers of patients with schizophrenia. Using convenience sampling, 225 caregivers were selected from Farshchian psychiatry Hospital in Hamadan, Iran from July to September 2012. Measures included patients and caregivers’ demographic variables and caregivers’ burden using the Zarit Burden Interview (ZBI). Data were analyzed by SPSS-18 with Pearson correlation and t-test. Results: Using the ZBI, we found that 7.6% of the caregivers experienced “no to low” burden, 23.5% “mild to moderate”, 41.8% “moderate to severe” and 27.1% “severe” burden. The mean average score of the responses to ZBI was 51.73 (SD: ± 18.23). The level of burden experienced was significantly associated with age, gender, and educational level, relation to care recipient, caregiving duration and duration of schizophrenia illness. Conclusion: Mental health professionals need to develop more innovative programs for families of schizophrenic patients. Furthermore, as a replacement for supporting the families and easing their burdens, it may be more effective to include them in the health care team by assigning specific tasks and providing the required resources to them to perform such tasks. PMID:27006669
Background Subjective burden is a central variable describing the situation encountered by family caregivers. The 10-item short version of the Burden Scale for Family Caregivers (BSFC-short/BSFC-s) was developed to provide an economical measure of this variable. The present study examined the reliability and validity of the BSFC-s. Methods Comprehensive data from “the IDA project” were the basis of the calculations, which included 351 dyads and examined medical data on people with dementia, interview data from their family caregivers, and health insurance data. A factor analysis was performed to explore the structure of the BSFC-s; Cronbach’s alpha was used to evaluate the internal consistency of the scale. The items were analyzed to determine the item difficulty and the discriminatory power. Construct validity was tested with five hypotheses. To establish the predictive validity of the BSFC-s, predictors of institutionalization at a follow-up time of 2.5 years were analyzed (binary logistic regression). Results The BSFC-s score adhered to a one-factor structure. Cronbach's alpha for the complete scale was .92. A significant increase in the BSFC-s score was observed when dementia progressed, disturbing behavior occurred more frequently, care requirements increased, and when caregivers were diagnosed with depression. Caregiver burden was the second strongest predictor of institutionalization out of a total of four significant predictors. Conclusions All hypotheses that referred to the construct validity were supported. The BSFC-short with its ten items is a very economical instrument for assessing the caregiver’s total subjective burden in a short time frame. The BSFC-s score has predictive validity for the institutionalization of people with dementia. Therefore it is an appropriate outcome measure to evaluate caregiver interventions. The scale is available for free in 20 languages (http://www.caregiver-burden.eu). This availability facilitates the
Möller-Leimkühler, Anne Maria; Wiesheu, Andreas
The aim of the present study is to identify the relative contribution of patient and caregiver characteristics in a sample of primary carers of patients with chronic mental disorders living in the community. As carers were recruited from caregiver organizations, mainly mothers of an adult child suffering from schizophrenia participated in the study (n = 102). Within a comprehensive transactional stress model, burden was assessed with respect to objective and subjective burden, cognitive-emotional well-being, psychological distress and subjective quality of life. Primary stressors include illness-related characteristics of the patient, and a number of personal dispositions and resources of the caregivers were included as potential moderating variables. Multiple regression analyses were separately calculated for each dimension of burden. Interaction of carers' expressed emotion and external locus of control with the patient's problem with family communication as well as perceived social support was most predictive for objective and subjective burden, whereas carers' neuroticism appeared as the most relevant predictor of their well-being, psychological distress and subjective quality of life. Among the patients' variables, regular employment contributed significantly to reduce carers' distress and enhance their well-being. As the sample was recruited from caregiver organizations, a selection bias has to be taken into account. To reduce caregiver burden, especially mothers' burden, the patients' occupational abilities should be strongly enhanced at an early stage. Family interventions should improve dysfunctional interactions, enhance the carers' social activities and focus more intensely on the carers' own dispositions. PMID:21538092
Srivastava, Garima; Tripathi, Rakesh Kumar; Tiwari, Sarvada Chandra; Singh, Bhupinder; Tripathi, Shailendra Mohan
Background: Dementia is the most devastating cognitive disorder of the elderly and needs extra attention to care. Therefore, this study was conducted to identify the caregiver burden of dementia key caregivers and their Quality of Life (QOL). Materials and Methods: Sample consisted of purposively selected 24 dementia key caregivers fulfilling the inclusion criteria from the in-patient of the Department of Geriatric Mental Health, King George's Medical University, Lucknow, Uttar Pradesh, India. Zarit Burden Interview and World Health Organization QOL-BREF were administered. Mean, standard deviation, t-test, Chi-square with Yate's correction were used to analyze the data. Results: All key caregivers felt mild to moderate level of burden. Gender-wise significant difference was found on burden area of expectation (P < 0.05). Mean scores on physical, psychological, social relationship, and environmental QOL were found to be on lower side. A negative correlation was found between burden and QOL. Conclusion: Professional help and supportive psychotherapy can be provided to the key caregivers of dementia patients to reduce their burden, strengthen the coping skill and thus improve their QOL. PMID:27114625
Yu, Hongmei; Wang, Xiaocheng; He, Runlian; Liang, Ruifeng; Zhou, Liye
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
Kahn, Phoebe V.; Wishart, Heather A.; Randolph, Jennifer S.; Santulli, Robert B.
Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI) and the Caregiver Section of the Family Stigma in Alzheimer's Disease Scale (FS-ADS-C). Scores on the FS-ADS-C and ZBI were positively correlated (rs = .51, p < .001). Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80) = −4.37, p < .001) and more burden on the ZBI (t(80) = −2.68, p = .009) compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8) = −2.22, p = .034) and more burden on the ZBI (t(80) = −2.65, p = .010) than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden. PMID:26941795
Bahrami, Masoud; Etemadifar, Shahram; Shahriari, Mohsen; Farsani, Alireza Khosravi
Background: Living with patients of chronic diseases such as heart failure (HF) is a difficult situation for the caregivers. This study explored the Iranian family caregivers’ burden of caregiving for patients with HF. Materials and Methods: Eighteen family caregivers of the HF patients from two governmental medical training centers in Isfahan, Iran were recruited using purposive sampling. Data were collected through face-to-face semi-structured interviews. Each interview was transcribed verbatim and was thematically analyzed concurrently. Results: Four major themes emerged from the analysis of the transcripts: Lack of care-related knowledge, physical exhaustion, psychosocial exhaustion, and lack of support. Family caregivers believed that they have little knowledge about the patients’ disease, drugs, and how to perform caregiving roles. They experienced negative physical and psychosocial consequences of full-time and highly extended caregiving roles, such as musculoskeletal disorder, fatigue, and sleep disturbance, and a high level of anxiety, stress, and social isolation. Caregivers believed that they receive little familial and organizational support on the emotional and financial dimensions of caregiving. Conclusions: The findings of this study can be used by healthcare providers, especially nurses, to provide more effective social, informational, and professional support for family caregivers. PMID:24554961
Land, Helen; Guada, Joseph
The study of caregiver burden is important for those faced with chronic illnesses such as AIDS as caregivers are the first line of care provision, sustaining care recipients in the home. Because perception of burden may vary across caregiver cultural groups, accurate measurement of burden is crucial to offer culturally sensitive services for those…
Guerriere, Denise; Husain, Amna; Zagorski, Brandon; Marshall, Denise; Seow, Hsien; Brazil, Kevin; Kennedy, Julia; Burns, Sheri; Brooks, Heather; Coyte, Peter C
Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have
Essex, Elizabeth Lehr; Hong, Jinkuk
Based on a sample of 126 families, this study investigated how division of household labor is related to marital satisfaction and caregiving burden among older married parents caring for adult children with intellectual disabilities. For mothers, greater spousal participation in household work and satisfaction with the division of labor were…
Rabin, Claire; And Others
Personal authority in family system (PAFS), intergenerational construct linking personal development and family interaction, was hypothesized to predict stress/strain of adult children caring for elderly disabled parents. Caregivers (n=70) completed measures of PAFS and of caregiver burden. Caregiving burden was significantly correlated to…
Pomponi, Massimiliano; Ricciardi, Lucia; La Torre, Giuseppe; Fusco, Domenico; Morabito, Bruno; Ricciardi, Diego; Di Gioia, Annamaria; Bernabei, Roberto; Bentivoglio, Anna Rita
Patients benefit from the presence of empathic caregivers (CGs). In this regard, empathy toward the patient is one of the clinical targets for improving patient outcomes. However, relatively little is known about the impact of patients' empathic responses on the CGs' burden. Among people living with Parkinson's disease (PwP), care partners play a major role. This study involved 28 spouse-patient couples. Empathy, stress burden, and mood disorders (such as anxiety and depression) were assessed over a 6-month period, before and after the reported intervention. Our observation points out that the improvement of patient empathy is necessary for a significant burden reduction among spouses caring for PwP. PMID:27570901
Shim, Sang Hong; Kang, Hyo Shin; Kim, Ji Hae
Objective Dementia symptoms (cognitive function, daily-living function, and neuropsychiatric symptoms) become more serious over time, which is likely to increase caregiver burden. The aim of this study is to investigate which dementia-related symptoms, and how the progression of these symptoms, have influenced caregiver burden during a 1-year follow-up assessment. Methods A total of 110 patients with dementia were assessed for their cognitive function, daily-living function, and neuropsychiatric symptoms. Caregivers were assessed for their caregiver burden. Bivariate analyses were conducted between caregiver burden and dementia patients' symptoms, in order to examine which particular symptoms were significantly associated with caregiver burden at the baseline. A multiple regression analysis was then conducted with each significantly associated variable with a view to identifying determinants, influencing caregiver burden. Additionally, bivariate analyses were conducted between the changes in caregiver burden and the changes in patients' symptoms, to investigate which patient variable could best describe caregiver burden from baseline to the 1-year follow-up. A multiple regression analysis was conducted with each significantly-associated change in symptom, in order to identify determinants that influence a change in caregiver burden. Results Neuropsychiatric symptoms, such as irritability, aberrant motor-behavior, delusions and disinhibition were found to be significant predictors of caregiver burden at baseline, according to multiple regression analysis. In addition, changes in neuropsychiatric symptoms, such as delusions, agitation and memory-related functioning in daily-living significantly predict a change in caregiver burden. Conclusion Our results demonstrate that neuropsychiatric symptoms and memory impairment in daily-living functions are significant predictors of an increase in caregiver burden. PMID:26766945
Crist, Janice D; McEwen, Marylyn Morris; Herrera, Angelica P; Kim, Suk-Sun; Pasvogel, Alice; Hepworth, Joseph T
Caregiving burden has been shown to predict use of home care services among Anglo Americans. In a previous study, only one of two dimensions of caregiving burden predicted such use among Mexican American caregivers. Because acculturation and familism may affect burden, we conducted analyses to test three hypotheses: increased acculturation decreases familism; decreased familism increases burden; and increased burden increases use of home care services. Among 140 Mexican American family caregivers, acculturation was positively correlated with familism; familism was not significantly correlated with burden; objective burden was positively correlated with use of home care services, and objective and subjective burden significantly interacted in their effect on the use of home care services. Targeted interventions may be needed to increase use of home care services and preserve the well-being of Mexican American elders and caregivers. PMID:19769211
Background Lack of state supported care services begets the informal caregiving by family members as the mainstay of care provided to the dependent older people in many Low and Middle Income Countries (LMICs), including India. Little is known about the time spent on caregiving, its cost and the burden experienced by these informal caregivers. We aimed to estimate the costs of informal caregiving and to evaluate the nature as well as correlates of caregivers’ burden in a rural Indian community. Methods We assessed 1000 people aged above 65 years, among whom 85 were dependent. We assessed their socioeconomic profiles, disability, health status and health expenditures. Their caregivers’ socio-demographic profiles, mental health, and the time spent on caregiving were assessed using standard instruments. Caregiver’s burden was evaluated using Zarit Burden Scale. We valued the annual informal caregiving costs using proxy good method. We employed appropriate non-parametric multivariate statistics to evaluate the correlates of caregivers’ burden. Results Average time spent on informal caregiving was 38.6 (95% CI 35.3-41.9) hours/week. Estimated annual cost of informal caregiving using proxy good method was 119,210 US$ in this rural community. Mean total score of Zarit burden scale, measuring caregivers’ burden, was 17.9 (95% CI 15.6-20.2). Prevalence of depression among the caregivers was 10.6% (95% CI 4.1-17.1%). Cerebrovascular disease, Parkinson’s disease, higher disability, insomnia and incontinence of the dependent older people as well as the time spent on helping Activities of Daily Living and on supervision increased caregiver's burden significantly. Conclusions Cost and burden of informal caregiving are high in this rural Indian community. Many correlates of burden, experienced by caregivers, are modifiable. We discuss potential strategies to reduce this burden in LMICs. Need for support to informal caregivers and for management of dependent older
Martire, Lynn M.; Hinrichsen, Gregory A.; Morse, Jennifer Q.; Reynolds, Charles F.; Gildengers, Ariel G.; Mulsant, Benoit H.; Schulz, Richard
In this paper we present a brief measure of caregiver burden, the Mood Disorder Burden Index (MDBI), for use with family members and close friends of adults with major depressive disorder (MDD) or bipolar disorder (BD). The MDBI assesses burden in three core domains (patients’ mood symptoms, caregivers’ worry about the future, and caregivers’ interpersonal difficulties with the patient) and includes an optional module that assesses caregiver burden associated with patients’ pharmacotherapy or psychotherapy. The MDBI was administered to caregivers of older individuals (i.e., 58 years and older) with MDD (n = 123) or BD (n = 38 who were receiving treatment through a research study. Analyses indicated evidence of convergent and discriminant validity of the new measure well as internal consistency within both caregiver groups. It will be important for future research to administer the MDBI to caregivers of middle-aged and older patients as well as those receiving treatment through inpatient settings or community outpatient clinics. PMID:19427705
Akpan-Idiok, Paulina Ackley; Anarado, Agnes Nonye
Introduction Cancer care is devastating to families. This research studied the informal caregivers’ perceptions of burden of caregiving to cancer patients attending University of Calabar Teaching Hospital, Calabar. Methods The research adopted a cross-sectioned descriptive design and 210 caregivers providing care to advanced cancer patients were purposively selected. Data were collected using a researcher developed questionnaire and standardized Zarit Burden Interview scale (ZBIS). Data collected were analysed using descriptive and chi-square statistics with the help of SPSS 18.0 and PAS 19.0 softwares. Results The results indicated that the caregivers were in their youthful and active economic age, dominated by females, Christians, spouses, partners and parents. The burden levels experienced by the caregivers were as follows: severe (46.2%), moderate (36.2%) and trivial of no burden (17.6%). The forms of burden experienced were physical (43.4%), psychological (43.3%), financial (41.1%) and social (46.7%), quite frequently and nearly always. Psychological and social forms of burden had the highest weighted score of 228 in terms of magnitude of burden. The result further showed that there was a significant (P = 0.001) and inverse association between caregivers’ burden and the care receivers’ functional ability. The level of burden also increased significantly (P = 0.000) with the duration of care, while there was also a significant (P = 0.01) relationship between caregivers’ experience of burden and their desire to continue caregiving. Conclusion Caregiving role can be enhanced by provision of interventions such as formal education programme on cancer caregiving, oncology, home services along side with transmural care. PMID:25419297
Chessick, Cheryl A.; Perlick, Deborah A.; Miklowitz, David J.; Kaczynski, Richard; Allen, Michael H.; Morris, Chad D.; Marangell, Lauren B.
We examined whether caregivers of bipolar patients reporting current suicidal ideation and/or a history of a suicide attempt reported higher levels of burden and/or poorer health compared to caregivers of patients without these suicidality indices. In a cross-sectional design, caregivers (N = 480) associated with (a) patients with current suicidal…
Unwin, Gemma; Deb, Shoumitro
The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and…
Fox, K; Hinton, W L; Levkoff, S
This pilot study uses an anthropological gaze to analyze transcripts of extended in-home interviews among a set of ten caregivers of African-American elders with dementia. How are race and ethnicity made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers? The essay contrasts prevailing cultural representations of African-American caregiver burden with caregiver interview data. What we find is that current constructs which consistently demonstrate "lesser burden" among African-American caregivers compared with Whites may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of "burden" and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course. PMID:10647946
McCallion, P.; McCarron, M.; Force, L. T.
It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more…
Flyckt, Lena; Fatouros-Bergman, Helena; Koernig, Thomas
Background: In a previous study, the objective burden of informal caregiving to patients with psychotic disorders amounted to 22 hours/week, and the subjective burden was huge with predominately anxiety and depression as main symptoms. In this study, determinants of the informal caregiving burden are analyzed to find foci for interventions to ease the size of burden. Methods: Patients with psychotic disorders (n = 107) and their informal caregivers (n = 118) were included. They were assessed with a comprehensive battery of rating scales including patient and caregiver characteristics as well as the amount and quality of health-care provision. Results: A multiple linear regression analysis showed that the subjective burden was significantly lower when patients had higher levels of functioning and when the health status of the informal caregivers was good. No significant determinants were found for the objective burden, but an association was found between a higher socioeconomic status of the caregivers and the amount of money provided for the patient. An association was also found between a positive perception of caregiving and more hours spent on caregiving. Conclusion: The functioning level of the patients was the main determinant of the subjective burden of informal care. For the objective burden, no main determinant was found. PMID:25770207
Ganapathy, Vaidyanathan; Graham, Glenn D; DiBonaventura, Marco D; Gillard, Patrick J; Goren, Amir; Zorowitz, Richard D
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
Delalibera, Mayra; Presa, Joana; Barbosa, António; Leal, Isabel
Caring for a family member with an advanced and/or terminal illness can be a great emotional, physical and financial burden that has an impact on the quality of life of the caregivers. The scope of this study was to conduct a systematic review of the literature on the burden of caregiving, related factors and the consequences for family caregivers of advanced stage cancer patients or patients in end-of-life or palliative care. A search for scientific papers published in the EBSCO, Web of Knowledge and BIREME databases was conducted since records on this topic began in the databases through March 2014. Of the 582 articles found, only 27 were selected. The majority of the articles found that family caregivers were overburdened. Some studies found that the care-giving burden was associated with characteristics of the patients and their illnesses while, in other studies, it was associated with poor health of the caregiver, greater psychopathological symptoms (anxiety, depression, emotional distress) and with the development of complications in the grieving process. However, hope, social support, the ability of the caregiver to attribute meaning to the experience of caring and feeling comfortable with the tasks of caring were associated with lower levels of burden. PMID:26331505
Turner, H A; Catania, J A
Characteristics and caregiving experiences of friends and family members caring for people with AIDS (PWAs) were examined. Based on a probability sample of informal AIDS caregivers ages 18-49 living in central cities of the United States (n = 260), analyses were conducted to (a) identify the sociodemographic characteristics of young central city caregivers; and (b) examine the effects of caregiver characteristics (relationship to PWA, gender, race/ethnicity, income, sexual orientation, HIV status, perceived susceptibility), and level of objective caregiving demands, on subjective caregiver burden. Results indicate that the largest group of caregivers in this age category are male friends of the PWA--a group not typically found among caregivers to persons with other types of illnesses. In general, gay or bisexual caregivers, caregivers who have traditional family ties to the PWA, men relative to women, and lower income caregivers, report the greatest burden. While level of caregiving demands represents the most influential predictor of caregiver burden, white and male caregivers experience greater burden, independent of level of involvement and other caregiver characteristics. Receiving instrumental support with caregiving buffers the impact of high objective demands on subjective burden. PMID:9231995
Cotelo, Natalia Vérez; Rodríguez, N. Floro Andrés; PÉREZ, José A. Fornos; Iglesias, J. Carlos Andrés; Lago, Marcos Ríos
Objectives: To evaluate the profile of family caregivers of Alzheimer’s disease patients, identify any signs of psychopathology, quantify the level of perceived burden on the caregiver, and determine the caregiver’s relationship with their pharmacist. Methods: A cross-sectional study was conducted at a community pharmacy in Pontevedra, Spain. Demographic variables were collected, and the following questionnaires were administered: the Beck Depression Inventory-II, STAI-Anxiety Questionnaire, Zarit Burden Scale, family APGAR scale, and the Duke-UNC questionnaire. Results: The typical caregiver profile consists of a 55-year old first degree relative (mostly daughters) with a primary education who belongs to a functional or mildly dysfunctional family. Nearly one quarter (24%) of caregivers had a high perception of burden, with anxiety in 20% of caregivers and symptoms of depression in 20%. Family caregivers usually went to the same pharmacy as the patients (96%), were treated with psychotropic drugs (68%), and interacted with the pharmacist (92%). Conclusion: This study confirmed that psychological distress and burden is present among family caregivers. Care for caregivers should be integrated into patient care as part of a national plan, including grants and subsidies, which will result in better care of Alzheimer’s patients. Pharmacists are the most accessible health care professionals and can provide information about Alzheimer’s disease management to caregivers to ease the burden of care. PMID:26131040
Chandran, Vishnu; Chowta, Nithyananda; Ramapuram, John; Bhaskaran, Unnikrishnan; Achappa, Basavaprabhu; Jose, Hyma
Introduction In India, family caregivers provide bulk of care to People Living With HIV/AIDS (PLWHA). Caregiver burden refers to the physical, emotional and financial hardships associated with providing care to a diseased individual. Attending to the needs of PLWHA can place a significant burden on family members. This may adversely affect their Quality of Life (QOL). Aim The main aim of our study was to assess the caregiver burden and QOL among the family members of PLWHA in Southern India. We also determined the impact of caregiver burden on QOL. Materials and Methods This facility based cross-sectional study was carried out at Kasturba Medical College (KMC) Mangalore. The study was conducted over a period of 18 months starting from October 2013. A total of 360 caregivers participated in our study. The data were collected by face-to-face interview. Caregiver burden was assessed using the Zarit Burden scale & WHOQOL-BREF scale was used to assess the QOL of caregivers. The collected data was entered and analysed using SPSS version 11.5. A p-value of less than 0.05 was considered statistically significant. Results The mean age of caregivers was 36.09± 10.18 years. Most of the caregivers were females 279 (77.5%). Majority of caregivers 184 (51.1%) belonged to Middle/Lower Middle socioeconomic class (Kuppuswamy class III). Majority of PLWHA 155 (43.1%) had Stage 2 disease. Mean CD4 count of the patients was 405.2± 240 cells/μL. In our study 88(24.4%) caregivers had moderate to severe burden and 36(10%) had very severe burden. Physical domain of QOL showed maximum score of 60.28±13.08, while a minimum score of 51.88 ± 14.20 was seen in social domain. With increase in caregiver burden, the mean QOL scores decreased which was statistically significant. Conclusion Our study highlights the need to counsel the caregivers on how to deal with PLWHA in the family. Family care plays a major role in the general wellbeing of PLWHA. Majority of national HIV programmes all
DeKoven, M; Karkare, S; Lee, W C; Kelley, L A; Cooper, D L; Pham, H; Powers, J; Wisniewski, T
Inhibitor development complicates haemophilia treatment and may impact caregiver burden. Compare overall burden of caregivers of children with/without inhibitors in the United States using a novel disease-specific questionnaire and the previously validated CarerQol. An on-line questionnaire with six burden domains (i.e. emotional stress, personal sacrifice, financial burden, medical management, child's pain, and transportation) and three visual analogue scales (VAS) was developed based upon a targeted literature review and previous survey findings. The study sample consisted of caregivers of children with haemophilia. The total burden score was calculated by summing the six individual burden domain scores. Higher scores represented greater burden. Descriptive statistics was performed to examine the sample characteristics. The Wilcoxon rank-sum test was performed to compare burden by inhibitor status. All variables were considered significant at P < 0.001. A total of 310 caregivers completed the survey; 30 of them reported caring for a child with an inhibitor. A majority of caregivers of children with inhibitors were mothers (80.0%) and between 35 and 44 years of age (56.7%). Caregivers of children with inhibitors reported significantly higher median total burden scores (99.0 vs. 76.5, P < 0.0001) and median burden-VAS scores (5.5 vs. 3.0, P < 0.0001), as compared to those caring for children without inhibitors. A similar trend was seen across all the six burden domains, with greatest difference in the median burden scores observed in the 'personal sacrifice' (3.2 vs. 2.0) and 'transportation' (3.3 vs. 2.3) domains. Burden of caregivers should be considered when assessing the psychosocial aspects of managing patients with inhibitors. PMID:25273645
De Fazio, Pasquale; Ciambrone, Paola; Cerminara, Gregorio; Barbuto, Elvira; Bruni, Antonella; Gentile, Patrizia; Talarico, Amalia; Lacava, Roberto; Gareri, Pietro; Segura-García, Cristina
Objective Individuals suffering from dementia are affected by a progressive and significant global deterioration and, consequently, might require longer assistance in the advanced stage of the illness. The illness is a great burden on the person who takes care of a patient, namely, the caregiver. This study aims to analyze the presence and relationship of specific sociodemographic variables, subjective burden, and depressive symptoms among caregivers of patients with dementia. Methods The participants of this study were caregivers at a health care unit for the elderly in southern Italy. An evaluation of the burden of patients with dementia on caregivers was carried out using the Caregiver Burden Inventory (CBI) and depressive symptoms using the Self-Rating Depression Scale (SDS). Results A total of 150 caregivers completed the study. In all, 83 (55%) caregivers showed a total CBI score ≥36, of whom 70% showed pathological depression scores in SDS. According to SDS, 28 (19%) caregivers showed a total CBI score from 24 to 36, of whom 32% were depressed. Depression was present in 5% of the caregivers whose CBI score was <24. Hence, an association between burden and depression was evident (χ2=47.446, P<0.001). A multiple linear regression analysis showed that depression (adjusted R2=0.622, F=50.123, P<0.001) was associated with higher physical (β=0.666, P=0.001) and developmental (β=0.712, P<0.001) burdens, lower socioeconomic status (β=−4.282; P=0.002), higher level of urbanicity (β=3.070; P=0.012), and advanced age (β=2.132; P=0.08). Conclusion Our study confirms the presence of depressive symptoms in a large number of caregivers with high burden. Nevertheless, this study demonstrates that depressive symptoms are mainly associated with sociodemographic variables and, to a lesser degree, physical and developmental burdens. PMID:26170648
Creado, Dean A.; Parkar, Shubhangi R.; Kamath, Ravindra M.
Background: A chronic mental illness such as schizophrenia is a challenging task for caregivers especially in the current era of de-institutionalization. In India, few studies have attempted to directly determine the relationship between coping mechanisms and burden; in the West, studies have found that improved coping in family members can decrease the perceived burden. Aim: To evaluate the burden and coping of caregivers in relation to the level of functioning in patients with chronic schizophrenia. Methods: The sample was 100 patients with their primary caregivers attending a Psychiatry OPD. Patients were assessed on the Global Assessment of Functioning (GAF) scale while caregivers were administered the Burden Assessment Schedule (BAS) and Mechanisms of Coping (MOC) scale. Results: Fatalism and problem-solving were the two most preferred ways of coping. Problem-focused coping, i.e. problem-solving and expressive-action decreased the burden of caregivers, while emotion-focused coping, i.e. fatalism and passivity, increased it. As the level of functioning of the patient decreased, the significance with which the coping mechanisms influenced the burden, increased. The use of problem-solving coping by caregivers showed a significant correlation with higher level of functioning in patients. Conclusion: Coping mechanisms such as problem-solving can decrease the burden of illness on caregivers and may even improve the level of functioning of patients. PMID:20703411
Williams, Phoebe D; Williams, Kirstin A; Williams, Arthur R
Pediatric cancer diagnoses affect the entire family: parents, well siblings, the ill child, and others. The objective of this study was to review nursing studies on parental caregiving of children with cancer, family impact, and costs. The study used inclusion/exclusion criteria and family systems theory, self/dependent-care, and symptom management (monitoring, alleviation) concepts. Regarding "levels of evidence," 3 studies were Level II; 7 were Level IV; 7 were Level VI; 1 review was Level V and the second was Level I. Of 19 studies: 11 were qualitative; 4, quantitative; 2 were mixed methods. Content analysis themes were: Parental caregiving and family impact, economic burden. Conclusions were that (a) qualitative studies are predominant; findings supported quantitative findings; (b) quantitative nursing studies are less common: found one longitudinal, randomized controlled trial (RCT) focused on outcomes of an intervention for well siblings and parents, implemented by Clinical Nurse Specialists, CNSs; (c) few quantitative studies with large samples were found, especially ones with theoretical models of the family system and measures of illness impact on families; and (d) "mixed methods" longitudinal nursing research is illustrated. There is a need for "evidence-based" practice (EBP) nursing studies of interventions focused on parent education/support/assistance; respite care, and increasing family/well sibling knowledge/other information on the child's illness. PMID:24261317
Cui, Bo; Cui, Li-Ying; Liu, Ming-Sheng; Li, Xiao-Guang; Ma, Jun-Fang; Fang, Jia; Ding, Qing-Yun
Background: The spectrum of abnormal behaviors in amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) has been described, but its practical meaning, namely its impact on caregiver burden, has not been clearly documented in Chinese population. This study aimed to assess the distribution of abnormal behaviors in Chinese population, and to analyze the relationship between behavior changes and caregiver burden. Methods: Sixty-five patients with ALS/MND have been consecutively enrolled into registry platform of Peking Union Medical College Hospital. An investigation was performed to these patients and their caregivers using the revised ALS function rating scale, Frontal Behavioral Inventory-ALS version, the Frontal Assessment Battery, and the Caregiver Burden Inventory. Results: Twenty-eight (43.1%) patients displayed abnormal behaviors of varying degrees, with one fulfilling the diagnostic criteria of frontotemporal lobe degeneration. Irritability, logopenia, and inflexibility ranked top 3 of abnormal behavior list. Correlation analysis revealed that the degree of behavioral change and frontal cognitive status were significantly associated with caregiver burden, with more extensive impact from disinhibitive behaviors. Analysis of covariance analysis showed that after associated factors were corrected, caregivers of patients with moderate to severe behavior change reported significantly heavier developmental burden, physical burden, and total burden than those with no behavioral change. Conclusions: Neurobehavioral symptoms could present in around 40% of Chinese patients with ALS/MND, and the distribution of these behaviors was also unique. Besides, abnormal behaviors were highly related to caregivers’ burden. PMID:26315075
Chauhan, Ramesh Chand; Rai, Sanjay Kumar; Kant, Shashi; Lodha, Rakesh; Kumar, Nand; Singh, Neelima
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
Kim, Suk-Sun; Oh, Kyeung Mi; Richards, Kathy
The purpose of this secondary analysis study was to determine whether care recipients' nighttime sleep patterns, medical comorbidity, observed nocturnal agitation behaviors, and caregivers' perceptions of nocturnal agitation behaviors in care recipients with dementia are associated with caregiver burden. Sixty care recipient-caregiver dyads, comprising older adults with geriatrician-diagnosed dementia living at home with caregivers, participated. Caregivers' perceptions of the frequency of care recipients' nocturnal agitation behaviors were associated with caregiver burden; however, objective, real-time data on the frequency of nocturnal agitation behaviors were not associated with burden. Care recipients' increased minutes of wakefulness before falling asleep and severe cognitive impairment with musculoskeletal/integument and neurological comorbidities were associated with higher caregiver burden. These results suggest that targeted interventions to reduce sleep onset latency, medical comorbidity, and caregivers' perception of frequency of nocturnal behaviors may reduce caregiver burden. PMID:24877599
Bajaj, Jasmohan S.; Wade, James B.; Gibson, Douglas P.; Heuman, Douglas M.; Thacker, Leroy R.; Sterling, Richard K.; Stravitz, R. Todd; Luketic, Velimir; Fuchs, Michael; White, Melanie B.; Bell, Debulon E.; Gilles, HoChong; Morton, Katherine; Noble, Nicole; Puri, Puneet; Sanyal, Arun J.
Objectives Cirrhosis and hepatic encephalopathy (HE) can adversely affect survival, but their effect on socioeconomic and emotional burden on the family is not clear. The aim was to study the emotional and socioeconomic burden of cirrhosis and HE on patients and informal caregivers. Methods A cross-sectional study in two transplant centers (Veterans and University) of cirrhotic patients and their informal caregivers was performed. Demographics for patient/caregivers, model-for-end-stage liver disease (MELD) score, and cirrhosis complications were recorded. Patients underwent a cognitive battery, sociodemographic, and financial questionnaires. Caregivers were given the perceived caregiver burden (PCB; maximum = 155) and Zarit Burden Interview (ZBI)-Short Form (maximum = 48) and questionnaires for depression, anxiety, and social support. Results A total of 104 cirrhotics (70% men, 44% previous HE, median MELD 12, 49% veterans) and their caregivers (66% women, 77% married, relationship duration 32 ± 14 years) were included. Cirrhosis severely impacted the family unit with respect to work (only 56% employed), finances, and adherence. Those with previous HE had worse unemployment (87.5 vs. 19%, P = 0.0001) and financial status (85 vs. 61%, P = 0.019) and posed a higher caregiver burden; PCB (75 vs. 65, P = 0.019) and ZBI (16 vs. 11, P = 0.015) compared with others. Cognitive performance and MELD score were significantly correlated with employment and caregiver burden. Veterans and non-veterans were equally affected. On regression, depression score, MELD, and cognitive tests predicted both PCB and ZBI score. Conclusions Previous HE and cognitive dysfunction are associated with worse employment, financial status, and caregiver burden. Cirrhosis-related expenses impact the family unit's daily functioning and medical adherence. A multidisciplinary approach to address this burden is required. PMID:21556040
Sharma, Manoj Kumar
Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents' distress and enabling them to handle the dysfunction in users. PMID:27114629
Wicks, M N; Milstead, E J; Hathaway, D K; Cetingok, M
Improved quality of life and physical functioning among renal transplant recipients have been documented; however, little of the literature has addressed the effects of transplantation on family caregivers. The purpose of this exploratory descriptive study was to characterize the level of subjective burden, quality of life, and self-rated health of caregivers who assist family members prior to transplantation as well as at 6 months following. The study sample included 19 caregivers of 19 renal transplant recipients. In general, caregiver burden, quality of life, and self-rated health did not improve following patients' transplants. In addition, 9 of 19 family caregivers reported increased burden. Because much of healthcare is family-based and greater reliance on family support seems inevitable, further studies are needed to examine the impact of transplantation on the family as well as the impact of the family on patients' posttransplant outcomes. PMID:9866547
Sharma, Manoj Kumar
Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents’ distress and enabling them to handle the dysfunction in users. PMID:27114629
Milbury, Kathrin; Badr, Hoda; Fossella, Frank; Pisters, Katherine M.; Carmack, Cindy L.
Purpose While spouses play a vital role in the care of cancer patients, caregiving exerts a physical and psychological toll. Caregiving burden may not only compromise spouses’ quality of life but also the quality of care and support they are able to provide. Consequently, spousal caregiving burden may also negatively impact patients’ psychological adjustment. However, the effect of caregiving burden on patients’ psychological distress is unknown. Thus, this 6-month longitudinal study examined the associations between caregiving burden and distress in both lung cancer patients and their spouses. Methods Patients and their spouses individually completed questionnaires within 1 month of treatment initiation (baseline) and at 3-month and 6-month follow-up. Distress was measured with the Brief Symptom Inventory and caregiving burden with the Caregiver Reaction Assessment. Results Multilevel modeling of data from 158 couples revealed that baseline spouses’ reports of caregiving-related health problems were significantly associated with 3-month (p<0.001) and 6-month (p=0.01) follow-up distress in both patients and spouses even when controlling for baseline distress and dyadic adjustment. Further, there was evidence that baseline spouses’ reports of schedule disruption (p=0.05) predicted 3-month patients’ distress and baseline spouses’ reports of financial strain (p<0.05) and lack of support (p<0.10) predicted their own distress at 6-months. Conclusion Caregiving burden is problematic for both patients and spouses. Couples in which spouses report caregiving-related health problems may be at particular high risk of long-term elevated distress. Targets of future couple-focused interventions such as self-care and use of social support are discussed. PMID:23546537
Qadir, Farah; Gulzar, Wajiha; Haqqani, Sabahat; Khalid, Amna
Pakistan is 1 of 5 countries with the highest projected increase in prevalence of dementia in the Asia Pacific region (Access Economic, 2006), where there is a lack of structured support network for caregivers in general and for dementia caregivers in specific. The caregivers and other related individuals predominantly rely on traditional familial support for caregiving. This approach places immense burdens on the familial caregivers (Shaji, 2009). In Pakistan, there is paucity of research evidence on care of patients with dementia and the needs of caregivers dealing with such patients. This study explores awareness among caregivers, their attitudes toward family members suffering from dementia, and their experience of burden. In-depth interviews were conducted with 12 caregivers of patients diagnosed with dementia in Rawalpindi/Islamabad Pakistan. There was a considerable lack of awareness about dementia as an illness among the caregivers. They reported a conflict between emotional and religious commitments to nurture older adult relatives and their experience of psychological, physical, and economic burden, resulting in occasional episodes of carelessness and violence toward them. The study indicated that women, particularly those who were employed outside of the home, reported higher levels of stress. It is suggested that support from extended family in all forms was perceived as a concrete form of stress relief by the primary caregiver. The findings of this study indicate that the social and financial burden of dementia on families of caregivers in Pakistan may be exacerbated if they do not have support. This indicates a need for multipronged intervention from both government and nongovernment organizations, as well as the community, to develop programs for caregivers that are nested within the cultural context of filial piety in Pakistan. These strategies should also be gender sensitive, giving priority to more at-risk groups. PMID:24579270
Geriani, Disha; Savithry, Kochukarottil Satish Babu; Shivakumar, Seemanthini
Background: Schizophrenia is a mental disorder where the caregivers are likely to face increasing levels of burden and stress. The present study aims to explore the relation between burden of care on the caregivers of schizophrenic patients with various psychological parameters including their coping strategies, personality type, overall quality of life and socio-demographic details. Materials and Methods: The participants included in the study (n=110) were administered a socio-demographic data sheet and questionnaires to assess their personality type, burden, quality of life, and coping mechanisms of having a schizophrenic in the family. These questionnaires were administered in individual setting. Their informed consent was taken prior to the administration of tools and their privacy was taken care of. The data obtained was analysed statistically. Results: Most of the caregivers were females. The caregivers were observed to have moderate and high levels of burden. Burden on the caregivers showed a significant correlation with psychoticism and their overall quality of life. A significant correlation was seen between the levels of coping and extrovert type of personality, and also with the environmental health of the caregivers. Caregivers belonging to nuclear families coped better than those of joint families. Conclusion: The study concludes that certain personality traits like psychoticism and certain social traits such as living in joint families can increase the risk of caregiver burden in looking after family members suffering from schizophrenia. A need for psychological assistance for the vulnerable caregivers to help them reduce the burden levels and employ positive coping strategies has, therefore, been emphasized in our study. PMID:25954685
Stuart, Melissa; McGrew, John H.
The study examined factors impacting caregiver burden following diagnosis of an autism spectrum disorder (ASD). Primary caregivers of children diagnosed with an ASD within the past 6 months (n = 78) were assessed on variables thought to influence outcomes associated with family stress as proposed within the double ABCX model of family adaptation,…
Reis, M F; Gold, D P; Andres, D; Markiewicz, D; Gauthier, S
This study tested predictions specifying the influence of caregiver personality traits on negative outcomes of caregiving, health complaints and burden. Two-hundred and thirteen caregivers, who were caring for family members with dementia, were interviewed and their relatives were assessed on cognitive status and aggression. At follow-up conducted twenty-four months later, forty-five caregivers were still continuing to provide home care for their dependents. Caregivers who scored higher on a measure of neuroticism experienced higher levels of burden and health complaints both at initial and follow-up assessment. Caregiver extraversion-introversion did not influence the experience of caregiving. At both initial and final assessment, the ability to enjoy some aspects of caregiving, recreational activities, and satisfaction with social support from family and friends mitigated negative outcomes of caregiving, while appraising the dependent as more troublesome increased negative outcomes. Caring for more cognitively impaired and more aggressive dependents and being female increased negative outcomes initially. Personality traits and most other study variables demonstrated significant continuity across time for caregivers continuing home care. PMID:7875917
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
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. PMID:26860217
Wong, Daniel Fu Keung; Tsui, Helen Kam Pui; Pearson, Veronica; Chen, Eric Yu Hai; Chiu, Siu Ning
This study explored the types of family burdens, mental health and Chinese health beliefs of Chinese caregivers with relatives suffering from a serious mental illness. It also examined the impacts of these beliefs on caregivers' burdens and mental health. A structured questionnaire was administered to 125 Chinese caregivers in out-patient clinics in Hong Kong. Measures included distress (General Health Questionnaire), family burdens and belief in traditional Chinese medicine. Family burdens exerted a significant impact on the mental health of caregivers. Significant differences were found between believers and non-believers of traditional Chinese medical beliefs in terms of financial burdens, disruptions to family interactions and decline in physical health. No [corrected] moderating effect of Chinese health beliefs on family burdens and mental health was found. The lack of a moderating effect of health belief on family burdens may be related to caregivers' changes in perspectives from a traditional Chinese cultural perspective to a psychosocial and personality perspective. Implications for research and service development are discussed. PMID:15709648
Zeng, Li; Zhu, Xiaoping; Meng, Xianmei; Mao, Yafen; Wu, Qian; Shi, Yan; Zhou, Lanshu
Objectives: This study aimed to explore the experience of seniors’ family caregivers with regarding the responsibility, burden and support needs during caregiving in Shanghai, China. Materials and methods: An exploratory, descriptive, qualitative design was used and a semi-structure interview was conducted. A convenience sample of 11 participants in two community service centers in Shanghai was recruited. Data saturation guided the size of the sample. The Colaizzi method of empirical phenomenology was used for interviewing and analyzing data obtained from 11 caregivers. Results: Three major themes were found: It is a hard work; It is my responsibility; Social support is not enough. Conclusion: The findings of the study are practical and helpful for health care providers to develop appropriate caregiver support services, to balance the responsibility and burden of caregivers, and to consider the factors influencing the utility of support services. PMID:25126186
Friedemann, Marie-Luise; Buckwalter, Kathleen C.
This study described and contrasted family caregivers and explored the effect of gender and family relationship on the caregiver’s role perception, workload, burden, and family help. Home care agencies and community organizations assisted with the recruitment of 533 multicultural, predominantly Latino caregivers who were interviewed at home. The Caregiver Identity Theory guided the study. Survey instruments were standardized tools or were constructed and pretested for this study. Descriptive statistics and t-test analyses assisted in describing the sample and multivariate analyses were used to contrast the caregiver groups. Findings suggested a gendered approach to self-appraisal and coping. Men in this predominantly Latino and Caribbean sample felt less burden and depression than women who believed caregiving is a female duty. Family nurses should pay attention to the most vulnerable groups: older spouses resistant to using family and community resources and hard-working female adult children, and assess each family situation individually. PMID:24777069
Jones, Simeon B W; Whitford, Hayley S; Bond, Melissa J
This study assessed psychological morbidity and resilience, including the subjective burden of 76 caregivers of elderly cancer survivors utilizing a cross-sectional questionnaire. Participants were mainly elderly female spouses, sole-caregiving > 35 hours per week; 19.1% and 23.6% reported moderate or greater anxiety and depression, respectively. A significant regression model found depression, emotion-focused coping, and greater years since diagnosis as significant predictors of subjective caregiver burden. Thus, caregiving appears a dominant role for this group and the Brief Assessment Scale for Caregivers of the Medically Ill (BASC) appears to be an efficient screening tool for psychological morbidity in this under-supported group. PMID:25658457
Oh, Heykyung; Lee, Eun-Kyoung Othelia
This study examines caregiver burden and social supports perceived by mothers raising children with developmental disabilities in South Korea. Mothers residing in the metropolitan areas of Seoul (n = 181) responded to the mail survey with a 56.6% response rate. Respondents expressed a high level of overall burden, particularly in financial…
Datta, Soumitra Shankar; Russell, Paul Swamidhas Sudhakar; Gopalakrishna, Seetha Cookemane
A study involving 31 Indian families with a child (ages 3-16) with mental retardation found expressed emotion toward the child predicted a high level of burden among the caregivers. Age of child and family income significant in the univariate analysis were also clinically associated with burden in a developing country. (Contains references.)…
Schulz, Richard; Chelluri, Lakshmipathi; Pinsky, Michael R.
Background: The outcomes of informal caregivers of survivors of critical illness likely depend on patient characteristics, which may change over time. To date, few studies have examined patient-specific predictors of post-ICU informal caregiver burden, and none has tested whether predictors vary after hospital discharge. Methods: We designed a prospective, longitudinal observational study, enrolling 48 patient-caregiver dyads from four ICUs in a university hospital. Informal caregiver depression symptoms were measured with the Center for Epidemiologic Studies Depression scale. Lifestyle disruption was measured with the Activity Restriction Scale. Linear regression models were built to test for patient- and caregiver-specific predictors of depression symptoms and lifestyle disruption 2, 6, and 12 months after ICU admission. Results: Patients had a mean (SD) age of 52.5 (19.7) years, 67% were men, median (interquartile range) Acute Physiology and Chronic Health Evaluation score was 52 (38.5, 65). The caregivers had a mean (SD) age of 52.8 (12.8) years, 91.2% were women, and 48% were spouses. Predictors of caregiver depression symptoms were patient gender (men) at 2 and 12 months and tracheostomy at 12 months. Predictors of lifestyle disruption were patient education (more common among high school graduates) and patient gender (men) at 2 months, and tracheostomy, functional dependency, and patient gender (men) at 12 months. Conclusions: The determinants of post-ICU informal caregiver burden likely depend on characteristics of the patient as well as the caregiver and may vary over time. Further research is necessary to better understand the longitudinal determinants of burden in order to develop more effective caregiver interventions. PMID:19762552
Gaugler, Joseph E.; Mittelman, Mary S.; Hepburn, Kenneth; Newcomer, Robert
Prior research has yielded discrepant findings regarding change in caregiver burden or depressive symptoms after institutionalization of persons with dementia. However, earlier studies often included small post-placement samples. In samples of 1,610 and 1,116 dementia caregivers with up to 6-months and 12-months post-placement data, respectively, this study identified predictors of change in caregiver burden and depressive symptoms following nursing home admission (NHA). Descriptive analyses found that caregivers reported significant and considerable decreases in burden in the 6- and 12-month post-placement panels. A number of variables predicted increased burden and depressive symptoms in the 6- and 12-month post-placement panels. Pre-placement measures of burden and depressive symptoms, site (Florida), overnight hospital use, and spousal relationship appear to result in impaired caregiver well-being following NHA. Incorporating more specific measures of stress, considering the influence of health-related transitions, and coordinating clinical strategies that balance caregivers’ needs for placement with sustainability of at-home care are important challenges for future research. PMID:19485656
Pagani, M; Giovannetti, A M; Covelli, V; Sattin, D; Leonardi, M
Involvement of family members is crucial to provide daily informal caring to patients in vegetative state and minimally conscious state. Previous studies showed that perceived burden is a risk factor for informal caregivers as it increases psychophysical distress. This research further investigated the relationship between these factors and aimed at providing a model that thoroughly describes this mechanism of functioning. In the frame of a national survey on people with disorders of consciousness, 487 informal caregivers of children and adult patients in vegetative and minimally conscious state were administered measures of depression, anxiety, caregiver needs, and family strain. Regression models proposed by Baron and Kenny and the Sobel test were adopted to investigate the relationship between depressive and anxiety symptoms, perceived burden and needs expressed. Our study shows that the relation between those symptoms and needs is mediated by burden, where higher burden accentuates and lower burden mitigates the needs expressed by caregivers. Our findings demonstrate that psychosocial components of the burden perceived by caregivers of patients with disorders of consciousness play a key role in shaping those caregivers' needs, especially their needs for information and communication. We recommend implementation of comprehensive steps to meet the needs of these caregivers, steps that incorporate improved economic and public health programs, social support, and use of psychological interventions to ameliorate caregivers' psychological distress and decrease their burden. PMID:24913784
Mendez-Luck, Carolyn A.; Kennedy, David P.; Wallace, Steven P.
Objectives This study examined how women in a Mexico City suburb conceptualized the construct of burden within the context of giving care to older relatives. Methods Data were collected on forty-one women through semi-structured interviews regarding their caregiving experiences to elderly relatives. Phenomenological principles were used to analyze meanings and understandings of caregiving experiences. Results Burden was a multi-dimensional construct that referred to specific situations that made caregivers feel emotionally or physical “heavy.” Burden also referred to “being a burden” by being in the way, making things difficult, or being a ‘weight’ on caregivers' shoulders. However, women in this study also viewed burden as a positive sacrifice that involved love, initiative, and good will. Discussion This study is an important first step in defining the ways in which caregiving is positively and negatively meaningful for Mexican caregivers and their families. Our findings offer an additional dimension of caregiver burden to broaden our understanding and measurement of the construct. The development of culturally appropriate instruments to measure caregiving burden in Mexico is necessary to provide an empirical foundation for policy recommendations that address the growing need for institutional support of caregivers. Moreover, our findings suggest that researchers studying caregiving in Mexico should think about how burden is measured on existing instruments before adapting them for widespread use. PMID:18324460
Hayslip, Bert, Jr.; Han, GiBaeg; Anderson, Cristina L.
This study examined similarities and differences between active caregivers (adult children and spouses whose family member had Alzheimer's disease) and not-as-yet caregiving adults (adult children and spouses whose family members are older, but do not as yet suffer from Alzheimer's disease). The objective was to determine what factors predict…
Khan, Zainab; Braich, Puneet S.; Rahim, Karim; Rayat, Jaspreet S.; Xing, Lin; Iqbal, Munir; Mohamed, Karim; Sharma, Sanjay; Almeida, David
Purpose/Background. This study reports the degree of burden and the proportion at risk for depression among individuals who provide care to visually impaired patients. Study Design. This is clinic-based, cross-sectional survey in a tertiary care hospital. Methods. Caregivers were considered unpaid family members for patients whose sole impairment was visual. Patients were stratified by vision in their better seeing eye into two groups: Group 1 had visual acuity between 6/18 and 6/60 and Group 2 were those who had 6/60 or worse. Burden was evaluated by the Burden Index of Caregivers and the prevalence of being at risk for depression was determined by the Center for Epidemiologic Studies Depression scale. Results. 236 caregivers of 236 patients were included. Total mean BIC scores were higher in Group 2. Female caregivers, caregivers providing greater hours of care, and caregivers of patients who have not completed vision rehabilitation programs are at higher risk for depression. PMID:27051859
Viwattanakulvanid, Pramon; Kaewwilai, Lalita; Jitkritsadakul, Onanong; Brenden, Neil R; Setthawatcharawanich, Suwanna; Boonrod, Nonglak; Mekawichai, Pawut; Bhidayasiri, Roongroj
Parkinson's disease (PD) imposes a burden on those who care for the person afflicted. The objective of this study was to assess and analyze the main determinants of caregivers' burden, especially the nocturnal manifestations of PD. This multi-center, national, cross-sectional study included 89 patient-caregiver pairs. Caregiver self-assessments were performed with Hospital Anxiety and Depression Scale (HADS) and Zarit Caregiver Burden Interview (ZCBI). Patient self-assessments were performed with Modified Parkinson's Disease Sleep Scale (MPDSS), Nocturnal Akinesia Dystonia and Cramp Score (NADCS), HADS and Parkinson's Disease Quality of Life Questionnaire (PDQ-8). Most of the caregivers were employed women, and the majority had been permanently taking care of the patient for 6.8 ± 5.4 years. The study found that the ZCBI mean score of the caregivers significantly worsened as patients became more dependent (HY: 4-5, p = 0.036), and the mean ZCBI score of spousal caregivers (19.4; SD 15.5) was significantly higher than that of the offspring group (11.7; SD 7.9) (p = 0.008). Disease duration (r = 0.22), NADCS (r = 0.38), MPDSS (r = -0.36), PDQ-8 SI (r = 0.39) and HADS (total, anxiety and depression) scores (r = 0.46-0.49), and HADS (total, anxiety and depression scores (r = 0.37-0.52), had significant negative effect on caregivers' burden. Moderate association was found on MPDSS item 14 (r = 0.38) and NADCS akinesia score (r = 0.37). Patients' anxiety, nocturnal akinesia and the feeling of tiredness and sleepiness upon awakening in the morning were independent predictors of caregivers' burden (adjusted R2 = 0.46). Based on these findings, treatment of early mood symptoms of the patients and caregivers at risk may be helpful for the effective management of PD and it is also important to have well-designed psycho-educational and multicomponent interventions in the community for caregivers of persons with PD. PMID:24682360
This study determines the relative effects of functional impairment, cognitive impairment, and duration of care of the elderly on caregivers' depression, and identifies the factors that influence this relationship. The variables were entered individually, based on a logical order in the path modeling. For mediators, the order of three types of…
Anum, Jawaria; Dasti, Rabia
The research determined the relationship of caregiving burden, spirituality and psychological well-being of parents of Pakistani thalassemic patients in a crosssectional research design. The sociodemographic form, Montgomery-Borgatta burden measure (Montgomery et al. in Who should care for the elderly? An east-west value divide. World Scientific, River Edge, pp 27-54, 2000), Multidimensional Measure of Islamic Spirituality (Dasti and Sitwat in J Muslim Ment Health 8(2):47-67, 2014. doi: 10.3998/jmmh.10381607.0008.204 ) and Ryff Scale of Psychological Well-being (Ryff in J Pers Soc Psychol 57(6):1069-1081, 1989. doi: 10.1037/0022-35188.8.131.529 ) were administered on a sample of 80 parents (32 fathers and 48 mothers) recruited from different Thalassemic Centers of Lahore city, Pakistan. Data were analyzed through correlation and mediational analyses. Results indicated that the caregiver burden was negatively correlated with the psychological well-being and the domains of spirituality, while the psychological well-being and spirituality were positively correlated. We identified that the caregiver burden has direct effect on the psychological well-being of the parents and it influences the psychological well-being through the pathway of the two domains of spirituality, i.e., self-discipline and meanness-generosity. These results highlighted the role of spirituality upon the psychological well-being of caregivers, which could be utilized to prevent pathological influences (such as hard feelings, hopelessness, depressed mood, anxiety, and relationship problems) of caregiver burden and enhance psychological well-being through spiritual counseling. Caregivers can work on their well-being and burden by disciplining their lives and forgoing hard feelings toward others. PMID:26400043
Göriş, Songül; Klç, Züleyha; Elmal, Ferhan; Tutar, Nuri; Takc, Özlem
This descriptive study was conducted to determine the care burden and social support levels of caregivers to patients with chronic obstructive pulmonary disease (COPD). The primary caregivers of 112 patients with COPD hospitalized in the chest diseases service of a university hospital were involved in the study. Data of the study were collected by using the Patient and Caregiver Information Form, which was prepared by reviewing the literature, Katz Index of Independence in Activities of Daily Living, Zarit Burden Interview, and Multidimensional Scale of Perceived Social Support. While the care burden mean score of caregivers of patients with COPD was 40.91 ± 20.58, the mean score of Multidimensional Scale of Perceived Social Support was 54.13 ± 18.84. In this study, it was determined that female caregivers, as well as individuals stating that their physical and psychological health was affected and those having difficulty giving care and needing help, had higher levels of care burden, whereas the spouses, as well as individuals with lower levels of income and those stating that their physical and psychological health was affected, had lower levels of social support. PMID:27309411
Horwitz, A V; Reinhard, S C
The policy of community care for the seriously mentally ill increases the caregiving duties and resulting burden on families with members who have a mental illness. Ethnicity is one factor that might have an important impact on the caregiving duties family members perform and the burden that results from these duties. This study uses interviews with 78 parents and 70 siblings of patients scheduled for imminent release from a state mental hospital. The findings indicate that Black and White parents have equivalent caregiving duties, but White parents report substantially more caregiver burden. Black siblings report more caregiving duties than White siblings but report less caregiver burden. These ethnic differences remain after controls for income, gender, age, diagnosis, perceived stigma, and coresidence. The results indicate that ethnicity can be a critical factor affecting levels of informal caretaking for persons with serious mental illnesses. PMID:9113139
This preliminary study compares the family functioning, caregiver burden, and coping abilities between mothers of 300 children with developmental disorders and mothers of 100 children with no such disorders in the Bedouin community in Israel. The mothers completed the McMaster Family Assessment Device Scale, the Caregiver Burden Index, and the…
Möller-Leimkühler, Anne Maria; Jandl, Mitja
While the impact of mentally ill patients' perceptions of their key relatives' expressed emotion is well examined with regard to relapse, there is a paucity of evidence concerning the impact on their key relatives' burden. The present study aims to evaluate the relative prognostic value of expressed and perceived emotion on caregivers' stress outcome within a 3-year follow-up period. Yearly follow-up data of the key relatives of 16 first-hospitalized schizophrenic and 34 depressed patients were available including expressed and perceived emotion and different dimensions of caregivers' stress outcome: objective and subjective burden, well-being, psychological symptoms and subjective quality of life. Multiple linear regression analyses were computed to assess the relative impact of expressed and perceived emotion. All dimensions of burden were significantly and consistently correlated with caregivers' expressed emotion and patients' perceived criticism on the bivariate level. On the multivariate level, however, expressed criticism appeared to be the most relevant predictor, followed by perceived resignation. Data indicate that the impact of the patients' perceived criticism on caregivers' stress outcome is limited. More attention should be paid to patients' perceived resignation which may be an unidentified stress contributor for caregivers so far. PMID:21174110
Ghane, Golnar; Ashghali Farahani, Mansoureh; Seyedfatemi, Naima; Haghani, Hamid
Background Studies have shown that family caregivers of hemodialysis patients experience high levels of burden. However, these caregivers are often neglected, and no studies are available on the effectiveness of coping strategies on the burden of care among these caregivers. Objectives This study aimed to examine the effectiveness of problem-focused coping strategies (communication skills, anger management, and deep breathing) on the burden on caregivers of hemodialysis patients. Patients and Methods A randomized controlled clinical trial was conducted on 76 family caregivers of hemodialysis patients referred to Shahid Hasheminejad hemodialysis center in Tehran, Iran. The subjects were equally allocated into two groups of 38. Through a coin-tossing method, caregivers of patients who referred on even or odd days of the week were randomly assigned into the intervention group or the control group, respectively. The intervention group received four training sessions on problem-focused coping strategies, but the control group did not receive any intervention. Both groups answered the caregiver’s burnout inventory at the start and six weeks after the last educational session. Descriptive statistics, chi-square, Fisher’s exact test, independent-samples t-test, and Mann-Whitney U test were used to analyze the data. Results The majority of caregivers (54%) were in the age range of 35 - 55 years, female (68.4%), and married (70%). No significant difference was found between the baseline mean caregivers’ burden scores of the intervention and control groups (88.56 ± 11.74 vs. 84.97 ± 15.13, P = 0.308). However, the mean caregivers’ burden in the intervention group decreased, and the two groups were significantly different at the end of the study (58.77 ± 6.64 vs. 87.84 ± 11.74, P < 0.001). Conclusions The current study showed the effectiveness of problem-focused coping strategies on reducing the burden on caregivers of hemodialysis patients. Authorities and
Singh, Dinesh; Chaudoir, Stephenie R; Escobar, Maria C; Kalichman, Seth
Despite its benefits for people living with HIV/AIDS (PLWHA), home-based care (HBC) may have negative effects on caregivers. Caregivers experience high levels of burden and may be targets of HIV-related prejudice and discrimination. In this cross-sectional survey of 358 caregivers from five hospices across KwaZulu-Natal, South Africa, 49 (13.7%) caregivers personally experienced discrimination as a result of caring for PLWHA. One hundred and seventy (47.5%) marked one or more items on the HIV stigma scale. Eighty-eight percent had low to moderate levels of caregiver burden. People with higher level of burden and higher income were more likely to hold stigmatizing beliefs. Caregivers with the following characteristics: support from a nurse, support from community careworker, HIV stigmatizing beliefs, and personal experience of discrimination as result of caring for PLWHA and low caregiver burden, had more than twice the odds of wanting to care for another PLWA in the future. Overall, caregivers in HBC experience low level of severe caregiver burden. The support offered to caregivers from the hospice and relatively low levels of discrimination encourage expansion of HBC programs for PLWHA. PMID:21400316
McManus, Beth M.; Carle, Adam; Acevedo-Garcia, Dolores; Ganz, Michael; Hauser-Cram, Penny; McCormick, Marie
This study described predictors of caregiver burden among parents of children with developmental disabilities. The sample, obtained from the 2005-2006 National Survey of Children With Special Health Care Needs, included 12,225 children, aged 5 to 17 years, with a developmental disability. Structural equation modeling assessed the relationships…
Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir
The present article is the first to consider the impact of intellectual disability on Bedouin-Arab families' caregiver burden, family functioning, marital quality, and sense of coherence. A random sample of 300 Bedouin-Arab parents with one or more intellectually disabled children, and a control group (n = 100) completed the McMaster Family…
Reine, G; Lancon, C; Simeoni, M C; Duplan, S; Auquier, P
The high prevalence and chronic evolution of schizophrenia are responsible for a major social cost. The adverse consequences of such psychiatric disorders for relatives have been studied since the early 1950s, when psychiatric institutions began discharging patients into the community. According to Treudley (1946) "burden on the family" refers to the consequences for those in close contact with a severely disturbed psychiatric patient. Grad and Sainsbury (1963) and Hoenig and Hamilton (1966) developed the first burden scales for caregivers of severely mentally ill patients, and a number of authors further developed instruments trying to distinguish between "objective" and "subjective" burden. Objective burden concerns the patient's symptoms, behaviour and socio-demographic characteristics, but also the changes in household routine, family or social relations, work, leisure time, physical health.... Subjective burden is the mental health and subjective distress among family members. While the first authors referred to those problems which are deemed to be related to, or caused by the patient, Platt et al. (1983) tried to distinguish between the occurrence of a problem, its alleged aetiology, and the perceived distress, when developing the SBAS questionnaire. These authors also proposed separate evaluations of behavioral disturbance and social performance by relatives, and a report of extra-disease stressors in family life. The SBAS is actually the most complete, but also complex instrument for evaluating burden in caregivers. Since 1967 Pasamanick and others proposed questionnaires for burden evaluation in relatives of schizophrenic patients. Relatives may be included in specific psychoeducational programs, but few of these programs have been evaluated in terms of caregiver burden. The theoretical approach in schizophrenia was not different from that one adopted in mentally ill population. Some instruments were validated first in a mentally ill group and then
Stella, Florindo; Canonici, Ana Paula; Gobbi, Sebastião; Santos-Galduroz, Ruth Ferreira; de Castilho Cação, João; Gobbi, Lílian Teresa Bucken
OBJECTIVE: To analyze the effects of motor intervention on the neuropsychiatric symptoms of Alzheimer's disease and on the caregivers' burden. DESIGN: This is a controlled trial evaluating the effects of a motor intervention program on the neuropsychiatric symptoms. SETTING: The intervention was performed on community patients from two university centers specializing in physical exercise for the elderly. SUBJECTS: Patients with Alzheimer's disease were divided into two groups: sixteen received the motor intervention and sixteen controls (five controls were excluded because of clinical intercurrences). INTERVENTIONS: Aerobic exercises (flexibility, strength, and agility) and functional balance exercises were conducted over six months for 60 minutes three times per week. MAIN MEASURES: Psychopathological features of patients were evaluated with the Neuropsychiatric Inventory and Cornell Scale for Depression in Dementia. Caregivers were evaluated using the Neuropsychiatric Inventory-Distress and Burden Interview. A two-way analysis of variance (ANOVA) was applied to observe interactions (pre- vs. post-intervention; participants vs. controls). RESULTS: Patients from the intervention presented a significant reduction in neuropsychiatric conditions when compared to controls (Neuropsychiatric Inventory: F∶11.12; p = 0.01; Cornell Depression scale: F∶11.97; p = 0.01). The burden and stress of caregivers responsible for patients who participated in the intervention significantly decreased when compared to caregivers responsible for controls (Neuropsychiatric Inventory-Distress: F: 9.37; p = 0.01; Burden Interview: F: 11.28; p = 0.01). CONCLUSIONS: Aerobic exercise was associated with a reduction in the neuropsychiatric symptoms and contributed to attenuate the caregivers' burden. However, the researchers were not blinded to the patient's intervention status, which constitutes an important limitation of this study. PMID:21915483
Clougherty, Jane E; Kubzansky, Laura D; Spengler, John D; Levy, Jonathan I
Providing care for children with asthma can be demanding and time-intensive with far-reaching effects on caregivers' lives. Studies have documented childhood asthma symptom reductions and improved asthma-related quality of life (AQOL) with indoor allergen-reducing environmental interventions. Few such studies, however, have considered ancillary benefits to caregivers or other family members. Ancillary benefits could be derived from child health improvements and reduced caregiving burden or from factors such as improved living environments or social support that often accompanies intensive residential intervention efforts. As part of the Boston Healthy Public Housing Initiative (HPHI), a longitudinal single-cohort intervention study of asthmatic children, we examined trends in caregivers' quality of life related to their child's asthma (caregiver AQOL) using monthly Juniper Caregiver Asthma Quality of Life Questionnaires (AQLQ) for 32 primary caregivers to 42 asthmatic children aged 4 to 17 years. Longitudinal analyses were used to examine caregiver AQOL trends and their relationship to the child's AQOL, then to consider additional predictors of caregiver AQOL. Caregiver AQLQ improved significantly over the course of the study with overall improvements significantly correlated with child AQOL (p = 0.005). However, caregiver AQOL improved most in the months before environmental interventions, while children's AQOL improved most in the months following. Time trends in caregiver AQOL, controlling for child AQOL, were not explained by available social support or caregiver stress measures. Our findings suggest potential participation effects not adequately captured by standard measures. Future environmental intervention studies should more formally consider social support and participation effects for both children and caregivers. PMID:19184446
Kramer, Maeona K
Gender identity is a powerful aspect of self that shapes values, attitudes, and conduct. Family caregivers, particularly women, tend to forgo institutionalization of care recipients even when care demands are overwhelming. The reluctance of women to relinquish care raises questions about the relationship between gender identity and the bearing of burden. To illuminate the relationship between gender and burden, 36 adult women caring for highly dependent adults were asked to describe the nature of "self"; that is, how they characterized themselves as a person. Results were tabulated and critically examined in relation to stereotypical gender traits, as well as social and political processes that create gender dichotomies. Overall, self-characterizations indicated caregivers had internalized stereotypical female gender traits that support and facilitate the enduring of burden. PMID:16025695
On Wednesday, March 23, 51 older Americans came to Washington, DC, to deliver their unique messages concerning the need for long-term care and a health care system responsive to the needs of older Americans. HealthRIGHT, a coalition created to capture Americans' views on the health care system and what needs to be done to improve it, orchestrated the event. In an extraordinary briefing session in the Rayburn House Office Building, First Lady Hillary Rodham Clinton was present with congressional leaders to hear these stories. Several of the witnesses focused on Alzheimer's patients or their caregivers. CARING is pleased to include their stories here, as testimony to the major effect this terrible disease can have on a family. PMID:10171929
Holley, Caitlin K.; Mast, Benjamin T.
Purpose: Interest in anticipatory grief (AG) has typically focused on terminal diseases such as cancer. However, the issues involved in AG are unique in the context of dementia due to the progressive deterioration of both cognitive and physical abilities. The current study investigated the nature of AG in a sample of dementia caregivers and…
Nelson, Melissa M.; Smith, Maureen A.; Martinson, Brian C.; Kind, Amy; Luepker, Russell V.
Purpose: Caregivers of stroke patients may adapt to changes in patient functioning over time. If adaptation occurs, caregiver burden and health may be influenced more by worsening in patient functioning than static levels of functioning. This study examines the relationship between patients' baseline and changes in functioning and caregivers' subjective and objective burden as well as their health. Design and Methods: Only stroke patients who had caregivers were included in this analysis (N=356). Stroke patients (N=281) or their proxies (N=75) were interviewed within 4 months of hospital discharge and patients' medical records were abstracted. The primary caregiver also was interviewed at approximately the same time as the patient/proxy interview (N=356). In all but one of the 75 proxy cases, the proxy was the patient's caregiver. Binomial and ordinal logistic regression models were used. Results: Declining patient neurological functioning predicted greater objective burden and subjective burden relating to consequences for caregivers' personal lives, but did not predict caregiver health. Implications: The impact a patient's stroke has on a caregiver's personal life and the number of hours spent caring for the patient appear to be a function of the changes of the patient's status over time rather than a function of a “snapshot” of their functioning at baseline. If these results are confirmed, interventions to protect caregivers may be indicated for stroke patients who continue to decline after hospital discharge. PMID:18981274
Miyamoto, Yuki; Tachimori, Hisateru; Ito, Hiroto
The purpose of this study was to identify the impact of the behavioral, psychological, and functional symptoms of dementia on the burden of formal caregivers. A cross-sectional study was conducted among formal caregivers caring for residents with dementia in Japan. The Zarit Caregiver Burden Interview (ZBI) personal strain items, the Personal Self-Maintenance Scale (PSMS), and the Troublesome Behavior Scale (TBS) were used to assess the level of formal caregiver burden, activities of daily living (ADL), and behavioral and psychological symptoms of dementia (BPSD), respectively. The data from 445 respondents were analyzed using multiple linear regression analyses to predict the burden on formal caregivers. Disruptive behaviors, such as aggression, screaming, and a low ADL levels among residents with dementia were significantly correlated with higher formal caregiver burden. The results of this study support a positive relationship between BPSD, low ADL levels, and formal caregiver burden in caring for residents with dementia. These results illustrate the various characteristics of the burdens on staff members compared with those faced by individuals who provide informal care. PMID:20682402
Lai, Carlo; Luciani, Massimiliano; Morelli, Emanuela; Galli, Federico; Cappelluti, Roberta; Penco, Italo; Aceto, Paola; Lombardo, Luigi
The aim of the study was to test whether high levels of caregiver burden, as other confirmed predictors, are associated with the risk of prolonged grief disorder in caregivers of terminally ill patients. A predictive study was carried out in order to test the hypothesis. A demographic schedule, the Prolonged Grief 12 (PG-12), the Toronto Alexithymia Scale, Hamilton Anxiety Rating Scale, Hamilton Depression Rating Scale, and Caregiver Burden Inventory were administered to 60 caregivers of 51 patients who were admitted in Hospice. In the regression analysis, difficulty in recognizing emotions, total burden, depression, and developmental burden dimension were significant predictors of PG-12 levels. Findings showed that feeling of deprivation of existential expectations represents the greater risk factor for the prolonged grief disorder, among the burden dimensions. PMID:23689368
Flynn Longmire, Crystal V.; Knight, Bob G.
Purpose of the study: Although the Zarit Burden Interview (ZBI) is one of the most extensively used measures in research for caregiver burden, few researchers have examined its factor structure. Furthermore, though the ZBI has also been used in cross-group comparisons of burden, there have not been studies of whether or not it measures burden…
Background Brief family intervention may have a positive impact on family caregivers for patients with mental disorders. We assessed the effectiveness of a group psycho-educational program on family caregivers for patients with schizophrenia and mood disorders. Methods This randomized controlled trial was performed on 100 caregivers for patients with mental disorders attending the Isfahan Behavioral Sciences Research Center (IBSRC), in Isfahan, Iran. One hundred family caregivers of patients with schizophrenia (n = 50) and mood disorders (n = 50) were selected and assigned randomly to either a psycho-educational group intervention or routine care in each diagnosis category. The caregivers were followed for 3 months. Caregiver burden was assessed using the Zarit Burden Interview Results The mean scores of the Zarit caregiver burden decreased significantly for the group that participated in the psycho-educational program, while scores in the control group did not change significantly. Conclusions This group intervention program was effective to reduce the caregiver burden for both categories of mental disorders in the Iranian population. This group intervention program may improve the quality of life of patients and caregivers by improving the standards of care giving. Trial registration RCT registration number: IRCT138804272200N PMID:22853873
Kubzansky, Laura D.; Spengler, John D.; Levy, Jonathan I.
Providing care for children with asthma can be demanding and time-intensive with far-reaching effects on caregivers’ lives. Studies have documented childhood asthma symptom reductions and improved asthma-related quality of life (AQOL) with indoor allergen-reducing environmental interventions. Few such studies, however, have considered ancillary benefits to caregivers or other family members. Ancillary benefits could be derived from child health improvements and reduced caregiving burden or from factors such as improved living environments or social support that often accompanies intensive residential intervention efforts. As part of the Boston Healthy Public Housing Initiative (HPHI), a longitudinal single-cohort intervention study of asthmatic children, we examined trends in caregivers’ quality of life related to their child’s asthma (caregiver AQOL) using monthly Juniper Caregiver Asthma Quality of Life Questionnaires (AQLQ) for 32 primary caregivers to 42 asthmatic children aged 4 to 17 years. Longitudinal analyses were used to examine caregiver AQOL trends and their relationship to the child’s AQOL, then to consider additional predictors of caregiver AQOL. Caregiver AQLQ improved significantly over the course of the study with overall improvements significantly correlated with child AQOL (p = 0.005). However, caregiver AQOL improved most in the months before environmental interventions, while children’s AQOL improved most in the months following. Time trends in caregiver AQOL, controlling for child AQOL, were not explained by available social support or caregiver stress measures. Our findings suggest potential participation effects not adequately captured by standard measures. Future environmental intervention studies should more formally consider social support and participation effects for both children and caregivers PMID:19184446
Maseda, Ana; González-Abraldes, Isabel; de Labra, Carmen; Marey-López, José; Sánchez, Alba; Millán-Calenti, José C
We examined which variables are associated with day care centres utilization among caregivers of dementia patients. A cross-sectional analysis of socio-demographic variables, relationship with caring and psychological aspects was conducted in 58 informal caregivers with intense burden. 58.6 % used day care assistance and 41.4 % did not. The results showed the importance of the commitment between the caregiver and their family and friends. The use of day care services is independent of the age, gender, educational level, marital status, occupation and relationship with the patient. However, in the multivariate analysis the provision of help by families and friends predicted the use of day care assistance. The bivariate analysis showed a significant relationship between depressive symptoms and self-rated health with day care attendance. Screening the help provision from families and friends in caregivers of dementia patients with intense burden would be relevant to design interventions which delay their institutionalization and reduce costs. PMID:25535044
Nelson, Melissa M.; Smith, Maureen A.; Martinson, Brian C.; Kind, Amy; Luepker, Russell V.
Purpose: Caregivers of stroke patients may adapt to changes in patient functioning over time. If adaptation occurs, then caregiver burden and health may be influenced more by worsening in patient functioning than by static levels of functioning. This study examines the relationship between patients' baseline and changes in functioning and…
Fianco, Andrea; Sartori, Raffaela D G; Negri, Luca; Lorini, Saverio; Valle, Giovanni; Delle Fave, Antonella
In studies on caregiving, high levels of perceived burden are commonly considered as synonymous with poor well-being. This study aimed at better disentangling the relationship between burden and well-being dimensions through their joint investigation. To this purpose, perceived well-being and social resources were evaluated among caregivers reporting different levels of burden. Participants were 91 caregivers (mean age=50.4; SD=9.6), parents of people diagnosed with severe neuromotor and cognitive disorders. Participants completed a semi-structured interview and a set of scaled questionnaires: Caregiver Burden Inventory (CBI), Satisfaction with Life Scale, Positive and Negative Affect Schedule, Depression Anxiety Stress Scale, Eudaimonic and Hedonic Happiness Investigation, Resilience Scale for Adults, and Multidimensional Scale of Perceived Social Support. Participants were divided into two groups according to their perceived burden level, assessed through CBI. In both groups, the subjective components of burden accounted for the major fraction of the total burden level. Participants perceiving high burden reported higher levels of depression related emotions, lower life satisfaction and lower resilience than participants perceiving low burden. No group difference emerged in perceived meaningfulness and social support. A regression analysis showed that the best predictor of perceived burden was life satisfaction, followed to a lesser extent by resilience, while depression related emotions did not provide significant contribution. Findings suggest that the joint assessment of burden and well-being dimensions, that are co-existing in caregivers' experience, allow for the identification of personal and relational resources that can be usefully included in interventions addressed to caregivers. PMID:25666898
da Silva, Luiz Bernardino Lima; Ivo, Maria Lúcia; de Souza, Albert Schiaveto; Pontes, Elenir Rose Jardim Cury; Pinto, Alexandra Maria Almeida Carvalho; de Araujo, Olinda Maria Rodrigues
Objective To assess the burden and quality of life of caregivers of patients with sickle cell anemia taking hydroxyurea versus those of patients not taking hydroxyurea. Methods A cross-sectional study was performed of caregivers of outpatients with sickle cell anemia in two public hospitals in Campo Grande, MS, from January through June 2010. The World Health Organization Quality of Life-BREF Scale and the Caregiver Burden Scale were used. Results Of the 37 caregivers in this study, 81.1% were women, 73.0% were mothers, 59.5% were married, 54.1%were mulattos, 48.6% were housewives, 54.1% had family incomes of up to one minimum wage and 75.7% had onlycompleted elementary education. The mean duration of care provided (time after diagnosis) was 16.08 ± 9.88 yearsand 89.2% reported that they provided 24-hour care. Regarding health, 27.0% of study participants reported having physical and 13.5% emotional problems. There were no significant relationships between these variables either with the different domains or the total score of the WHOQOL-BREF comparing caregivers of patients taking hydroxyurea versusthose of patients not taking hydroxyurea. There was a moderate negative linear correlation between the WHOQOL-BREF and the Caregiver Burden Scale scores (linear correlation test of Pearson: p-value = 0.003, r = -0.477). The burden of caregivers of patients who did not take hydroxyurea was significantly higher than those of patients who took the medication in terms of general tension, disappointment, environment and total score (student t-test: p-value < 0.05). Conclusion In the perception of the caregiver, looking after sickle cell anemia patients represents a moderate negative burden. PMID:23049439
Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi
Background: Living with heart failure patients is a complex situation for family caregivers. Few studies have been conducted to examine the effects of interventional programs to ease this condition. The purpose of this study was to determine the effectiveness of a supportive educative group intervention in reducing family caregivers’ burden of caregiving. Materials and Methods: This randomized clinical trail was conducted at a selective teaching hospital in Isfahan, Iran in 2012. The intervention consisted of four weekly multimedia training sessions of 2 h that included education and family support for 50 family caregivers. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Paired t-test, Student's t-tests, and repeated measures analysis of variance (ANOVA) were used to test for significant differences of the mean scores of burden between the intervention and control groups over a 3-month period. Results: The intervention was successful in reducing caregiver burden over time both at the end of the intervention period (P = 0.000) and 3 months after the intervention (P = 0.000). Conclusions: Nurses and other healthcare providers can use the findings of this study in order to implement effective programs to reduce family caregivers’ challenges and to provide them more support. PMID:24949057
Cadman, Tim; Eklund, Hanna; Howley, Deirdre; Hayward, Hannah; Clarke, Hanna; Findon, James; Xenitidis, Kiriakos; Murphy, Declan; Asherson, Philip; Glaser, Karen
Objective: There is increasing recognition that autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) are associated with significant costs and burdens. However, research on their impact has focused mostly on the caregivers of young children; few studies have examined caregiver burden as children transition into…
Crandall, Erin K.; Ruggero, Camilo J.; Bain, Kathleen; Kilmer, Jared
College campuses often host students who come from families where one or more parent has been affected by a bipolar or depressive disorder. The present study sought to determine whether these students face unique challenges in college, including increased adjustment difficulties as well as greater caregiving burden associated with their…
Mansfield, Elise; Bryant, Jamie; Regan, Timothy; Waller, Amy; Boyes, Allison; Sanson-Fisher, Rob
Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective interventions to support this vulnerable group, it is necessary to understand how this burden varies as a function of patient well-being and across the illness trajectory. This systematic review aimed to identify the number and type of data-based publications exploring the burden and unmet needs of caregivers of individuals with COPD. Medline, Embase, PsycINFO and Cochrane databases were searched for studies published between January 2000 and February 2014. Studies were eligible if they were quantitative studies examining unmet needs of, or burden on, adult caregivers of individuals with COPD. Eligible papers were categorised according to (i) type (i.e. descriptive, measurement and intervention studies); (ii) whether they measured associations between patient and caregiver burden and (iii) whether they measured caregiver burden longitudinally. Twenty-seven data-based papers met criteria for inclusion. There was a significant increase in the total number of publications over time. The majority of publications were descriptive studies (n = 25), with one measurement and one intervention study identified. Fourteen descriptive studies measured the relationship between patient or caregiver factors and caregiver burden. Only two studies measured caregiver burden over time. There are a number of gaps in the body of research examining burden and unmet needs of caregivers of individuals with COPD that preclude the development of effective interventions for this population. Greater research effort should be directed towards identifying rigorous measurement tools which more accurately characterise caregiver burden, so that evidence-based interventions can be developed. PMID:26979431
Koutra, Katerina; Simos, Panagiotis; Triliva, Sofia; Lionis, Christos; Vgontzas, Alexandros N
The present study aimed to evaluate a path analytic model accounting for caregivers' psychological distress that takes into account perceived family cohesion and flexibility, expressed emotion and caregiver's burden associated with the presence of mental illness in the family. 50 first-episode and 50 chronic patients diagnosed with schizophrenia or bipolar disorder (most recent episode manic severe with psychotic features) recruited from the Inpatient Psychiatric Unit of the University Hospital of Heraklion, Crete, Greece, and their family caregivers participated in the study. Family functioning was assessed in terms of cohesion and flexibility (FACES-IV), expressed emotion (FQ), family burden (FBS) and caregivers' psychological distress (GHQ-28). Structural equation modelling was used to evaluate the direct and indirect effects of family dynamics on caregivers' psychological distress. The results showed that neither family cohesion nor family flexibility exerted significant direct effects on caregivers' psychological distress. Instead, the effect of flexibility was mediated by caregivers' criticism and family burden indicating an indirect effect on caregivers' psychological distress. These results apply equally to caregivers of first episode and chronic patients. Family interventions aiming to improve dysfunctional family interactions by promoting awareness of family dynamics could reduce the burden and improve the emotional well-being of family caregivers. PMID:27085666
Losada, A; Robinson Shurgot, G; Knight, B G; Márquez, M; Montorio, I; Izal, M; Ruiz, M A
Familism has been pointed out as a key value in Hispanic culture that may or may not be associated with caregiver distress. Although groups included in the Hispanic identity have many common features, differences between Hispanic sub-groups in the relationship of familism with burden and depressive symptoms remain unexplored. The association of familism with burden and depressive symptomatology was examined in 48 Hispanic dementia caregivers from Los Angeles (CA, USA) and 60 from Madrid (Spain) through path analyses. Burden and depressive symptomatology were positively and significantly related in both samples. Familism was significantly correlated with lesser burden in the USA Hispanic caregiver sample, but with higher levels of depressive symptoms in the Spanish sample. Significant differences between Hispanic samples were found in the relationship between familism, burden, and depression, denoting the importance of specific cultural contexts influencing dementia caregiving in Hispanics. PMID:16338817
Gwyther, Lisa P.; George, Linda K.
This symposium includes three papers that provide new insights into the caregiving experience. Papers focus upon a group of caregivers who appear to be at special risk for negative outcomes, the family caregivers of older persons suffering from Alzheimer's Disease or a related disorder. (Author/ABB)
Durmaz, Hatice; Okanlı, Ayşe
Sixty-two individuals with schizophrenia and their families were part of a descriptive study that investigated the effect of self-efficacy levels on the burden of care, using family member caregivers of schizophrenia patients. Data were collected using a questionnaire on the descriptive characteristics of patients and their families, the Self-Efficacy Scale, and Zarit Caregiver Burden Scale. The results for caregivers indicated a total mean self-efficacy score of 76.4±17.76 and a total mean of burden of care score of 68.64±18.60. A negative significant relation was discovered by looking at the correlation between the total mean scores (r=-.260, p<0.05). These results indicate that the burden of care decreases with the increasing level of self-efficacy in caregiver family members. PMID:25017564
Shahly, V.; Chatterji, S.; Gruber, M. J.; Al-Hamzawi, A.; Alonso, J.; Andrade, L. H.; Angermeyer, M. C.; Bruffaerts, R.; Bunting, B.; Caldas-de-Almeida, J. M.; de Girolamo, G.; de Jonge, P.; Florescu, S.; Gureje, O.; Haro, J. M.; Hinkov, H. R.; Hu, C.; Karam, E. G.; Lépine, J.-P.; Levinson, D.; Medina-Mora, M. E.; Posada-Villa, J.; Sampson, N. A.; Trivedi, J.K.; Viana, M. C.; Kessler, R. C.
Background Current trends in population aging affect both recipients and providers of informal family caregiving, as the pool of family caregivers is shrinking while demand is increasing. Epidemiologic research has not yet examined the implications of these trends for burdens experienced by aging family caregivers. Methods Cross-sectional community surveys in 20 countries asked 13,892 respondents ages 50+ about the objective (time, financial) and subjective (distress, embarrassment) burdens they experience in providing care to first-degree relatives with 12 broadly-defined serious physical and mental conditions. Differential burden was examined by country income category, kinship status, and type of condition. Results Among the 26.9-42.5% respondents in high, upper-middle, and low/lower-middle income countries reporting serious relative health conditions, 35.7-42.5% reported burden. Of those, 25.2-29.0% spent time and 13.5-19.4% money, while 24.4-30.6% felt distress and 6.4-21.7% embarrassment. Mean caregiving hours/week given any was 16.6-23.6 (169.9-205.8 hours/week/100 people ages 50+). Burden in low/lower-middle income countries was 2-3-fold higher than in higher income countries, with financial burden given any averaging 14.3% of median family income in high, 17.7% in upper-middle, and 39.8% in low/lower-middle income countries. Higher burden was reported by women than men and for conditions of spouses and children than parents or siblings. Conclusions Uncompensated family caregiving is an important societal asset that offsets rising formal healthcare costs. However, the substantial burdens experienced by aging caregivers across multiple family health conditions and geographic regions threaten the continued integrity of their caregiving capacity. Initiatives supporting older family caregivers are consequently needed, especially in low/lower-middle income countries. PMID:22877824
Novak, Mark; Guest, Carol
Examined correlates of caregiver burden among 30 caregivers of Alzheimer's disease patients. Results revealed no significant correlation between length of time a caregiver had given care to a particular patient and the caregiver's subjective feelings of caregiver burden. Found significant, moderate correlation between caregiver burden and patient…
Gitlin, Laura N.; Winter, Laraine; Burke, Janice; Chernett, Nancy; Dennis, Marie P.; Hauck, Walter W.
Objective To test whether the Tailored Activity Program for at-home dementia patients reduces neuropsychiatric behaviors and caregiver burden. Method A prospective, two-group controlled pilot study with 60 dyads randomized to treatment or wait-list control. Dyads were interviewed at baseline and 4 months (trial endpoint); control participants then received intervention and were reassessed 4 months later. The 8-session occupational therapy intervention involved neuropsychological and functional testing from which activities were customized and instruction in use provided to caregivers. Results At 4-months, compared to controls, intervention caregivers reported reduced frequency of behaviors (p = .010; Cohen’s d = .72), specifically for shadowing (p = .003, Cohen’s d = 3.10) and repetitive questioning (p = .23, Cohen’s d = 1.22); greater activity engagement (p = .029, Cohen’s d = .61); and ability to keep busy (p = .017, Cohen’s d = .71). Also, fewer intervention caregivers reported agitation (p = .014, Cohen’s d = .75) or argumentation (p = .010, Cohen’s d = .77). Caregiver benefits included fewer hours doing things (p = .005, Cohen’s d = 1.14) and being on duty (p = .001, Cohen’s d = 1.01), greater mastery (p = .013, Cohen’s d = .55), self-efficacy (p = .011, Cohen’s d = .74), and use of simplification techniques (p = .023, Cohen’s d = .71). Wait-list control participants showed similar benefits for behavioral frequency following intervention. Conclusions Results suggest clinically-relevant benefits for both dementia patients and caregivers, with treatment minimizing the occurrence of behaviors that commonly trigger nursing home placement. PMID:18310553
Shadden, Barbara; Powers, Melissa; DiBrezzo, Ro
An increasing number of Americans today are finding themselves in the position of being both a full-time employee and a part- or full-time caregiver for an adult relative. Often, their job responsibilities and their caregiving duties collide, creating undue stress and costing both the employer and the employee hundreds of thousands of dollars in…
Tay, Kay Chai Peter; Seow, Chuen Chai Dennis; Xiao, Chunxiang; Lee, Hui Min Julian; Chiu, Helen Fk; Chan, Sally Wai-Chi
Dementia is a global health issue and the effects on caregivers are substantial. The study aimed to examine the associations of burden, coping, self-efficacy with quality of life among family caregivers of persons with dementia in Singapore. Structured interviews were conducted in a convenience sample of 84 family caregivers caring and seeking clinical care for the persons with dementia in an outpatient clinic of a public hospital in Singapore. The outcome measures included the Family Burden Interview Schedule, Family Crisis Oriented Personal Evaluation Scale, General Perceived Self-Efficacy Scale, and World Health Organization Quality of Life Scale - Brief Version. In general, significant correlations were observed between the quality of life scores with coping strategy and family burden scores, but not between the coping strategy and family burden scores. Compared to demographic factors such as caregiver age and household income, psychosocial factors including family burden, coping strategies, and self-efficacy demonstrated greater association with quality of life in the participants. However, the dynamics of these associations will change with an increasing population of persons with dementia, decreasing nuclear family size, and predicted changes in family living arrangements for the persons with dementia in future. As such, it necessitates continuous study examining the needs and concerns of family caregivers and the relevance of ongoing interventions specific to caregivers of persons with dementia. PMID:24535819
Schubart, Jane R.; Kinzie, Mable B.; Farace, Elana
The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers. PMID:17993635
Martorell, A.; Pereda, A.; Salvador-Carulla, L.; Ochoa, S.; Ayuso-Mateos, J. L.
Background: There is little information on the psychometric properties of instruments for assessing family care burden in adults with intellectual disabilities (ID). The aim of this study is therefore to analyse the usefulness of the 'Subjective and Objective Family Burden Interview' (SOFBI) in the assessment of principal caregivers in Spain.…
Weisman de Mamani, Amy; Suro, Giulia
Objective Caring for a family member with schizophrenia often results in high degrees of self-conscious emotions (shame and guilt/self -blame), burden, and other serious mental health consequences. Research suggests that ethnic and cultural factors strongly influence the manner in which family members respond to mental illness. Research further indicates that certain cultural practices and values (spirituality, collectivism) may assist family members in coping with the self-conscious emotions and burden associated with caregiving. With this in mind, we have developed a family focused, culturally-informed treatment for schizophrenia (CIT-S). Method Using a sample of 113 caregivers of patients with schizophrenia (60% Hispanic, 28.2% Caucasian, 8% African American and 3.8% “Other”), we assessed the ability of CIT-S to reduce self-conscious emotions and caregiver burden above and beyond a three-session psychoeducation (PSY-ED) control condition. We further examined whether self-conscious emotions mediated the relationship between treatment type and caregiver burden. Results In line with expectations, CIT-S was found to outperform PSY-ED in reducing guilt/self-blame and caregiver burden. Furthermore, consistent with hypotheses, reductions in guilt/self-blame were found to mediate the changes observed between treatment type and caregiver burden. While caregivers in both treatment groups demonstrated significant post treatment reductions in shame, CIT-S was not found to outperform PSY-ED in reducing levels of this construct. Conclusions Results suggest that caregivers of patients with schizophrenia may respond well to a treatment that specifically taps in to their cultural beliefs, values, and behaviors in helping them cope with schizophrenia in a loved one. Study implications and future directions are discussed. PMID:26654115
Collins, Lauren G; Swartz, Kristine
In 2009, nearly 66 million Americans (three in 10 U.S. households) reported at least one person providing unpaid care as a family caregiver. More adults with chronic conditions and disabilities are living at home than ever before, and family caregivers have an even higher level of responsibility. Caring for loved ones is associated with several benefits, including personal fulfillment. However, caregiving is also associated with physical, psychological, and financial burdens. Primary care physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of caregiver or care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life. Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life. PMID:21661713
Pahlavanzade, Saeed; Khosravi, Narjes; Moeini, Mahin
Background: The family of cancer patients experience burden of care because of their caring role. Therefore, appropriate and effective interventions are essential in order to decrease burden. The goal of the present research was to determine the effect of a family need–based program on the burden of care in caregivers of leukemia patients. Materials and Methods: In this clinical research, 70 caregivers of leukemia patients who referred to Sayed Al-Shohada Medical Center in Isfahan, Iran were chosen and divided, through convenient sampling method and using table of random numbers, into two groups, experimental and control. Caregivers of the experimental group attended five training sessions. The data collection tool of this study was the Zarit Burden Scale. It was completed by members of both groups before, immediately after, and 1 month after the intervention. The data obtained were analyzed with SPSS software. Results: During the study period, burden slowly decreased in the experimental group and increased in the control group. Mean burden of care score before, immediately after, and 1 month after the intervention was 63.6, 30.4, and 23.03, respectively, in the experimental group and 62.5, 67.3, and 68.8, respectively, in the control group. In addition, the mean burden score in the experimental group significantly decreased in comparison with the control group (P < 0.001). Conclusion: This family need–based program can decrease burden in caregivers of leukemia patients and may potentially improve the quality of life of both patients and caregivers. PMID:25558261
Leggett, Amanda N.; Zarit, Steven; Taylor, Angela; Galvin, James E.
Purpose: Patients with Lewy body dementia (LBD) may present a unique set of symptoms and challenges to family caregivers compared with other types of dementia. Prominent difficulties include motor impairment, activities of daily living (ADLs) disability, recurrent behavioral and emotional problems (BEPs), and diagnostic difficulties. These…
Carona, C.; Crespo, C.; Canavarro, M. C.
This study had two main objectives: first, to examine the direct and indirect effects, via social support, of caregiving burden on the adaptation outcomes of children/adolescents with cerebral palsy and their parents; and second, to assess the invariance of such models in clinical vs. healthy subsamples. Participants were 210 dyads of…
Cheng, Sheung-Tak; Lam, Linda C. W.; Kwok, Timothy; Ng, Natalie S. S.; Fung, Ada W. T.
Purpose: To test the effects of different self-efficacy beliefs on caregiver appraisals and depressive symptoms. We hypothesized that self-efficacy has a direct effect on depression while moderating the effects of behavioral problems on both negative (i.e., burden) and positive (i.e., uplifting) appraisals. Design and Methods: Ninety-nine Chinese…
Kelley, Marjorie; Demiris, George; Nguyen, Huong; Oliver, Debra P; Wittenberg-Lyles, Elaine
Background Informal, unpaid, family caregivers provide much hospice care in the United States. These caregivers suffer physically, psychologically, emotionally, and socially from the burden of caring. The most often identified area of caregiver burden is the management of end-of-life pain. However, little empirical evidence exists of effective interventions to help caregivers manage end-of-life pain, and issues surrounding caregiver pain management remain vague and undefined. Understanding these concerns will inform the design of effective caregiver interventions. Aim The purpose of this study was to describe and organize caregiver pain management challenges faced by home hospice caregivers of cancer patients. Design A content analysis of secondary data, namely, recordings of caregiver interviews, was conducted to describe pain management issues. These interviews were part of a larger clinical trial. Setting/participants Multiple sessions with 29 informal caregivers, of patients dying of cancer, were audio-recorded. Subjects were purposively selected from two hospice programs in the Northwestern United States. Caregivers of noncancer patients were excluded from the study sample. Results A framework of six major themes with subordinate subthemes was developed through a literature review and peer review. The framework was used to organize the content of 87 caregiver interviews. The six major themes identified in the analysis included Caregiver-Centric Issues, Caregiver Medication Skills and Knowledge Issues, End-of-Life Symptom Knowledge Issues, Communication and Teamwork Issues, Organizational Skill Issues, and Patient-Centric Issues. Conclusion This analysis clearly articulated and classified caregiver issues surrounding pain management. Future hospice research may benefit from the use of this analysis and framework in the development of tools to alleviate this major cause of caregiver burden. PMID:23612959
Thorngren, Daniel; Lindau, Stacy Tessler
Objectives. We estimated the prevalence of caregiver hospital food insecurity (defined as not getting enough to eat during a child’s hospitalization), examined associations between food insecurity and barriers to food access, and propose a conceptual framework to inform remedies to this problem. Methods. We conducted a cross-sectional study of 200 caregivers of hospitalized children in Chicago, Illinois (June through December 2011). A self-administered questionnaire assessed sociodemographic characteristics, barriers to food, and caregiver hospital food insecurity. Results. Caregiver hospital food insecurity was prevalent (32%). Caregivers who were aged 18 to 34 years, Black or African American, unpartnered, and with less education were more likely to experience hospital food insecurity. Not having enough money to buy food at the hospital, lack of reliable transportation, and lack of knowledge of where to get food at the hospital were associated with hospital food insecurity. The proposed conceptual framework posits a bidirectional relationship between food insecurity and health, emphasizing the interdependencies between caregiver food insecurity and patient outcomes. Conclusions. Strategies are needed to identify and feed caregivers and to eradicate food insecurity in homes of children with serious illness. PMID:26066937
Perrin, Paul B.; Panyavin, Ivan; Morlett Paredes, Alejandra; Aguayo, Adriana; Macias, Miguel Angel; Rabago, Brenda; Picot, Sandra J. Fulton; Arango-Lasprilla, Juan Carlos
Background. Multiple sclerosis (MS) rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory), health-related quality of life (HRQOL; Short Form-36), and social support (Interpersonal Support Evaluation List-12) in 81 (66.7% women) Mexican MS caregivers. Results. As compared to men caregivers, women had lower mental health (p = 0.006), HRQOL (p < 0.001), and social support (p < 0.001). This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, p = 0.018) and for nearly three times as many months (66.31 versus 24.30, p = 0.002). Conclusions. Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America—particularly for women caregivers—should address the influence of gender-role conformity on care and psychosocial functioning. PMID:26538818
Pahlavanzadeh, Saeid; Dalvi-Isfahani, Fariba; Alimohammadi, Nasrollah; Chitsaz, Ahmad
Background: Lack of adequate training and support of primary caregivers of multiple sclerosis (MS) patients is the major factor in causing stress, anxiety, and increase of burden. Therefore, the treatment team members such as psychiatric nurses can help these vulnerable people overcome psychiatric pressures effectively not only through their care and referral role but also through their supportive characteristic, which helps the patients improve their clinical status, together with their social, familial, and work adaptation. Therefore, the researcher tried to identify the effect of a group psycho-education program on the burden family caregivers with MS patients. Materials and Methods: This is a two-group three-stage clinical trial. The researcher referred to the heads of neurology clinics to present the purpose of the study and to start the sampling. The neurology clinics of AL Zahra University Hospital, and also a Private Neurology Clinic were selected to collect the data of the study. The subjects were randomly selected, and then, assigned to two groups of study and control. Results: Independent t-test showed a significant reduction in family caregivers’ burden immediately after and 1-month after intervention in the study group, compared to control. Repeated measure ANOVA showed a significant reduction in caregivers’ burden mean score in the study group (P < 0.001). Conclusions: As group psycho-education reduced family caregivers’ burden, it is recommended to develop and design other programs for the family caregivers of the patients with MS. PMID:26257794
Many family caregivers of older adults suffer from a high burden of care and struggle with the balance of jobs and caregiving tasks. However, the United States is the only developed country without paid sick leave policies for all workers and their families. The purpose of this article is to review the federal Family and Medical Leave Act (FMLA) and empirical studies about paid sick policy, propose policy recommendations, and provide a starting point for future research. The result has shown that the FMLA only applies to certain employees and the provided leave is unpaid under the act. Working women, Latinos, low-wage workers, and less-educated employees are less likely to access paid sick leave and family leave. Obviously, social injustice exists in the FMLA and paid sick leave policies. This article proposes that the Family and Medical Leave Act coverage should be expanded to protect all workers, especially for primary family caregivers of older adults, regardless of family relationships. Also, paid sick and family leave laws should be passed, and requirements to contribute to a family-friendly workplace added to relieve the growing burden of family caregiving of older adults. Policy recommendations including the exemplar of the San Francisco Paid Sick Leave Ordinance, and suggestions for more comprehensive policies are proposed for federal, state, or/and city legislation. PMID:25335873
Rajabi-Mashhadi, Mohammad T; Mashhadinejad, Hosein; Ebrahimzadeh, Mohammad H; Golhasani-Keshtan, Farideh; Ebrahimi, Hanieh; Zarei, Zahra
Background: To test the psychometric properties of the Persian version of Zarit Burden Interview (ZBI-12) in the Iranian population. Methods: After translating and cultural adaptation of the questionnaire into Persian, 100 caregiver spouses of Iran- Iraq war (1980-88) veterans with chronic spinal cord injury who live in the city of Mashhad, Iran, invited to participate in the study. The Persian version of ZBI-12 accompanied with the Persian SF-36 was completed by the caregivers to test validity of the Persian ZBI-12.A Pearson`s correlation coefficient was calculated for validity testing. In order to assess reliability of the Persian ZBI-12, we administered the ZBI-12 randomly in 48 caregiver spouses again 3 days later. Results: Generally, the internal consistency of the questionnaire was found to be strong (Cronbach's alpha 0.77). Intercorrelation matrix between the different domains of ZBI-12 at test-retest was 0.78. The results revealed that majority of questions the Persian ZBI_12 have a significant correlation to each other. In terms of validity, our results showed that there is significant correlations between some domains of the Persian version the Short Form Health Survey -36 with the Persian Zarit Burden Interview such as Q1 with Role Physical (P=0.03),General Health (P=0.034),Social Functional (0.037), Mental Health (0.023) and Q3 with Physical Function (P=0.001),Viltality (0.002), Socil Function (0.001). Conclusions: Our findings suggest that the Zarit Burden Interview Persian version is both a valid and reliable instrument for measuring the burden of caregivers of individuals with chronic spinal cord injury. PMID:25692171
Gitlin, Laura N; Piersol, Catherine Verrier; Hodgson, Nancy; Marx, Katherine; Roth, David L; Johnston, Deidre; Samus, Quincy; Pizzi, Laura; Jutkowitz, Eric; Lyketsos, Constantine G
Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS. PMID:27339865
Al-Farsi, Yahya M.; Waly, Mostafa I.; Al-Sharbati, Marwan M.; Al-Shafaee, Mohamed; Al-Farsi, Omar; Al-Fahdi, Samiya; Ouhtit, Allal; Al-Khaduri, Maha; Al-Adawi, Samir
A cross-sectional study was conducted to investigate whether caregiver's variations in socioeconomic status (SES) has direct bearing on challenges of nurturing children with autism spectrum disorder (ASD) in Oman. A cadre of caregivers (n = 150) from two types of SES (low-income and middle-high income) were compared based on four domains: (1)…
Mahoney, Diane Feeney; Tarlow, Barbara J.; Jones, Richard N.
Purpose: We determine the main outcome effects of a 12-month computer-mediated automated interactive voice response (IVR) intervention designed to assist family caregivers managing persons with disruptive behaviors related to Alzheimer's disease (AD). Design and Methods: We conducted a randomized controlled study of 100 caregivers, 51 in the usual…
Wu, Fuchen; Chen, Xuefeng; Wang, Wenting; Yang, Xue
Background Paying attention to and improving the mental health of the informal caregivers of disabled elders has become a global public health priority. This study focused on low-income female Uyghur and Kazakh informal caregivers of disabled elders residing in China’s far west. It investigated the prevalence of and the major related factors of depressive emotion. Methods A cross-sectional study was performed from September 2013 to January 2014 in Shawan Prefectures, Tuokexun Prefectures, Bole Prefecture and Urumchi city. Shawan Prefecture has the highest proportion of Kazakhs, whereas Tuokexun Prefectures, Bole Prefecture and Urumchi city have the highest proportion of Uyghurs in Muslim ethnic Uygur and Kazakh communities. Xinjiang Uyghur Autonomous Region is located in remote western China; this area is approximately 3,105 km (1,929 miles) away from Beijing. A total of 444 female Uyghur and Kazakh informal caregivers of disabled elders participated in this study. The self-rating depression scale, the Zarit burden interview, and the SF-36 questionnaire were used to evaluate the state of caregiver depression, caregiver burden, and quality of life (QOL), respectively. Statistical analyses were performed using multivariate logistic regression analyses, correlation with Spearman’s rho and independent-sample t-tests; a P-value of <0.05 was considered statistically significant. Results Up to 38.5% (n = 217) of informal caregivers reported having depression, whereas 61.5% (n = 273) of them reported a lack of depression. Age of disabled elders more than 60 years old, total hours spent on caring daily≥8h, duration of caring≥5 years, negative self-evaluation of health condition, having caregiver burden, elders’ medium degree of disability and elders’ heavy degree of disability had a higher risk of caregiver depression. By contrast, daughter/daughter-in-law of disabled elders; unemployed carers, family’s per capita income >US$235.48(1500 yuan), high social
Eustache, Eddy; Oswald, Catherine; Surkan, Pamela; Louis, Ermaze; Scanlan, Fiona; Wong, Richard; Li, Michelle; Mukherjee, Joia
Abstract The study is an analysis of baseline data from a pilot psychosocial support intervention for HIV-affected youth and their caregivers in Haiti. Six sites in Haiti's Central Department affiliated with Partners In Health/Zanmi Lasante (PIH/ZL) and the Haitian Ministry of Health were included. Participants were recruited from a list of HIV-positive patients receiving care at PIH/ZL. The baseline questionnaire was administered from February 2006 to January 2007 with HIV-affected youth (n = 492), ages 10–17, and their caregivers (n = 330). According to findings at baseline, the youth reported high levels of anxiety, including constant fidgeting (86%), restlessness (83%), and worrying a lot (56%). Their parents/caregivers also reported a high level of depressive symptoms, such as low energy (73%), feeling everything is an effort (71%), and sadness (69%). Parents' depressive symptoms were positively associated with their children's psychological symptoms (odds ratio [OR] =1.6–2.4) and psychosocial functioning (OR =1.6 according to parental report). The significant levels of anxiety and depression observed among HIV-affected youth and their caregivers suggest that psychosocial interventions are needed among HIV-affected families in central Haiti and other high HIV burden areas. The results suggest that a family-focused approach to service provision may be beneficial, possibly improving quality of life, as well as psychosocial and physical health-related outcomes among HIV-affected youth and their caregivers, particularly HIV-positive parents. PMID:20214482
Rose, Julia Hannum; Bowman, Karen F.; O'Toole, Elizabeth E.; Abbott, Katherine; Love, Thomas E.; Thomas, Charles; Dawson, Neal V.
Purpose: There is a growing consensus that quality of care for frail elders should include family and be evaluated in terms of patient-centered, family-focused care (PCFFC). Family caregivers are in a unique and sometimes sole position to evaluate such care. In the context of caring for physically frail elders, this study examined the extent to…
Chappell, Neena L.; Dujela, Carren
Despite the focus on burden of caregiving in gerontological research, studies have shown that few caregivers are overly burdened. This article compares predictors of role-specific burden and two quality-of-life measures among caregivers experiencing heavy care demands to assess role-impact on each. The study included 92 community-based caregivers…
Investigating the effect of family-focused nursing intervention on caregiver burden of the family members of the patients undergoing coronary bypass surgery in Isfahan Shahid Chamran Hospital during 2012
Moieni, Mahin; Poorpooneh, Zahra; Pahlavanzadeh, Saeed
Background: Family burden is defined as the problems, concerns, and unpleasant events affecting the patients undergoing coronary arteries’ surgery, and is associated with these patients physical and psychological improvement. Nurses are in a good position to provide appropriate intervention. This study aimed to investigate the effect of family-focused nursing interventions on the burden of the family members of the patients undergoing coronary bypass surgery. Materials and Methods: This is a clinical trial conducted on 50 family members of the patients undergoing coronary bypass surgery in Isfahan Shahid Chamran hospital. Caregivers were selected by convenient sampling and were randomly assigned to two groups of study and control. Caregivers in the study group attended a three-interventional session program during their hospitalization time, while the subjects in control group did not. Data collection tool was Novak and Guest caring burden inventory (CBI). Data were analyzed by SPSS. Results: Means and SDs of caring burden before and after the intervention were 30.08 (14.03) and 19.2 (10) in the study group, respectively, and 30.16 (12.62) and 35.44 (10.42) in the control group, respectively. Changes of total scores of caring burden showed a significant difference after the intervention in the study and control groups (P < 0.001). Score changes of subscales of time dependence (P < 0.001), developmental (P < 0.001), physical (P < 0.001), and emotional caring burden (P = 0.007) were also significant. Conclusions: Results showed that family-focused nursing interventions were effective in reducing the family burden of the patients undergoing coronary bypass surgery. Nurses can administrate family-focused nursing interventions to reduce the caregiver burden. PMID:24834089
Talkington-Boyer, Shannon; Snyder, Douglas K.
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…
Depression and socio-economical burden are more common in primary caregivers of patients who are not aware of their cancer: TURQUOISE Study by the Palliative Care Working Committee of the Turkish Oncology Group (TOG).
Tanriverdi, O; Yavuzsen, T; Turhal, S; Kilic, D; Yalcin, S; Ozkan, A; Uzunoglu, S; Uysal-Sonmez, O; Akman, T; Aktas, B; Ulger, S; Babacan, T; Komurcu, S; Yaren, A; Cay-Senler, F
In this study, we aimed to determine the personal, social and economic burden and the frequency of depression, as well as in caregivers of cancer patients who are being treated with chemotherapy in Turkey. The study is designed as a cross-sectional survey study using a 5-point Likert-type response scale, and the last part of the questionnaire includes the Beck Depression Inventory. The depression rate was found to be 64% (n = 476) among all subjects (n = 968), with 91% of those with depression demonstrating signs of mild depression. In this study, a significant difference was found between the presence of depression and age (young), sex (female), educational level (high), economic status (low), financial loss during treatment, patient's lack of knowledge about his/her diagnosis, metastatic disease and short survival time. In addition, 64% of all subjects had concerns of getting cancer, and 44% of all subjects had feelings of anger/rage against other people. In a multivariate regression analysis, the patient's lack of knowledge of the diagnosis was the independent risk factor. In conclusion, depression incidence and burden rate increased among cancer caregivers, and care burden was highly associated with depression. Accordingly, approaches to reducing the psycho-social effects of cancer should focus intensively on both the patients and their caregivers in Turkey. PMID:25828949
Dujela, Carren; Smith, André
We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem. PMID:25651586
Luchsinger, José Alejandro; Tipiani, Dante; Torres-Patiño, Gabriela; Silver, Stephanie; Eimicke, Joseph P.; Ramirez, Mildred; Teresi, Jeanne; Mittelman, Mary
Background 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. Methods We recruited 139 Hispanic family caregivers. We collected data on socio-demographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. Results The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than $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. Conclusions Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers. PMID:25635108
Gold, Dolores Pushkar; And Others
Interviewed a sample of 118 caregivers maintaining relatives with dementia at home, who completed questionnaires at initial and follow-up assessment 6 months later. All dependents received a cognitive assessment. Results of data analysis supported a model of caregiving in which negative outcomes of burden and impaired health reduced positive…
Chappell, Neena L.; Dujela, Carren
Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies…
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Bailey, Eric J.; Young, Rosalie F.
The topic of caregiving was investigated with respect to the burden experienced by primary caregivers of older persons who had recently suffered a myocardial infarction. Structured interviews were completed with 104 primary care providers who were part of a larger National Institute on Aging funded survey. The caregivers were of both sexes and…
Morse, Jennifer Q.; Shaffer, David R.; Williamson, Gail M.; Dooley, W. Keith; Schulz, Richard
The burden of providing informal care to a family member can lead to caregiver depression and potentially harmful caregiving behavior. Given the interpersonal nature of caregiving, the relationship between caregivers and care recipients may impact caregiver responses. We applied attachment theory to understanding caregiver depression, and both potentially harmful and exemplary caregiving responses. We present data from 430 caregivers in the Family Relationships in Late Life (FRILL 2) Project, a multi-site, longitudinal study of caregiving. Age, gender, and model of self were related to caregiving responses, suggesting that model of self may help identify caregivers at risk for poor responses. PMID:21604890
Aronson, Susan S.
Discusses job-related health problems, such as infectious diseases and job stress, that are of concern to child caregivers in child care settings. Ways that these problems can be alleviated and/or medically treated are also discussed. (BB)
Dang, Stuti; Badiye, Amit; Kelkar, Geetanjali
Caring for loved ones with dementia is challenging and stressful for family members who have to provide the home care. The responsibility takes a huge physical, emotional, and financial toll on the caregivers, which is known as caregiver burden. The survival and quality of life of the dementia patient have been shown to be related to the well-being of the caregiver. An overwhelmed caregiver can result in premature institutionalization and increased health-care utilization, by both the patients and the caregivers. The physician should periodically assess caregivers for the level of perceived burden, presence of depression and anxiety, social support, behavioral problems in the care recipient, and coping strategies and help the patient and caregiver with advance care planning. Strategies that meld support, education, and practical counseling about common caregiving stresses and community resources seem to mitigate caregiver burden and depression. PMID:19005434
... more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental ... caregiving families. In every state and DC the poverty rate is higher among families with members with ...
... 2005). Psychophysiological mediators of caregiver stress and differential cognitive decline . Psychology and Aging, 20 (3), 402–411. Pew Research ... 2005). Psychophysiological mediators of caregiver stress and differential cognitive decline . Psychology and Aging, 20 (3), 402–411. Return to ...
Evans, Bronwynne C.; Crogan, Neva; FNGNA; Belyea, Michael; Coon, David
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
Winefield, H R; Harvey, E J
The goals of the study were to describe (1) the tasks undertaken by people who care for a relative with chronic schizophrenia, according to their level of contact with the patient; and (2) any needs for further help that these caregivers might experience. Interviews and standardized questionnaires were used to collect information from 121 family caregivers whose relatives had been diagnosed an average of 14 years previously. Burden in the sense of interference in caregivers' daily lives was most marked for caregivers in high contact with the patients. Patients whom the caregivers regarded as enjoyable to live with had greater self-care and communication skills. Caregivers preferred that patients low in these skills or high in disruptive behavior live in supervised settings. Caregivers expressed particular support for earlier professional intervention in episodes of illness, information about how to lobby politicians for resources, and information about schizophrenia. These results can be used to plan interventions to reduce caregiver stress. PMID:7973471
Brodaty, Henry; Donkin, Marika
Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated. PMID:19585957
There are no currently Food and Drug Administration-approved or proven off-label treatments for the frontotemporal dementias (FTD). Clinicians, care-givers, and patients struggle regularly to find therapeutic regimens that can alleviate the problematic behavioral and cognitive symptoms associated with these devastating conditions. Success is “hit or miss” and the lessons learned are largely anecdotal to date. Drug discovery in this area has been largely hampered by the heterogeneous clinical presentations and pathological phenotypes of disease that represent significant obstacles to progress in this area. Biologically, plausible treatment strategies include the use of antidepressants (selective serotonin reuptake inhibitors or serotonin-specific reuptake inhibitor and monoamine oxidase inhibitors), acetylcholinesterase inhibitors, N-methyl-D-aspartic acid antagonists, mood stabilizers, antipsychotics, stimulants, antihypertensives, and agents that may ameliorate the symptoms of parkinsonism, pseudobulbar affect, and motor neuron disease that can often coexist with FTD. These medications all carry potential risks as well as possible benefits for the person suffering from FTD, and a clear understanding of these factors is critical in selecting an appropriate therapeutic regimen to maximize cognition and daily functions, reduce behavioral symptoms, and alleviate caregiver burden in an individual patient. The role of the caregiver in tracking and reporting of symptoms and the effects of individual therapeutic interventions is pivotal in this process. This manuscript highlights the importance of establishing an effective therapeutic partnership between the physician and caregiver in the medical management of the person suffering from FTD. PMID:21647712
Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth
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
Examines the impact of family support and relationship difficulties between the caregiver and the care recipient on caregivers' satisfaction and subjective burden. Findings showed that relationship difficulties were associated with both satisfaction received from caregiving activities and subjective burden. Family support was not associated with…
Gonyea, Judith G.; O'Connor, Maureen K.; Boyle, Patricia A.
Purpose: The neuropsychiatric symptoms associated with Alzheimer's disease are a major contributor to caregiver distress and burden. Despite recent efforts to teach caregivers skills to manage neuropsychiatric symptoms and reduce burden, there continues to be limited evidence that these strategies have helped caregivers of individuals with…
Kent, Erin E; Rowland, Julia H; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O'Mara, Ann; Huss, Karen
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. PMID:26991807
Gaugler, Joseph E; Kane, Robert L; Newcomer, Robert
Longitudinal studies have documented how dementia caregivers adapt to their role. Less is known about how resilience (defined as lower or higher perceived burden in the face of frequent care demands) affects key dementia caregiving outcomes. The present study utilized data from 1,979 dementia caregivers over a 3-year period to ascertain whether resilience influences transitions from dementia caregiving, such as institutionalization, care recipient death, or loss to follow-up. Multinomial logistic regression models revealed that high baseline resilience (low burden, high care demands) was associated with less frequent institutionalization and loss to follow-up as well as more frequent care recipient mortality. The findings suggest the need for researchers to capture the heterogeneity of caregiver resilience when examining the longitudinal implications of informal long-term care and delivering clinical interventions. PMID:17284556
Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Tworek, Cindy; Patrick, Julie H.; Becker-Cottrill, Barbara
The purpose of this study was to test the psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. The CGSQ was originally developed to assess burden experienced by parents of children and adolescents with serious emotional and behavioral disorders. Study data was collected from 304 primary…
... can also create unique challenges to caregivers. The health care costs alone can take an enormous toll. One recent ... of online caregiving resources. References: The Burden of Health Care Costs for Patients with Dementia in the Last 5 ...
Stalder, Tobias; Tietze, Antje; Steudte, Susann; Alexander, Nina; Dettenborn, Lucia; Kirschbaum, Clemens
Hair cortisol concentrations (HCC) are assumed to reflect integrated long-term cortisol levels and have been proposed as a promising endocrine marker of chronic psychological stress. The current study examined HCC in relation to caregiving burden, a well-established naturalistic model of chronic stress in humans. HCC and relevant psychosocial data were examined in 20 caregivers of relatives with dementia and 20 non-caregiver controls matched for age and sex. Results revealed elevated HCC in dementia caregivers compared to non-caregiver controls (F(1,38)=4.4, p=.04, ηp2=.10). Further, within caregivers, a trend for a positive association of HCC with self-reported caregiving burden (r=.43, p=.058) and a positive association with depressiveness (r=.48, p=.045) were observed. No other associations between HCC and subjective measures were seen. These findings concur with the notion that HCC sensitively capture endocrine aberrations in stress-exposed groups. PMID:25001953
... heart Lifestyle + Risk Reduction Caregiving What Is Caregiver Burnout? Caregiver burnout is caused by too much long-term stress. ... themselves. They begin to show signs of caregiver burnout. Your healthy body, mind and spirit benefit your ...
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Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti
Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's…
Rose, Jonathon M.; And Others
This study explored personality characteristics of female help-seeking caregivers. Female caregivers (N=45) of elderly demented relatives were actively recruited through mass media and special interest groups to participate in a psychoeducational class to alleviate the frustrations of caregiving and increase life satisfaction. The Weinberger…
Caqueo-Urízar, Alejandra; Urzúa, Alfonso; Jamett, Patricio Rojas; Irarrazaval, Matias
This study examined the burden on family members of patients with schizophrenia in a Chilean community. Sixty-five caregivers underwent the Subjective and Objective Family Burden Interview. The results showed moderate to high levels of subjective burden and low levels of support from others in providing care. Burden and containment of disturbed behaviour were correlated with worse relationships between patients and caregivers, with the latter spending less time working outside the home. The assessed sample showed a similar pattern of burden to that of caregivers from developed countries; however, the extent of the burden tended to be higher in Chilean caregivers. PMID:26809366
Loi, Samantha M; Dow, Briony; Ames, David; Moore, Kirsten; Hill, Keith; Russell, Melissa; Lautenschlager, Nicola
Previous research demonstrates that physical activity has psychological benefits for people of all ages. However, it is unclear whether people caring for a frail or ill relative would derive similar psychological benefits, considering the potentially stressful caregiver role. This article reviews the current literature describing the effect of physical activity interventions on the psychological status of caregivers. A search from January 1975 to December 2012 identified five intervention studies investigating physical activity and psychological status in caregivers. These focused on female Caucasian caregivers who were older than 60 years. The physical activity interventions improved stress, depression and burden in caregivers, but small sample sizes, short-term follow up and varying results limited the generalizability of the findings. There were few trials investigating male caregivers, and most care-recipients were people with dementia. Studies with caregivers of different ages and gender, with a range of physical activity interventions, are needed to clarify whether physical activity has psychological benefits for caregivers. PMID:24798641
Holtzman, Susan; Abbey, Susan E; Singer, Lianne G; Ross, Heather J; Stewart, Donna E
This study investigated the impact of patient and caregiver gender on caregiver depressive symptoms. Caregivers' use of relationship-focused coping and dimensions of caregiver burden were examined as potential mediators of gender differences in depressive symptoms. Ninety-three organ transplant candidates and their caregivers completed written questionnaires (N = 186). Females providing care to male patients reported significantly higher depressive symptoms than the other caregivers in our sample. Multiple mediation analyses revealed that less support from family members and a greater negative health impact of caregiving helped explain these gender differences. Women caring for men were also perceived as more overprotective, but this did not explain gender differences in depression. Results highlight the benefits of a contextual, dyadic approach to studying caregiver distress. PMID:21421644
Kate, N; Grover, S; Kulhara, P; Nehra, R
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
Picot, S J; Youngblut, J; Zeller, R
Assessment of the rewards of caregiving is pertinent to a holistic view of the caregiving experience and design of health promotion interventions for caregivers. Few measures of caregiver positive appraisals exist. This paper describes the development and pilot testing of the Picot Caregiver Rewards Scale (PCRS) for adult caregivers. Derived from the choice and social exchange theory, caregiver interviews, and literature, 25 items compose the scale. Psychometric testings of the PCRS were conducted in a nonrandom sample of 83 Black female caregivers and a random sample of 256 Black and White female and male caregivers. Alphas of .83 and .88 demonstrated acceptable internal consistency of the revised 16-item PCRS. Construct validity was demonstrated by support of hypothesized relationships with caregiving demands, palliative coping, depression, and caregiver burden, as well as confirmatory factor analysis. Further psychometric study of the PCRS is recommended. PMID:9505468
... National Alzheimer's Project Act (NAPA) About ADEAR About Alzheimer's Disease: Caregiving On this page: Caregiving Tip Sheets and ... Care Caregiving News Caring for a person with Alzheimer’s disease can have high physical, emotional, and financial costs. ...
Weinland, Jo Ann
Informal caregivers play a major role in providing care to loved ones within the home and demands for dependent care are likely to increase. Informal caregivers are likely to continue to be responsible for the majority of care for loved ones living well into late stages of life. This article describes the lived experience of African American men providing care to a relative within the home and explores their definition of caregiver distress. The phenomenological study was conducted using face-to-face interviews with 10 Christian African American men. Demographic data about the caregiver and the care recipient were collected. Common themes included: commitment, support (family support and formal health-related support), spirituality, and caregiver burden (stress, time strain and financial strain). Implications include the need for health care providers to expand their knowledge related to the diversity of caregivers and to use culturally relevant comprehensive assessments of caregivers and recipients, discharge planning tools, and community resources. PMID:19477717
Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali
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. PMID:25602761
Monin, Joan K; Schulz, Richard
Examining the interpersonal effects of suffering in the context of family caregiving is an important step to a broader understanding of how exposure to suffering affects humans. In this review article, the authors first describe existing evidence that being exposed to the suffering of a care recipient (conceptualized as psychological distress, physical symptoms, and existential/spiritual distress) directly influences caregivers' emotional experiences. Drawing from past theory and research, the authors propose that caregivers experience similar, complementary, and/or defensive emotions in response to care recipient suffering through mechanisms such as cognitive empathy, mimicry, and conditioned learning, placing caregivers at risk for psychological and physical morbidity. The authors then describe how gender, relationship closeness, caregiving efficacy, and individual differences in emotion regulation moderate these processes. Finally, the authors provide directions for future research to deepen understanding of interpersonal phenomena among older adults, and they discuss implications for clinical interventions to alleviate the suffering of both caregivers and care recipients. PMID:19739924
Talwar, Prashant; Matheiken, Shevonne Tresa
Background: Schizophrenia not only influences the lives of those affected but also those around them, especially the caregivers. This study examines the different determinants that are likely to contribute to the caregivers’ perception of burden of care across different countries namely Malaysia and India, using the burden assessment schedule. Aim: The goals for this study were, to study the psychosocial and demographic aspects of patients suffering from schizophrenia, to study the levels of perceived burden of the Malaysian and Indian families caring for a relative with schizophrenia, and to study the determinants that contributes to the caregivers’ perception of burden of care. Materials and Methods: The study was conducted in private hospitals, both in Malaysia as well as Mangalore after obtaining the necessary approval. 50 schizophrenia patients and their caregivers in Malaysia and India were chosen using the purposive sampling technique. The inclusion criteria were a minimum of 5 years since diagnosis of schizophrenia. Results: Although the Indian caregivers perceived difficulties in several areas such as finance, family relationship, well-being and health, they still perceived burden to be lesser compared to Malaysian counterpart. Conclusion: Intensified community based care can reduce burden. PMID:21799556
Daly, Barbara J.; Douglas, Sara L.; Lipson, Amy R.
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. PMID:21953274
Heflinger, Craig Anne; Brannan, Ana Maria
This study examined caregiver strain (i.e., burden of care, caregiver burden) among families of adolescents in treatment for substance abuse disorders compared to youth with mental health problems. We used descriptive and regression analyses to compare groups and to examine the youth and family variables associated with caregiver strain across the…
Lee, Minhong; Yoon, Eunkyung; Kropf, Nancy P.
This study examined the determinants of caregiving burden among South Koreans who care for their disabled older family members. A sample of 1,000 primary caregivers taken from the Comprehensive Study for Elderly Welfare Policy in Seoul, South Korea was analyzed. Independent variables included the demographic characteristics of caregivers and care…
Crispi, Esther Loring; And Others
Studied 108 adults to investigate the impact of adult attachment to parents, perceived disease severity, and caregiving behaviors, moderated by perceived caregiving adequacy. Results indicate that attachment style and the trait aspect of attachment predicted both aspects of caregiver burden. Attachment preoccupation predicted psychologic…
Grebeldinger, Teresa A; Buckley, Kathleen M
In 2015, there were 43.5 million informal, unpaid caregivers in the United States. Caregivers reported a moderate to high level of burden of care, including performing medical and nursing tasks they were not trained to do. A study of family caregiver experiences with parish/faith community nurses reveals four key ways parish nurses support caregivers and offers important implications for parish nurse preparation and practice. PMID:26817372
Abstract Background Descriptive studies of cancer family caregivers demonstrate role-related psychosocial and physical burden; however, little is known about which factors contribute to or obviate burden. Systematic reviews of caregiver intervention studies demonstrate mixed results, perhaps because some caregiver needs are still unknown and not adequately addressed. The purpose of our study was to explore the lived experience of being a caregiver for an adult with lung or colon cancer, so as to guide the development of future intervention studies. Method Using phenomenologic methods, open-ended interviews were conducted at a chemotherapy clinic, New Haven, CT with 135 caregivers to adults with lung or colon cancer. Interviews were audio-recorded and transcribed. Thematic analysis was conducted with transcripts coded, reviewed, and recoded multiple times. The final 69 codes were reduced to 13 code clusters (thematic categories) distributed among 4 themes. Results Four inter-related themes emerged: 1) becoming a caregiver; 2) new and altered relationships; 3) personal responses to caregiving and 4) antecedents and social context. Caregivers describe hearing the cancer diagnosis as “life-changing”. The cancer creates the context for the caregiver's relationships (with the patient, self, others, and the healthcare system), and cognitive, behavioral, affective, and spiritual responses. The caregiver's antecedent experiences and social support network form the foundation for their perceptions of the diagnosis, relationships, and personal responses. Conclusion This study implicates several intervention components to be developed and tested as favorably supporting caregivers, namely, reinforcing positive aspects of caregiving, cultivating open communication, and acknowledging the prior experiences and social foundation of the caregiver's life that can be supportive or burdensome. PMID:22612407
Myaskovsky, Larissa; Posluszny, Donna M.; Schulz, Richard; DiMartini, Andrea F.; Switzer, Galen E.; Dabbs, Annette DeVito; McNulty, Mary L.; Kormos, Robert L.; Toyoda, Yoshiya; Dew, Mary Amanda
Cardiothoracic transplant programs generally require that transplant recipients have family caregivers to assist them post-transplant. The burden of caregiving on the family members remains poorly understood. If caregivers’ well-being is compromised by caregiving, it may bode poorly for transplant recipients’ own health in the long-term post-transplant. We examined caregiver HRQOL during the first year after their family member’s transplant, its predictors, and its relationship to subsequent patient survival. Adult (aged 18+) caregivers of 242 cardiothoracic transplant recipients (lung=134; heart=108) completed assessments of demographics, psychosocial characteristics, and caregiver burden at 2 months post-transplant, and HRQOL at 2, 7 and 12 months post-transplant. Recipients’ survival time was obtained from medical records. Caregiver HRQOL was generally high across the first year post-transplant in emotional and social functioning; caregiver physical functioning significantly worsened. There were no differences by type of recipient transplant. Greater caregiver burden predicted poorer caregiver HRQOL in several physical domains at 12 months post-transplant. Transplant recipients whose caregivers had lower perceived general health at 12 months post-transplant showed poorer survival rates during the subsequent 7 years of follow-up. Transplant teams should identify those caregivers at risk for poorer general health post-transplant in order to maximize positive outcomes for the entire family. PMID:22958758
Nakken, Nienke; Janssen, Daisy J A; van den Bogaart, Esther H A; Wouters, Emiel F M; Franssen, Frits M E; Vercoulen, Jan H; Spruit, Martijn A
The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status. PMID:26324811
Choi, JiYeon; Tate, Judith A.; Hoffman, Leslie A.; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P.; Given, Barbara A.; Sherwood, Paula R.
Context Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers’ physical health can assist in identifying critical time points and potential targets for intervention. Objectives To describe self-reported fatigue in caregivers of ICU survivors from patients’ ICU admission to ≤ two weeks, two- and four-months post-ICU discharge. Methods Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form-36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Results Forty seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43% to 53% of caregivers across the time points and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients’ symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. Conclusion In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization. PMID:24439845
Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A
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
Becker, David J; Kilgore, Meredith L; Morrisey, Michael A
Osteoporosis currently affects 10 million Americans and is responsible for more than 1.5 million fractures annually. The financial burden of osteoporosis is substantial, with annual direct medical costs estimated at 17 to 20 billion dollars. Most of these costs are related to the acute and rehabilitative care following osteoporotic fractures, particularly hip fractures. The societal burden of osteoporosis includes these direct medical costs and the monetary (eg, caregiver time) and nonmonetary costs of poor health. The aging of the US population is expected to increase the prevalence of osteoporosis and the number of osteoporotic fractures. Growth of the older adult population will pose significant challenges to Medicare and Medicaid, which bear most of the cost of osteoporosis. Efforts to address the looming financial burden must focus on reducing the prevalence of osteoporosis and the incidence of costly fragility fractures. PMID:20425518
Diefenbeck, Cynthia A; Klemm, Paula R; Hayes, Evelyn R
Support groups fill a critical void in the health care system, harnessing the power of shared experiences to provide support to group members. Likewise, family caregivers fill a void in the health care system, providing billions in unpaid care to the chronically ill. Caregiver support groups offer an opportunity for alleviating the psychological burden of caregiving. The power of any group, including a support group, to foster psychological well-being lies in its ability to cultivate Yalom's therapeutic factors. Gaps in the literature remain regarding the ability of non-prototypical groups to promote therapeutic mechanisms of change. The purpose of this study was to determine if and when Yalom's therapeutic group factors emerged in a peer-led support group delivered in an asynchronous, online format. Qualitative content analysis utilizing deductive category application was employed. Participants' responses were coded and frequency counts were conducted. Results revealed that 9 of 11 therapeutic factors emerged over the course of the group, with Group Cohesiveness, Catharsis, Imparting of Information, and Universality occurring most often. Several factors, including Interpersonal Learning, Corrective Recapitulation of the Primary Family Group, Imitative Behavior, and Development of Socializing Techniques were absent or virtually absent, likely due to the peer-led format of the group. Progression of therapeutic factors over the course of the group is presented. Findings demonstrate the presence of a variety of Yalom's therapeutic factors in an asynchronous, peer-led online support group. PMID:24350748
Ciałkowska-Kuźmińska, Magdalena; Kiejna, Andrzej
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. PMID:20919503
Miravitlles, Marc; Peña-Longobardo, Luz María; Oliva-Moreno, Juan; Hidalgo-Vega, Álvaro
Objective Chronic obstructive pulmonary disease (COPD) is a very prevalent and invalidating disease. The aim of this study was to analyze the burden borne by informal caregivers of patients with COPD. Methods We used the Survey on Disabilities, Personal Autonomy, and Dependency Situations (Encuesta sobre Discapacidad, Autonomía personal y Situaciones de Dependencia [EDAD]-2008) to obtain information on the characteristics of disabled individuals with COPD and their caregivers in Spain. Additionally, statistical multivariate analyses were performed to analyze the impact that an increase in dependence would have on the problems for which caregivers provide support, in terms of health, professional, and leisure/social dimensions. Results A total of 461,884 individuals with one or more disabilities and with COPD were identified, and 220,892 informal caregivers were estimated. Results showed that 35% of informal caregivers had health-related problems due to the caregiving provided; 83% had leisure/social-related problems; and among caregivers of working age, 38% recognized having profession-related problems. The probability of a problem arising was significantly associated with the degree of dependence of the patient receiving care. Caregivers of patients with great dependence showed a 39% higher probability of presenting health-related problems, 27% more professional problems, and 23% more leisure problems compared with those with nondependent patients. Conclusion The results show the large impact on society in terms of the welfare of informal caregivers of patients with COPD. A higher level of dependence was associated with more severe problems in caregivers, in all dimensions. PMID:25709429
Monin, Joan K.; Schulz, Richard
Examining the interpersonal effects of suffering in the context of family caregiving is an important step to a broader understanding of how exposure to suffering affects humans. In this review article, we first describe existing evidence that being exposed to the suffering of a care recipient (conceptualized as psychological distress, physical symptoms, and existential/spiritual distress) directly influences caregivers’ emotional experiences. Drawing from past theory and research, we propose that caregivers experience similar, complementary, and/or defensive emotions in response to care recipient suffering through mechanisms such as cognitive empathy, mimicry, and conditioned learning, placing caregivers at risk for psychological and physical morbidity. We then describe how gender, relationship closeness, caregiving efficacy, and individual differences in emotion regulation moderate these processes. Finally, we provide directions for future research to deepen our understanding of interpersonal phenomena among older adults, and we discuss implications for clinical interventions to alleviate the suffering of both caregivers and care recipients. PMID:19739924
Sanders, Sara; Ott, Carol H.; Kelber, Sheryl T.; Noonan, Patricia
An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to…
Ae-Ngibise, Kenneth Ayuurebobi; Doku, Victor Christian Korley; Asante, Kwaku Poku; Owusu-Agyei, Seth
Background Families and friends who give care to people with mental disorders (MDs) are affected in a variety of ways and degrees. The interplay of caregiving consequences: poverty, discrimination and stigma, lack of support from others, diminished social relationships, depression, emotional trauma, and poor or interrupted sleep are associated caregiver burden. Objective The burden of care on caregivers of people living with MDs was assessed in two districts located in the middle part of Ghana. Coping strategies and available support for caregivers of MDs were also assessed. Design A qualitative study was carried out involving 75 caregivers of participants with MDs registered within the Kintampo Health and Demographic Surveillance Systems. Data were gathered from caregivers about their experiences in providing care for their relations with MDs. Results Caregivers reported various degrees of burden, which included financial, social exclusion, emotional, depression, and inadequate time for other social responsibilities. Responsibilities around caregiving were mostly shared among close relatives but to a varying and limited extent. Religious prayers and the anticipation of cure were the main coping strategies adopted by caregivers, with expectation of new treatments being discovered. Conclusions Emotional distress, stigma, financial burden, lack of support networks, social exclusion, health impact, and absence of decentralised mental health services were experienced by family caregivers. These findings highlight the need for interventions to support people with MDs and their caregivers. This might include policy development and implementation that will decentralise mental health care provision including psychosocial support for caregivers. This will ameliorate families’ financial and emotional burden, facilitate early diagnosis and management, reduce travel time to seek care, and improve the quality of life of family caregivers of persons with MDs. PMID:25967587
Kochaki Nejad, Zahra; Mohajjel Aghdam, Alireza; Hassankhani, Hadi; Sanaat, Zohreh
Background: In recent years, the caregiving responsibilities of cancer patients’ family members have increased dramatically. Reducing caregiver strain and burden supports the mission of professional nursing. Objectives: The aim of this study was to determine and compare the caregiver strain index scores of breast cancer informal caregivers, before and after a patient-caregiver educational and telephone follow-up program. Patients and Methods: This is an experimental two-group design study. Participants were recruited from an outpatient chemotherapy unit of the largest hematology and oncology research center in Northwest Iran. Thirty patient-caregiver pairs were randomly allocated to intervention and control groups. The intervention group received 2 face-to-face education sessions at bedside and 4 subsequent telephone follow-up sessions. The control group received routine care. Pre and post tests were administered in both groups pre and post intervention. To analyze the data, SPSS (13th version) software was used. Results: The caregiver strain index decreased significantly in the intervention group after the patient-caregiver education and follow-up (P < 0.001), while the control group’s scores did not change (P = 0.04). Conclusions: It appears that the patient-caregiver education and follow-up program had a beneficial effect on the caregiver strain index compared to the usual care. PMID:27247782
Netshandama, Vhonani O.; Mudau, Makondelela J.
Background The establishment of home-based care (HBC) programmes in developing countries has resulted in a shift of burden from hospitals to communities where palliative care is provided by voluntary home-based caregivers. Aim The study investigated the impact of caregiving on voluntary home-based caregivers. Setting The study was conducted at HBC organisations located in Mutale Municipality of Limpopo Province, South Africa. Methods A quantitative cross-sectional descriptive survey design was applied to investigate the impact of caregiving on voluntary home-based caregivers. The sample was comprised of (N = 190) home-based caregivers. Home-based caregivers provide care to people in need of care in their homes, such as orphans, the elderly and those suffering from chronic illnesses such as tuberculosis, HIV and/or AIDS, cancer and stroke. Self-administered questionnaires were used to collect data which were analysed descriptively using the Statistical Package for the Social Sciences software, Version 20. Results The results showed that 101 (53.2%) participants were worried about their financial security because they were not registered as workers, whilst 74 (39.0%) participants were always worried about getting infection from their clients because they often do not have protective equipment. Conclusion Voluntary home-based caregivers have an important role in the provision of palliative care to people in their own homes, and therefore, the negative caregiving impact on the lives of caregivers may compromise the provision of quality palliative care. PMID:27380854
van Campen, Cretien; de Boer, Alice H; Iedema, Jurjen
Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers. PMID:22571683
... Home Current Issue Past Issues Feature: Senior Living Long Distance Caregiving Past Issues / Summer 2009 Table of ... distance to help him? Caregiving is often a long-term task. What begins with an occasional phone ...
The Department of Veterans Affairs (VA) adopts, with changes, the interim final rule concerning VA's Program of Comprehensive Assistance for Family Caregivers. VA administers this program to provide certain medical, travel, training, and financial benefits to caregivers of certain veterans and servicemembers who were seriously injured during service on or after September 11, 2001. Also addressed in this rulemaking is the Program of General Caregiver Support Services that provides support services to caregivers of veterans from all eras who are enrolled in the VA health care system. Specifically, changes in this final rule include a requirement that Veterans be notified in writing should a Family Caregiver request revocation (to no longer be a Family Caregiver), an extension of the application timeframe from 30 days to 45 days for a Family Caregiver, and a change in the stipend calculation to ensure that Primary Family Caregivers do not experience unexpected decreases in stipend amounts from year to year. PMID:25581943
... Communicator The family caregiver has many roles besides giving the patient hands-on care. Most people think ... caregiver becomes an advocate for the patient by giving this information to the health care team. Although ...
Burton, Lynda C.; Zdaniuk, Bozena; Schulz, Richard; Jackson, Sharon; Hirsch, Calvin
Describes transitions over 5 years among community-dwelling elderly spouses into and within caregiving roles and associated health outcomes. The trajectory of health outcomes associated with caregiving was generally downward. Those who transitioned to heavy caregiving had more symptoms of depression, and poorer self-reported health and health…
This research examined the relationship between ethnicity and the psychological status and behavior of Jewish and non-Jewish caregivers in relation to the impaired elderly. It was hypothesized that Jewish caregivers would make significantly more use of formal services than non-Jewish (usually Christian) caregivers. Two separate data sets were…
OBJECTIVES To provide an overview of research and practice related to the physical well-being of oncology caregivers. DATA SOURCES Literature retrieved through the PUBMED and CINAHL databases. CONCLUSION Caregivers play an important role in supporting people with cancer at every stage of the illness trajectory. Because caregiving is inherently stressful, caregivers should be routinely included in the assessment and treatment of patients with cancer. IMPLICATIONS FOR NURSING PRACTICE Oncology nurses are uniquely positioned to play a vital role in recognizing caregiver strain and intervening to break the cycle of unremitting physical and psychosocial burden. PMID:23107180
Katz-Saltzman, Shiri; Biegel, David E.; Townsend, Aloen
This cross-sectional study utilized a stress-process model to examine the impact of caregivers' (N = 82) perceptions of their relationship quality with a female family member (i.e., care-recipient) with substance-use or co-occurring substance and mental disorders on caregivers' perceived burden. Regression findings indicate that relationship…
Sherwood, Paula R; Price, Thomas J; Weimer, Jason; Ren, Dianxu; Donovan, Heidi S; Given, Charles W; Given, Barbara A; Schulz, Richard; Prince, Jennifer; Bender, Catherine; Boele, Florien W; Marsland, Anna L
Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular. PMID:26907491
Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep
All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly
Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep
All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly
Lewy body dementia (LBD) is the second most common neurodegenerative dementia in older adults, yet there remains a delay in diagnosis that limits healthcare providers’ ability to maximize therapeutic outcomes and enhance patient and caregiver quality of life. The impact of LBD on patients includes limiting the potential exposure to medications that may cause adverse outcomes, and addressing how the disease manifestations, such as autonomic features and behavior, affect quality of life. LBD impact on caregivers has been discussed to a greater degree in the literature, and there is clear evidence of caregiver burden and grief associated with disease manifestations. Other common caregiving concerns, such as access to care, prevention of hospitalization, managing behavior, and reviewing prognosis and nursing home placement, are important to comprehensively address the needs of patients with LBD and their caregivers. PMID:25031635
Goldberg-Arnold, Jill S.; Fristad, Mary A.; Gavazzi, Stephen M.
Childhood onset mood disorders can lead to stress and parenting burden as well as problems within family, peer, and school settings. Article highlights research related to caretaker burden among parents, and describes a multifamily psychoeducation group intervention designed to alleviate some of these problems. Parental reports of intervention…
Hsiao, Peng-Ching; Chu, Chi-Ming; Sung, Pei-Yi; Perng, Wann-Cherng; Wang, Kwua-Yun
Background Because Taiwan has the fastest aging rate among developed countries, care for the elderly is becoming more prominent in the country. Primary family caregivers play an important role in patient health and health promotion behavior. Chronic obstructive pulmonary disease (COPD), an age-related disease, is a major public health problem with high morbidity and mortality and can be a long-term burden for family members; however, little attention has been given to the differences in COPD care between elder caregivers and other caregivers. This study aimed to investigate the differences between elder family caregivers and non-elder family caregivers caring for COPD patients in Taiwan, including caring behavior, caregiver response, and caring knowledge. Methods This cross-sectional study was conducted between March 2007 and January 2008; 406 primary family caregivers of COPD patients from the thoracic outpatient departments of 6 hospitals in north-central Taiwan were recruited to answer questionnaires measuring COPD characteristics, care behavior, caregiver response, and COPD knowledge. All questionnaires, which addressed caregiver knowledge, care behaviors, and care reactions, were shown to have acceptable validity and reliability, and the data were analyzed using univariate and generalized linear model techniques. Results The elder caregivers group had 79 participants, and the non-elder caregivers comprised 327 participants. The COPD-related knowledge scale results were positively correlated with the family caregiver caring behavior scale, suggesting that better COPD-related knowledge among family caregivers may result in improved caring behavior. After adjusting for all possible confounding factors, the elder caregivers had significantly lower COPD-related knowledge than the non-elder caregivers (P<0.001). However, there were no significant differences in the family caregiver caring behavior scale or the caregiver reaction assessment scale between the two
Pot, A. M.; Deeg, D. J. H.; van Dyck, R.; Jonker, C.
Examines whether the role of caregiving appraisal explains why stressors in the caregiving situation affect caregivers' psychological distress. Results show that for spouse caregivers, perceived pressure explains the association between their caregiving tasks and psychological distress. Results also show clear mediator effects of perceived…
Holmes, Ann M.; Deb, Partha
BACKGROUND: As downsizing of institutional care continues, patients discharged are likely to have more severe mental illnesses, and to have experienced longer tenures within institutions than patients who have been discharged in the past. As greater numbers of patients are removed from mental hospitals, the objective burden experienced by informal care-givers may increase, particularly if formal care levels are inadequate. AIMS OF THE STUDY: This paper documents who assumes informal care-giver roles, and the form such care-giving takes for patients discharged from a state hospital. Specifically, this paper identifies (i) what factors affect a person's decision to assume a care-giver role, including the participation of other network members in care-giving, (ii) what factors influence whether care-giving is provided in time or in direct purchase of care and (iii) how the patient's treatment location affects the decision of the network member to assume any care-giving role. DATA AND ANALYTICAL METHODS: Data for this paper are taken from a longitudinal study of the closure of a state mental hospital in central Indiana. Seventy-seven patients were asked to identify their community networks. Ninety-eight network members were surveyed about the informal care, both in time or through direct expenditures, they provided to these patients one year after discharge. Care-giving relationships were estimated using a multivariate probit model. Such a model estimates the extent to which the decision to provide care in either form depends on the care-giving activities assumed by other network members associated with a given patient, as well as the characteristics of individual patients and network members. RESULTS: Forty-one per cent of network members provided some level of informal care, with 13.3% providing some care in time, and 35.7% providing some care through direct expenditures. A positive relationship was found between participation in informal care-giving and the
This research study examines adult daughters' measures of coping in their roles as caregivers of aging parents, thus affirming Pearlin, Lieberman, Menaghan & Mullan' model (1981). The model presents the mental health of caregiver daughters as a function of demographic variables, role burden and stresses resulting from other relationships within the family, as well as personality variables such as mastery and self-esteem. The research examined 224 women in Israel and presented four major assumptions relating to the extent of the correlation between: a) the characteristics of the daughter and her emotional wellbeing; b) the stresses and role burden of the caregiver and her emotional wellbeing; c) the caregiver's self image and her emotional wellbeing, and d) gender role orientation and family support and the emotional wellbeing of the caregiver. Research main finding is that gender role orientation of female caregivers affects their well being. The findings indicate mutual relations between all elements of the research model and actually validate all of the four research assumptions. Findings show that of the mediating variables in the model, family support and male gender role orientation moderate the intensity of the stresses experienced by the daughter in her role as caregiver. PMID:19197636
Garand, Linda; Lingler, Jennifer H.; Deardorf, Kaitlyn E.; DeKosky, Steven T.; Schulz, Richard; Reynolds, Charles F.; Dew, Mary Amanda
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
Löthman, Anna; Jörgensen, Leif; Rylander, Anders; Koernig, Thomas
Background: There is a lack of studies of the size of burden associated with informal care giving in psychosis. Aims: To evaluate the objective and subjective burden of informal care giving to patients with psychoses, and to compare a diary and recall method for assessments of objective burden. Method: Patients and their informal caregivers were recruited from nine Swedish psychiatric outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and COPE index scales. The objective burden (time and money spent) was assessed by the caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and 2. Results: One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5 hours/week and about 14% of their gross income on care-related activities. The time spent was underestimated by two to 20 hours when assessed by recall than by daily diary records. The most prominent aspects of the subjective burden were mental problems. Conclusion: Despite a substantial amount of time and money spent on care giving, the informal caregivers perceived the mental aspects of burden as the most troublesome. The informal caregiver burden is considerable and should be taken into account when evaluating effects of health care provided to patients with psychoses. PMID:22100570
Williams, Allison M; Wang, Li; Kitchen, Peter
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
Barutcu, Canan Demir; Mert, Hatice
This study was conducted to evaluate the effectiveness of support group intervention applied to the caregivers of individuals with heart failure on caregiver outcomes. Quasi-experimental research was conducted with 69 caregivers as control (n = 35) and intervention (n = 34) groups in the cardiology outpatient clinic of a university hospital. The intervention group participated in support group meetings structured according to the Neuman Systems Model, and the data were collected from both the intervention and control groups before the intervention and 3 and 6 months later. Caregivers in the intervention group had significantly lower burden scores compared with the control group in all subdimensions except objective personal care, in terms of the group × time interaction in a statistical way (P < .05). Caregivers in the intervention and control groups had similar scores of depression symptoms (P > .05). The burden of caregivers in the intervention group showed a statistically significant decrease compared with the preintervention in all dimensions at 3 months. Thus, it is suggested to extend the support group interventions for caregivers of patients with heart failure and conduct these interventions in a longer period. PMID:27501210
Mitrani, Victoria B.; Lewis, John E.; Feaster, Daniel J.; Czaja, Sara J.; Eisdorfer, Carl; Schulz, Richard; Szapocznik, Jose
Purpose: The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress-process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and…
Caring for the Caregiver is information for persons helping to care for people with cancer. The emphasis is on what caregivers can do to help themselves at this stressful time. Topics included are: Who Is a Caregiver, Your Feelings, Asking For Help, Caring for Yourself, Going With Your Loved One to Medical Visits, Talking With Others, Remember, Other Resources for Caregivers. The information is written on a basic level and it is very suitable for health professionals to share with persons helping to care for family members or friends who have cancer. The National Cancer Institute posted this information on its website last June 29. PMID:19062356
Phillips, Linda R
Although most women find it difficult to provide care to an older family member, some women face additional challenges and health risks because the care recipient is abusive or aggressive toward them. This study tested a 12-week psychoeducative nursing intervention intended to decrease the frequency and intensity of physical and verbal/psychological aggression toward older caregiving wives and daughters by care recipients and improve selected abuse-related outcomes. The intervention, which focused on pattern identification, advocacy counseling, reframing of the caregiving situation, and nonconfrontational caregiving strategies, was individualized and highly interactive with emphasis placed on mutual problem solving and mutual planning. Subjects included women older than 50 who provided care to elders older than 55. Subjects were randomly assigned to group (intervention, N = 38; control, N = 45) and data collectors were "blinded" to group assignment. Findings indicated the intervention significantly reduced frequency of verbal/psychological aggression, and feelings of anger for caregivers providing care to fathers or husbands. It was not effective for caregivers providing care to mothers, and it did not reduce burden. Implications for nursing include raising awareness about the special vulnerabilities of older caregivers, providing provocative new information about the gender-based power dynamics in caregiving situations and underscoring the need for nurses to assume a stronger leadership role in building science with regard to family caregiving. PMID:18497592
Choi, JiYeon; Hoffman, Leslie A.; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P.; Given, Barbara; Sherwood, Paula R.
Background Studies of family caregivers of the critically ill have mainly focused on the psychological impact of the patients’ stay in the intensive care unit and related stress. Despite known associations between stress and physical health, limited attention has been paid to the need to promote and maintain physical health in these caregivers. Objective To explore how family caregivers’ health risk behaviors are associated with patients’ preexisting care needs and the caregivers’ depressive symptoms and burden. Methods During the intensive-care-unit stay of critically ill patients (who required mechanical ventilation for ≥4 days), 50 family caregivers were surveyed to determine the caregivers’ depressive symptoms, burden, and health risk behaviors. Data were also collected on patients’ care needs before admission to the intensive care unit. Results One or more health risk behaviors were reported by 94% of family caregivers. More than 90% of caregivers reported depressive symptoms above the score indicating risk for clinical depression. A high level of burden was reported by 36% of caregivers. More health risk behaviors were associated with higher scores of depressive symptoms and burden (P<.001 for both). Caregivers’ responses did not differ according to patients’ preexisting care needs. Conclusion Health risk behaviors of family caregivers are associated with greater perceptions of burden and/or depressive symptoms but not with patients’ care needs before admission to the intensive care unit. PMID:23283087
Hilgeman, Michelle M; Allen, Rebecca S; DeCoster, Jamie; Burgio, Louis D
The authors examined the influence of positive aspects of caregiving (PAC) as a moderator of treatment outcome across 12 months in 1 of the original sites of the Resources for Enhancing Alzheimer's Caregiver Health I project. They used multilevel random coefficients regression analysis to predict time-varying PAC, depression, behavioral bother, and daily care burden in Alzheimer's caregivers (N = 243; mean age = 60.89, SD = 14.19). They found that time-varying PAC was predicted by time-varying daily care burden. They also found significant effects of time-varying PAC for depression, behavioral bother, and daily care burden. Notably, a PAC x Phase x Treatment effect was found for daily care burden, such that individuals who endorsed less PAC benefited most from the intervention across 12 months. The tendency to positively appraise the caregiving experience (i.e., PAC) in response to chronic stressors such as Alzheimer's caregiving may affect individuals' responsiveness to, and benefit from, interventions, whereas only daily care burden affected the tendency to find enjoyment in caregiving across 12 months. Future intervention research should assess individual PAC in order to better tailor interventions to caregiving needs. PMID:17563191
... Month Friend: Living Independently Group Improving Doctor/ Caregiver Communications Helpful Ideas for Family Caregivers From NFCA There is much to be gained by improving communications between family caregivers and health care professionals, especially ...
Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti
Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's psychological abusive behavior, reducing work stress and promoting knowledge of geriatric care-giving among a group of caregivers. A quasi-experimental design using a case control pre-post test approach was conducted. A total of 100 participants completed the study with 50 caregivers in each group. The research instruments included the Caregiver Psychological Elder Abuse Behavior Scale (CPEAB), the Work Stressors Inventory (WSI), and the Knowledge of Gerontology Nursing Scale (KGNS). The results showed that the intervention had significant effects in alleviating caregiver psychological abuse behavior and increasing care-giving knowledge in the experimental group (p = .048; .018). However, the intervention had no measurable effect on work stress (p = .66). Findings have important implications for education and programming for facility administers and long-term care policy makers when planning quality improvement for elderly care. PMID:18516696
Korn, Leslie; Logsdon, Rebecca G.; Polissar, Nayak L.; Gomez-Beloz, Alfredo; Waters, Tiffany; Ryser, Rudolph
Purpose: Although it is widely recognized that caregivers of individuals with dementia experience elevated stress that places them at increased risk for health problems, little is known about how caregiving stress may be alleviated among underserved ethnic minority populations. The purpose of this study was to compare a complementary and…
McGinnis, Kathleen A.; Schulz, Richard; Stone, Roslyn A.; Klinger, Julie; Mercurio, Rocco
Purpose: We assess the effects of racial or ethnic concordance between caregivers and interventionists on caregiver attrition, change in depression, and change in burden in a multisite randomized clinical trial. Design and Methods: Family caregivers of patients with Alzheimer's disease were randomized to intervention or control groups at six sites…
This article addresses the dilemmas of elderly Chinese women as spousal caregivers in Hong Kong in the 1990s. An in-depth ethnographic approach was used to draw on a convenience sample of 20 elderly wives who were caregivers from Hong Kong. At the conceptual level, the discussion highlights how caregiving is rooted in complex, culturally-based models of contemporary practices, sociohistoric patterns, and gender-specific obligations. The key themes identified were marital duty-bound roles and responsibilities, reciprocity and burden, public guidelines and upholding reputations as Chinese wives, monetary restrictions, affection as an emotional force to sustain caregiving, effects of the caregiving role, and the creation of self-identity through caregiving. The model proposed for interpreting elderly Chinese wives' caregiving obligations highlights the tension-filled links between Confucianism and government guidelines, early and ongoing socializing experiences, and self-identity. PMID:15870240
McCurry, Susan M.; Logsdon, Rebecca G.; Teri, Linda; Vitiello, Michael V.
Estimates suggest that there are more than 10 million adult caregivers of persons with dementia, two-thirds of who experience some form of sleep disturbance during the course of their caregiving career. Health care professionals are in the best position to detect and address this significant public health problem. Three major contributors to caregiver sleep disturbance are discussed in this paper: 1) the presence of caregiver disrupted sleep routines; 2) caregiver burden and depression; and, 3) the caregiver’s physical health status. Successful treatment of a caregiver’s sleep disturbance requires careful consideration of each of these contributors. We review and analyze the scientific literature concerning the multiple complex factors associated with the development and maintenance of sleep disturbances in caregivers. We provide a clinical vignette that illustrates the interplay of these contributing factors, and close by providing recommendations for clinicians and researchers treating and investigating the development and maintenance of sleep problems in family caregivers. PMID:17287134
Stewart, Miriam; Barnfather, Alison; Neufeld, Anne; Warren, Sharon; Letourneau, Nicole; Liu, Lili
Accessible support programs can improve health outcomes for family caregivers of older relatives with a chronic condition. Over the course of 6 months, 27 experienced family caregivers provided weekly support via the telephone to 66 individuals, either new family caregivers of seniors recently diagnosed with stroke or newly vulnerable family caregivers (i.e., facing increasing demands from the deterioration of their senior relative's condition) of seniors with Alzheimer's disease. Qualitative data documented the perceived impact of the intervention, including increased satisfaction with support, coping skills, caregiving competence and confidence, and decreased caregiver burden and loneliness. Caregivers identified varied support processes that overcame support deficits in their social networks. These processes can facilitate replication in future research and inform practice, programs, and policies. PMID:16821200
Phillips, Sara S; Ragas, Daiva M; Hajjar, Nadia; Tom, Laura S; Dong, XinQi; Simon, Melissa A
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. PMID:26782869
Thunyadee, Chanya; Sitthimongkol, Yajai; Sangon, Sopin; Chai-Aroon, Teradech; Hegadoren, Kathleen M
This cross-sectional study examined relationships among factors influencing caregiver burden, depressive symptoms, and physical health in family caregivers of individuals with schizophrenia. Two hundred family caregivers of individuals with schizophrenia completed standardized questionnaires related to depressive symptoms, physical health, perceptions of burden, coping, and social support. The results revealed that 19.5% of family caregivers of individuals with schizophrenia experienced significant depressive symptoms and 65.5% perceived themselves in poor physical health. Burden, self-controlling coping strategies, and physical health status were all independently predictive of depressive symptoms. Two emotion-focused coping strategies (self-controlling and escape-avoidance) were independently predictive of caregiver burden. Only burden predicted physical health status. The findings suggest that health professionals who provide community care for those with schizophrenia need to consider the "unit of care" as the family rather than the individual. The health status of family caregivers should be routinely assessed. Individualized interventions to reduce family burden could include community-based health professionals as well as trained community volunteers, opportunities for social interaction, and improving self-care for all family members. PMID:26081195
The “supportive community” programs in Israel provide a basket of services for older persons living in their own homes. This study examined the differences between caregiver burden and quality of life of 55 offspring who were the primary caregivers of their older parents who were members of a supportive community, compared to 64 offspring whose parents were nonmembers. The findings showed that the role stress factor of caregiving burden was lower, and the psychological health domain of quality of life was higher among offspring whose parents were members of supportive communities. Some of the predictor variables of burden were income status of caregiver, sharing with others in caregiving, and membership of the parent in a supportive community. The primary predictor variable of the quality of life was caregiving burden. The practical conclusion of this study is to further develop and market supportive community programs in various communities. PMID:26346881
Spring, Heather J; Rowe, Meredeth A; Kelly, Annette
This article reports the qualitative arm of a mixed-methods study designed to test an in-home nighttime monitoring system (NMS) that tracks the nighttime activity of persons with dementia. Fourteen caregiver interviews were analyzed using grounded theory/full conceptual description methods to determine the issues associated with providing care at night and to explore the benefits of using the NMS. Caregivers not using the NMS experienced sleep disruption, overwhelming worry, and loss of personal space, leading to decreased energy and changes in mood. When the NMS was used, caregivers reported improved "peace of mind." The fear and uncertainty associated with worry was alleviated by reliable alerts regarding the whereabouts of the person with dementia. Some caregivers were able to better balance needs for personal space with needs to remain in contact with the person with dementia. Generally, caregivers reported improved quality of sleep, although some caregivers reported more awakenings due to the system alerts. PMID:20077992
Evans, Rachael; Catapano, Michael; Brooks, Dina; Goldstein, Roger; Avendano, Monica
BACKGROUND: The trend of patients who are invasively ventilated to prefer home care is one that benefits both the patient and the health care system. However, this assumes a role for patients’ family members to become informal caregivers. OBJECTIVE: To explore the impact of caring for a ventilator-assisted individual on informal caregivers. METHODS: A descriptive design with semistructured caregiver interviews and the Caregiver Burden Inventory were used. Participants were informal caregivers of a family member with a progressive neuromuscular disease on invasive ventilation for at least six months. Transcript coding was performed and regularly reviewed, and recruitment continued until data saturation. Qualitative analysis was based on ‘thematic analysis’. RESULTS: A total of 21 caregivers were interviewed. Five themes developed: a sense of duty; restriction of day-to-day life; physical and emotional burden; training and education; and the need for more paid support. Caregivers described a sense of duty to take care of loved ones, but suffered a significant restriction of their own time with a negative impact on their physical and mental health. The initial transfer home was highlighted as the most stressful part of the process. The Caregiver Burden Inventory scores supported a high level of burden: median 49 (interquartile range 39.5 to 53.0) of a maximum 96. CONCLUSION: Homecare for ventilator-assisted individuals with progressive neuromuscular disease causes significant burden to informal care-givers. Approaches to lessen this burden, such as increased paid care, improved professional support and respite care, may enable home ventilation to be a more sustainable modality of care. PMID:23248801
Schulz, Richard; Cook, Thomas B.; Beach, Scott R.; Lingler, Jennifer H.; Martire, Lynn M.; Monin, Joan K.; Czaja, Sara J.
Objective Family caregivers generally underestimate the health and well-being of Alzheimer’s disease (AD) patients when compared to patient self-assessments. The goals of this study were to identify caregiver, patient, and contextual factors associated with caregiver rating bias. Methods 105 patients with AD and their family caregivers were assessed twice by trained interviewers one year apart. In separate interviews, caregivers were asked to rate the quality of life and suffering of their patient relative, and patients provided self-ratings using the same structured instruments. Multivariate cross-sectional and longitudinal analyses were used to identify predictors of caregiver-patient discrepancies. Results Caregivers consistently reported significantly higher levels of suffering and lower levels of quality of life than patients. Caregiver psychological well-being and health status accounted for a substantial portion of the difference in caregiver and patient ratings in both cross-sectional and longitudinal analyses. Caregiver depression and burden were consistently positively associated with the magnitude of caregiver-patient discrepancy, and caregiver health status was negatively associated with the size of the discrepancy. Conclusions Caregiver assessments of dementia patients may determine the type and frequency of treatment received by the patient, and caregivers’ ability to reliably detect change in patient status can play a critical role in evaluating the efficacy of therapeutic interventions and pharmacologic agents. Clinicians and researchers working with dementia patients who rely on caregiver reports of patient status should be sensitive to the health and well-being of the caregiver and recognize that caregiver assessments may be negatively biased when the caregiver’s own well-being is compromised. PMID:23290199
Koffman, J; Taylor, S
Caring for elderly mentally ill people impacts on many aspects of informal caregivers' lives. Respite care is one of the few strategies aimed directly at caregivers and its benefits have been well documented. As part of a wider strategy review of continuing care and respite care for the growing elderly population in an inner London health authority we focused specifically on the needs of caregivers and their elderly dependants with a diagnosis of dementia. A focus group was organised in order to elicit caregivers' perspectives on caring and their views on local services. This component of our overall review highlights the importance of investing further in informal caregivers who, to date, have successfully prevented a large number of admissions to continuing care facilities. PMID:9510693
Sims-Gould, Joanie; Martin-Matthews, Anne
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…
Outpatient palliative care services are increasing in their effectiveness worldwide, because they can better focus on both patients' and caregivers' needs at all stages of the disease requiring this type of interventions. This was demonstrated before by various studies that,however, were performed mostly on patients with malignancies and thatyielded encouraging results about the severity of the symptoms and about the burden of care in the caregivers. In this analysis performed on a mixture of patients with malignant and nonmalignant diseases, Groh et al. demonstrate that the outpatient team intervention was able to reduce the severity of symptoms such as pain or digestive symptoms and were able to minimize the burden of care of the primary caregivers. PMID:24138644
Burgard, Sarah A.
Received wisdom, some sociological theory and a handful of qualitative studies suggest that the "night shift" of caregiving work that interrupts sleep is a burden borne disproportionately by women. However, there is no broadly representative evidence to substantiate claims about who takes the night shift in contemporary American households.…
Lee, Yeonjung; Tang, Fengyan
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. PMID:24652908
Parvataneni, Rupa; Polley, Mei-Yin; Freeman, Teresa; Lamborn, Kathleen; Prados, Michael; Butowski, Nicholas; Liu, Raymond; Clarke, Jennifer; Page, Margaretta; Rabbitt, Jane; Fedoroff, Anne; Clow, Emelia; Hsieh, Emily; Kivett, Valerie; Deboer, Rebecca; Chang, Susan
The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers' questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which >50% of the patients and caregivers thought were "very important" but >30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients' lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value = 0.006) and finding time for personal needs (P value < 0.001). This study provides insights into areas to improve services for brain tumor patients and their caregivers. The caregivers' highest amount of burden is placed on their emotional needs, emphasizing the importance of providing appropriate medical and psychosocial support for caregivers to cope with emotional difficulties they face during the patients' treatment process. PMID:21311950
There is increasing interest in delivering efficacious interventions to caregivers. This study reports on the processes and findings from a modified approach of the Wraparound System of Care. The practice model is implemented over 4 phases and is based on 3 theoretical constructs and 10 principles. The evaluation utilized treatment fidelity measures and employed a quasi-experimental pretest/posttest design to examine caregiver outcomes (N = 120). Findings suggest significant improvement among caregivers' self-reported health, life satisfaction, well-being, and quality of life, as well as a reduction in caregiver risk and burden. Delineation of the processes used in the model are presented. PMID:24266658
Tremont, Geoffrey; Davis, Jennifer; Papandonatos, George D.; Grover, Christine; Ott, Brian R.; Fortinsky, Richard H.; Gozalo, Pedro; Bishop, Duane S.
Family caregivers of individuals with dementia are at heightened risk for emotional and mental health problems. Many caregivers do not seek assistance or become isolated in their caregiving role. Multi-component interventions have demonstrated efficacy for reducing emotional distress and burden, although these approaches are potentially costly and are not widely accessible. In response to these issues, we developed the Family Intervention: Telephone Tracking – Caregiver (FITT-C), which is an entirely telephone-based psychosocial intervention. The purpose of this paper is to describe the study design, methodology, and baseline data for the trial. This study uses a randomized controlled trial design to examine the efficacy of the FITT-C to reduce depressive symptoms and burden in distressed dementia caregivers. All participants (n = 250) received a packet of educational materials and were randomly assigned to receive 6 months of the FITT-C intervention or non-directive telephone support. The FITT-C intervention was designed to reduce distress in caregivers and is based on the McMaster Model of Family Functioning and the Lazarus, transition theory, and Folkman Stress and Coping Models. The primary dependent variables were depressive symptoms (Centers for Epidemiological Studies – Depression) and burden (Zarit Burden Interview, Revised Memory and Behavior Problems Checklist – Reaction). Secondary outcome measures included family functioning, self-efficacy, and health-related quality of life. Results of the study will provide important data about the efficacy of a telephone-based approach to reduce distress in dementia caregivers. PMID:23916916
Pickett, Treven C.; Wilder Schaaf, Kathryn P.; Taylor, Brent C.; Gravely, Amy; Van Houtven, Courtney Harold; Friedemann-Sánchez, Greta; Griffin, Joan M.
This was a hypothesis-generating exploration of relationships between caregiver training during TBI/polytrauma rehabilitation and caregiver mental health. In this cross-sectional study, 507 informal caregivers to US service members with TBI who received inpatient rehabilitation care in a Veterans Affairs' Polytrauma Rehabilitation Center from 2001 to 2009 completed a retrospective, self-report survey. Embedded in the survey were measures of caregiver mental health, including the National Institutes of Health's Patient Reported Outcome Measurement Information System (PROMIS) Anxiety and Depression Short Forms, the Rosenberg Self-Esteem scale, and the Zarit Burden Short Form. Though no groups endorsed clinical levels, mental health symptoms varied by caregiver training category (Trained, Not Trained, and Did Not Need Training). Caregivers who did not receive training on how to navigate healthcare systems endorsed higher depression and burden and lower self-esteem than those who did. Caregivers who did not receive training in supporting their care recipients' emotions endorsed higher anxiety, depression, and burden and lower self-esteem than those who did. Analyses also suggested a different association between training and mental health based on caregivers' relationship to the care recipient and the intensity of care recipient needs. Potential hypotheses for testing in future studies raised by these findings are discussed. PMID:26770015
Grover, Sandeep; Pradyumna; Chakrabarti, Subho
Coping is understood as the process of managing external or internal demands that are considered as taxing or exceeding the resources of the person. There is no formal classification of coping strategies, and these are understood as adaptive versus maladaptive and problem focuses versus emotion-focused. Understanding the commonly used coping strategies in a particular group of subjects can provide valuable insights for designing interventions to reduce the stress. In this review, we look at the literature which is available with regards to the coping strategies used by the caregivers of patients with schizophrenia. Findings suggest that caregivers of patients with schizophrenia use mixed type of coping mechanisms to deal with the stress of caregiving. The coping strategies are shown to have association with variables such as caregiver burden, caregiving experience, expressed emotions, social support, psychological morbidity in the caregivers, quality of life of caregivers and psychopathology in patients. One of the major limitations of the literature is that there is a lot of variability in the assessment instruments used across different studies to assess coping. PMID:26257476
Jervis, Lori L; Boland, Mathew E; Fickenscher, Alexandra
In recent years, a vast literature has accumulated on the negative effects on family caregivers of providing care to elders, while relatively little research has explored caregiving as a positive experience. Only a handful of studies have examined any aspect of informal caregiving among American Indians. This mixed methods study explores the negative and positive aspects of providing elder care among 19 northern plains American Indian family members. These caregivers described low levels of burden and high levels of reward, attributable to cultural attitudes toward elders and caregiving, collective care provision, strong reciprocal relationships with elders, enjoyment of elders, and relatively low levels of care provision. Caregiving manifested as part of a complex exchange of assistance rather than a unidirectional provision of assistance from the family member to the elder. That caregiving emerged as such an overwhelmingly positive experience in a community faced with poverty, alcohol disorders, trauma, and cultural traumatization is testimony to the important roles that elders often continue to play in these communities. PMID:21063902
de Vugt, Marjolein E; Verhey, Frans R J
In the absence of disease modifying therapies for dementia, the question rises what the benefits are of an early dementia diagnosis for patients and their caregivers. This paper reviews the caregiver perspective in dementia and addresses the question what the consequences are of promoting earlier dementia diagnosis. An early diagnosis offers caregivers the opportunity to advance the process of adaptation to the caregiver role. Caregivers that are better able to adapt to the changes that characterize dementia, feel more competent to care and experience less psychological problems. However, drawbacks of an early diagnosis may outweigh the benefits if people are left with a diagnosis but little support. There is convincing evidence that multicomponent caregiver interventions in the mild to moderate dementia stages are effective to improve caregiver well-being and delay institutionalization. However, there still exist a gap between the improved possibilities to diagnose people in the predementia stage versus the scarce knowledge on intervention effects in this very early stage. This stresses the urgent need for more research on early caregiver interventions that enhance role adaptation and that include long-term follow-up and cost-effectiveness evaluation. Early interventions may help caregivers in anticipating and accepting the future care role and transitions, with the increased possibility that caregivers can still involve the patient in the decision making process. As levels of stress and burden are still low in the predementia stage it provides excellent opportunities to empower the resources of caregivers. PMID:23689068
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Boerner, Kathrin; Schulz, Richard
Most deaths are preceded by chronic illness and disability and the provision of support by family caregivers. The purpose of this article is to describe how the caregiving experience affects bereavement, with an emphasis on the relationship between challenging caregiving situations and difficult grieving processes – often referred to as `complicated grief'. The article starts with a brief summary of the general literature on caregiving and bereavement. It then defines complicated grief and discusses why some caregivers may struggle with the death of their loved one. Finally, it offers practical suggestions for what professionals can do to help caregivers both before and after the death has occurred. PMID:20463850
We conducted descriptive observations of 5 individuals with developmental disabilities and severe problem behavior while they interacted with their caregivers in either simulated environments (an inpatient hospital facility) or in their homes. The focus of the study was on caregiver reprimands and child problem behavior. Thus, we compared the frequency of problem behavior that immediately preceded a caregiver reprimand to that immediately following a caregiver reprimand, and the results showed that the frequency of problem behavior decreased following a reprimand. It is possible that caregiver reprimands are negatively reinforced by the momentary attenuation of problem behavior, and the implications for long- and short-term effects on caregiver behavior are discussed. PMID:16270846
Rodakowski, Juleen; Skidmore, Elizabeth R.; Rogers, Joan C.; Schulz, Richard
Objective The objective of this study was to examine the role of social support in predicting depression in caregivers of adults aging with spinal cord injuries (SCI). Design Cross-sectional secondary data analyses were conducted for this study. Setting Participants were recruited from multiple community locations in Pittsburgh, PA and Miami, FL. Subjects Community-dwelling caregivers of aging adults with SCI (N=173) were interviewed as part of a multisite randomized clinical trial. Main measures The Center for Epidemiological Studies Depression Scale measured caregiver depression symptom levels. A hierarchical multiple regression analysis examined the effect of social support (social integration, received social support, and negative social interactions) on depressive symptoms levels for the caregivers of adults aging with SCI, controlling for demographic characteristics and caregiving characteristics. Results Caregivers were, on average, 53 years old (SD=15) and care-recipients were 55 years old (SD=13). Average Center for Epidemiological Studies Depression Scale scores indicated that sixty-nine (40%) caregivers had significant depressive symptoms (mean 8.69, SD=5.5). Negative social interactions (β̂ =.27, P<.01) and social integration (β̂ =−.25, P<.01) were significant independent predictors of depressive symptom levels in caregivers of adults aging with SCI. Conclusions Findings demonstrate that negative social interactions and social integration are associated with burden in caregivers of adults aging with SCI. Negative social interactions and social integration should be investigated in assessments and interventions intended to target caregiver depressive symptom levels. PMID:23117350
Ripich, D N
The loss of functional communication in Alzheimer disease (AD) results from the disproportionate breakdowns in the pragmatic and semantic areas of language in these patients. Communication breakdown is regularly listed among the top four stressors in measures of stress and burden of AD caregivers. A caregiver training program designed around seven specific communication strategies can be used to alter communication interactions. As a pilot program, the acronym FOCUSED organized the seven strategies for easy recall (Face-to-face, Orientation, Continuity, Unsticking, Structure, Exchanges, and Direct). Significant differences in both attitude toward AD patients, knowledge of AD, and knowledge of communication strategies were shown in comparisons of pre- and posttraining assessments. PMID:7999352
Macedo, Eliza Cristina; da Silva, Leila Rangel; Paiva, Mirian Santos; Ramos, Maria Natália Pereira
Abstract Objective: to identify and analyze the evidence available regarding evaluation of burden and quality of life of mothers who are caregivers for children and adolescents with chronic illnesses. Method: an integrative review, undertaken in the electronic sources MEDLINE; Academic Search Premier; CINAHL; LILACS; SciELO and PubMed, between 2010 and 2014. Results: among the 22 documents selected, there was a predominance of convenience samples and non-experimental transversal designs, at the levels IV and III2. The caregiver burden scales used were the Zarit Burden Interview and Montgomery-Borgatta Caregiver Burden Scale-Revised along with the following instruments for evaluating quality of life: The World Health Organization Quality of Life-BREF Scale; Self-report questionnaires; The Ulm Quality of Life Inventory for Parents of chronically ill children; Asthma Caregiver Quality of Life Questionnaire; and the Nottingham Health Profile. Quality-of-life appears to be influenced in a complex and interrelated way by the physical and mental health of the mothers who are caregivers, in accordance with their level of independence, social relationships, environment, and the extent to which they see themselves as burdened. Conclusion: the revealing of the results for the evaluation of burden and quality of life of mothers who are caregivers has implications for the planning and implementation of effective interventions, by the multidisciplinary team, if they are to relieve the burden. PMID:26444180
Bock, Meredith; Duong, Y-Nhy; Kim, Anthony; Allen, Isabel; Murphy, Jennifer; Lomen-Hoerth, Catherine
Our objective was to evaluate the association between cognitive-behavioral deficits and patient quality of life (QoL), caregiver burden, and disease stage in a population of patients with amyotrophic lateral sclerosis (ALS). We administered the ALS Cognitive-Behavioral Screen™ to 86 patients with ALS. Multiple regression was used to evaluate the association between cognitive or behavioral deficits and disease stage, patient QoL, and caregiver burden while controlling for clinically important variables. Of 86 participants enrolled, 53 (62%) had some degree of cognitive impairment, 32 (37%) were behaviorally impaired and four met both cognitive and behavioral screening criteria for frontotemporal dementia (FTD). The severity of cognitive-behavioral deficits was not associated with patient QoL. More pronounced cognitive deficits (beta = -1.4, p = 0.04) and behavioral symptoms (-0.69, p < 0.001) predicted higher caregiver burden. Self-reported QoL was lower in patients with more depressive symptoms (beta = -0.32, p < 0.001) and more advanced disease (beta =0.10, p = 0.01). In conclusion, general QoL for patients with ALS is not associated with cognitive or behavioral deficits. More severe cognitive deficits and caregiver-reported behavioral symptoms predict higher caregiver burden. Routine cognitive-behavioral screening can identify patients who require full neuropsychological examination, inform patient counseling, and identify caregivers in need of early, targeted interventions. PMID:27043386
Turner, Annie; Findlay, Leanne
Based on data from the 2008/2009 Canadian Community Health Survey-Healthy Aging, this study examines the characteristics of people aged 45 or older who reported caring for a senior. It also describes the nature of the care provided and the positive and negative aspects of caregiving. More than one-third (35%) of Canadians aged 45 or older reported caring for a senior with a short- or long-term health condition or limitation. Compared with non-caregivers, those providing care to a senior were more likely to be women. They tended to be younger and more likely to live in higher-income households and to be postsecondary graduates. More than half the people receiving care were parents or parents-in-law, and they usually did not live with the caregiver. The most common form of care provided was transportation. A third of caregivers had been providing assistance for at least five years. Virtually all (95%) of them reported positive aspects of caregiving, but more than half (56%) experienced challenges and difficulties. PMID:23061262
Chiriboga, David A.; Jang, Yuri; Molinari, Victor; Kim, Giyeon; Ko, Jung Eun
Health psychology has long been involved in studies of factors that lead to more effective caregiving. Drawing on the theory of distributive justice, the underlying hypothesis of this paper was that perceptions of what a demented parent was like, prior to becoming ill, influence an adult child caregiver's provision of care, as well as the caregiver's own well-being. A secondary question dealt with the nature of retrospective ratings by caregiver informants. The sample consisted of triads of two adult children (N = 385) and a parent (N = 201) diagnosed with Alzheimer's disease, although in a few instances only one adult child was interviewed. Both retrospective and current ratings of the parent were made by caregivers, who were administered a semantic differential instrument twice over a 10-month period. Comparison of ratings from first and second interview waves suggested that perceptions of what a parent was like, prior to the onset of dementia, were more stable over time than perceptions of what the parent was currently like, at each interview. Ratings of premorbid attributes were more strongly related to ratings of the present for those parents who displayed the least evidence of cognitive decline. Regression analyses supported the hypothesized relationship between adult children's perceptions and both provision of care and well-being variables. Results have implications for projections of caregiver burden and for placement into long-term care. PMID:25750833
Miranda, Darien; Favela, Jesus; Ibarra, Catalina; Cruz, Netzahualcoyotl
Caring for people with dementia imposes significant stress on family members and caregivers. Often, these informal caregivers have no coping strategy to deal with these behaviors. Anxiety and stress episodes are often triggered by problematic behaviors exhibited by the person who suffers from dementia. Detecting these behaviors could help them in dealing with them and reduce caregiver burden. However, work on anxiety detection using physiological signals has mostly been done under controlled conditions. In this paper we describe an experiment aimed at inducing anxiety among caregivers of people with dementia under naturalistic conditions. We report an experiment, using the naturalistic enactment technique, in which 10 subjects were asked to care for an older adult who acts as if she experiences dementia. We record physiological signals from the participants (GSR, HR, EEG) during the sessions that lasted for approximately 30 min. We explain how we obtained ground truth from self-report and observation data. We conducted two different tests using the Support Vector Machine technique. We obtained an average precision of 77.8 % and 38.1 % recall when classifying two different possible states: "Anxious" and "Not anxious". Analysis of the data provides evidence that the experiment elicits state anxiety and that it can be detected using wearable sensors. Furthermore, if episodes of problematic behaviors can also be detected, the recognition of anxiety in the caregiver can be improved, leading to the enactment of appropriate interventions to help caregivers cope with anxiety episodes. PMID:27443338
Evans, Bronwynne C.; Coon, David W.; Belyea, Michael J.
This mixed methods, multi-site, National Institute of Nursing Research (NINR)-funded, interdisciplinary, descriptive study aimed to identify expressions of worry in qualitative data obtained from caregiving Mexican American (MA) families assisting older adults. The purpose of this portion of the inquiry was to determine how worry is expressed, what happens to caregivers when they worry, and what adaptive strategies they used. We examined semi-structured interviews completed during six in-home visits with 116 caregivers. We identified 366 worry quotations from 639 primary documents in ATLAS.ti, entered them into matrices, and organized findings under thematic statements. Caregivers expressed cultural and contextual worries, worried about transitions and turning points in care, and identified adaptive strategies. Despite these strategies, worry persisted. Constant worry may be an allied, important aspect of caregiver burden. We need additional longitudinal research to better understand the experience of MA caregivers for older adults and to provide empirically supported interventions, programs, and services that reduce worry. PMID:27228120
Rote, Sunshine; Angel, Jacqueline L.; Markides, Kyriakos
Using newly available data on family caregivers from a large epidemiological study of elderly Mexican-origin adults (Hispanic Established Population for the Epidemiologic Study of the Elderly [HEPESE], 2010/2011), we identify which types of impairment (functional, psychological, and cognitive) in the elderly individual are associated with family caregiver depressive symptoms. Results from ordinary least squares regressions using 626 caregiver–care recipient dyads demonstrate that more severe mobility limitations (Performance-Oriented Mobility Assessment), social disability (instrumental activities of daily living), neuropsychiatric disturbances related to cognitive decline (Neuropsychiatric Inventory), and depressive symptoms in the elderly subject are positively associated with caregiver psychological distress. Perceived social stress partially accounts for these associations. We also identify certain segments of this caregiver population that are especially vulnerable to burden when caring for a family member with high levels of impairment, namely female and low-income caregivers. These vulnerabilities should be the focus of intervention efforts to reduce stress and improve the emotional and psychological well-being of Mexican-origin caregivers. PMID:25651573
Rhode Island State Dept. of Elderly Affairs, Providence.
This document presents a training manual to help caregivers who provide care to older family members and friends at home. The program, which offers a practical approach to caregiving and a realistic view of the aging process, is intended to clarify the problems confronting caregivers of older people, serve as a basic source manual for training…
Childhood epilepsy causes multiple stressors, difficulty in adjustment, and disruptions in family relations. This study sought to identify stressors of caregivers of school-age children and to assess whether use of community resources alleviates or contributes to caregiver stress. Stressors refer to concern about the child, communication with healthcare providers, changes in family relationships, interaction with school, and support within the community. A caregiver refers to the person who had looked after the child for the past 6-12 months. Support groups, religious or worship groups, counseling services, and traditional and spiritual faith healers were the community resources that were addressed. Face-to-face interviews were conducted on a convenience sample of 46 caregivers. A three-part structured interview schedule was used to describe demographic data, stressors of caregivers, and use of community resources. The top 6 stressors were the inability to get antiepileptic drugs, the deep pain or sadness caused by the child's seizures, caregiving (which was predominantly by mothers), limited help from the extended family, inadequate information on side effects of drugs, and inadequate information on seizures. The most commonly used community resource was religious or worship groups, with epilepsy support groups being least used. To alleviate caregiver stress, it is important that healthcare providers routinely assess the effect of seizures on caregivers and refer those requiring counseling, advocate for more male and extended family involvement in caregiving and provide adequate information on side effects of drugs and on seizures as standard practice. Nurses in developed countries should incorporate religious activities among complementary and alternative medicine interventions to reduce caregiver stress. Spiritual faith healers should be encouraged to refer clients with epilepsy for drug therapy and counseling. PMID:21796025
Girgis, Afaf; Lambert, Sylvie; Johnson, Claire; Waller, Amy; Currow, David
The aim of this article is to provide an overview of the issues faced by caregivers of people diagnosed with cancer, with a particular emphasis on the physical, psychosocial, and economic impact of caring. A review of the literature identified cancer as one of the most common health conditions in receipt of informal caregiving, with the majority of caregivers reporting taking on the role of caring because of family responsibility and there being little choice or no one else to provide the care. For some, caregiving can extend for several years and become equivalent to a full-time job, with significant consequent health, psychosocial, and financial burdens. Having a better understanding of the critical and broad roles that caregivers play in the oncology setting and the impact of these on their health and well-being may assist health care professionals in supporting caregivers with these tasks and targeting services and interventions toward those most in need. PMID:23942921
... you can take a break from your caregiving responsibilities to enjoy time alone or with friends. Visit ... respite, by allowing another individual to assume caregiving responsibilities for a limited period of time. It gives ...
... Communicator The family caregiver has many roles besides giving the patient hands-on care. Most people think ... caregiver becomes an advocate for the patient by giving this information to the health care team. Although ...
... Communicator The family caregiver has many roles besides giving the patient hands-on care. Most people think ... caregiver becomes an advocate for the patient by giving this information to the health care team. Although ...
Landfeldt, Erik; Lindgren, Peter; Bell, Christopher F.; Schmitt, Claude; Guglieri, Michela; Straub, Volker; Lochmüller, Hanns
Objective: The objective of this study was to estimate the total cost of illness and economic burden of Duchenne muscular dystrophy (DMD). Methods: Patients with DMD from Germany, Italy, United Kingdom, and United States were identified through Translational Research in Europe–Assessment & Treatment of Neuromuscular Diseases registries and invited to complete a questionnaire online together with a caregiver. Data on health care use, quality of life, work status, informal care, and household expenses were collected to estimate costs of DMD from the perspective of society and caregiver households. Results: A total of 770 patients (173 German, 122 Italian, 191 from the United Kingdom, and 284 from the United States) completed the questionnaire. Mean per-patient annual direct cost of illness was estimated at between $23,920 and $54,270 (2012 international dollars), 7 to 16 times higher than the mean per-capita health expenditure in these countries. Indirect and informal care costs were substantial, each constituting between 18% and 43% of total costs. The total societal burden was estimated at between $80,120 and $120,910 per patient and annum, and increased markedly with disease progression. The corresponding household burden was estimated at between $58,440 and $71,900. Conclusions: We show that DMD is associated with a substantial economic burden. Our results underscore the many different costs accompanying a rare condition such as DMD and the considerable economic burden carried by affected families. Our description of the previously unknown economic context of a rare disease serves as important intelligence input to health policy evaluations of intervention programs and novel therapies, financial support schemes for patients and their families, and the design of future cost studies. PMID:24991029
Hermanns, Melinda; Mastel-Smith, Beth
A common definition of caregiving does not exist. In an attempt to define the concept of caregiving, the authors used a hybrid qualitative model of concept development to analyze caregiving. The model consists of three phases: (a) theoretical, (b) fieldwork, and (c) analytical. The theoretical phase involves conducting an interdisciplinary…
Davis, Linda Lindsey; Chestnutt, Deborah; Molloy, Margory; Deshefy-Longhi, Tess; Shim, Bomin; Gilliss, Catherine L.
Although family home care problems are frequently described in the health care literature, the ways in which families and other informal caregivers manage those problems are not often addressed. We conducted a descriptive analysis of interviews in which spouses caring for a partner with Alzheimer’s or Parkinson’s disease were asked to describe difficult home care problems and how they managed those problems. Analysis of these interviews indicated three recurring management styles. Adapters told stories about applying pre-existing skills to manage home care problems. Strugglers told stories of reoccurring home care problems for which they had few or no management strategies. Case Managers’ interview stories focused on the challenges of finding and coordinating home care services. These findings suggest that caregiving burden might be influenced more by the caregiver’s management style than the demands of the care situation. Suggestions for tailoring support programs for the three types of caregivers are proposed. PMID:25189535
Drago, Robert; Colbeck, Carol; Stauffer, Kai Dawn; Pirretti, Amy; Burkum, Kurt; Fazioli, Jennifer; Lazarro, Gabriela; Habasevich, Tara
Faculty members rarely take advantage of family-friendly workplace policies. What are they so afraid of? Few eligible faculty members take formal leaves for childbearing or caregiving. The Faculty and Families Project at the author's university, for example, found that between 1992 and 1999, only four of 257 tenure-track faculty parents at…
(1) About 8,000 baby boomers reach age 65 every day. (2) Nearly 70 percent of people over age 65 will need some form of long-term services and supports in their lives. (3) AARP estimates the value of uncompensated care provided by family caregivers to be more than $450 billion annually. PMID:26173298
... of Family Caregiver Alliance. Blog What's New HOT Weather Tips We all suffer in hot weather. However, for elderly and disabled people and those ... conditions such as vascular disease or diabetes, the weather does not have to hit 100 degrees to ...
... fill up all your time. This will then increase your stress and reduce your ability to give good care. Pay attention to positive ... If you do, caregiving can wear you out, increase your stress, and interfere with your ability to give good care at home. Support groups ...
Ryall, T. G.; Moses, R. W.; Hopkins, M. A.; Henderson, D.; Zimcik, D. G.; Nitzsche, F.
High performance aircraft are, by their very nature, often required to undergo maneuvers involving high angles of attack. Under these conditions unsteady vortices emanating from the wing and the fuselage will impinge on the twin fins (required for directional stability) causing excessive buffet loads, in some circumstances, to be applied to the aircraft. These loads result in oscillatory stresses, which may cause significant amounts of fatigue damage. Active control is a possible solution to this important problem. A full-scale test was carried out on an F/A-18 fuselage and fins using piezoceramic actuators to control the vibrations. Buffet loads were simulated using very powerful electromagnetic shakers. The first phase of this test was concerned with the open loop system identification whereas the second stage involved implementing linear time invariant control laws. This paper looks at some of the problems encountered as well as the corresponding solutions and some results. It is expected that flight trials of a similar control system to alleviate buffet will occur as early as 2001.
Mutschler, P H
For many caregivers, rendering aid to frail parents, grandparents, siblings, and spouses comes at a high price: compromised physical and mental health, disturbed relationships with spouse and children, truncated opportunities for social life, and, for caregivers who are employed, declining job performance. Using the 1982 National Long Term Care Survey's "Survey of Informal Care-givers," this study investigates how the sociodemographic characteristics of caregivers, care requirements, the availability of backup caregivers, and conditions of employment affect the likelihood that caregivers will suffer work constraints. Estimations of both the probability of work constraints and hours of work reveal that proxies for work conditions figure prominently, as do care requirements. In the model of constrained work, ill health, financial burdens, and primary responsibility for care are significant determinants; the estimation of hours of work revealed that low income and competing care demands wielded major influence. Women and white caregivers are employed fewer hours, while spouses are more likely than other informal caregivers to face constrained work. Occupation, as an indicator of work conditions, is shown to be an important addition to the factors considered in investigations of circumstances that affect caregivers' experiencing work constraints. PMID:10186847
SCHULZ, RICHARD; ROSEN, JULES; KLINGER, JULIE; MUSA, DONALD; CASTLE, NICHOLAS G.; KANE, APRIL; LUSTIG, AMY
Many caregivers continue to provide care and support to their care recipients after institutional placement. A two-group randomized controlled trial was carried out to test the efficacy of a psychosocial intervention for informal caregivers whose care recipients resided in a long-term care facility. The intervention was delivered during the 6 month period following baseline assessment. Follow-up assessments were carried out at 6, 12, and 18 months. Primary outcomes were caregiver depression, anxiety, burden, and complicated grief. Significant time effects were found for all three primary outcomes showing that caregiver depression, anxiety, and burden improved over time. No treatment effects were found for these outcomes. However, complicated grief was significantly lower for caregivers in the treatment condition. PMID:25071302
Carlozzi, Noelle E.; Kratz, Anna L.; Sander, Angelle; Chiaravalloti, Nancy D.; Brickell, Tracey; Lange, Rael; Hahn, Elizabeth A.; Austin, Amy; Miner, Jennifer A.; Tulsky, David S.
Objective To identify aspects of health-related quality of life (HRQOL) that are relevant to caregivers of individuals with traumatic brain injury (TBI) and propose an integrated conceptual framework based on this information. Design Nine focus groups with caregivers of individuals with moderate-to-severe TBI were qualitatively analyzed to ascertain the effect that caring for an individual with a TBI has on caregiver HRQOL. Setting Focus groups were conducted at three rehabilitation centers across the United States (Michigan, New Jersey, and Texas). Participants 55 caregivers of individuals with moderate-to-severe TBI Interventions Not Applicable. Main Outcome Measures Not Applicable. Results Qualitative analysis indicated that caregivers were most concerned about their social health (42% of comments); other important issues were emotional health (34%), physical health (11%), cognitive health (3%), and feelings of loss (9%; feelings of loss related to changes in the future/potential of the care recipient or related to the caregiver). Areas of concern that were discussed that were specific to the caregiver and not fully evaluated by existing patient-reported outcomes (PROs) included feelings of loss, anxiety related to the caregiver role (reinjury concerns, worry about leaving the person alone, etc.), and caregiver strain (burden, stress, feeling overwhelmed, etc.). Conclusion Although existing PROs capture relevant aspects of HRQOL for caregivers, there are HRQOL domains that are not addressed. A validated and sensitive HRQOL tool for caregivers of individuals with TBI will facilitate initiatives to improve outcomes in this underserved group. PMID:25239281
Thai, Julie N; Barnhart, Caroline E; Cagle, John; Smith, Alexander K
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. PMID:25948041
Monin, Joan K.; Schulz, Richard; Lemay, Edward P.; Cook, Thomas B.
This study examined linguistic markers of emotion regulation and cardiovascular stress reactivity in spousal caregivers. Fifty-three individuals were audiotaped while they privately disclosed an instance of partner suffering and a typical partner interaction (i.e., a meal together). Systolic blood pressure, diastolic blood pressure, and heart rate (HR) were measured. Linguistic analysis determined emotion and cognitive processing word use. Results revealed that using more positive emotion words was associated with lower HR reactivity in each verbal account. Caregivers who used fewer cognitive processing words (e.g., think, realize, because) overall had the highest HR reactivity to talking about the partner’s suffering. These findings have implications for interventions for all caregivers as well as distinguishing more resilient caregivers from those who may be at a higher risk for caregiver burden. PMID:22369634
Sherwood, Paula R; Cwiklik, Maureen; Donovan, Heidi S
Vast research has underscored negative psychological and physical effects of providing care for someone with a chronic illness. Unfortunately, caregivers of persons with a primary malignant brain tumor have received very little attention in the research literature. The purpose of this article is to review what is known regarding descriptive and interventional work in neuro-oncology caregiving and to suggest avenues for future research. A total of 36 descriptive and six intervention studies were identified for this review. Increased distress in neuro-oncology caregivers has been linked to younger age; higher levels of economic burden and unmet needs; and lower levels of social support, spirituality and caregiver mastery. Intervention research suggests that educational programs and cognitive behavioral therapy may decrease neuro-oncology caregiver distress. PMID:26675885
Background Caregivers constitute an important informal workforce, often undervalued, facing challenges to maintain their caring role, health and wellbeing. Little is known about caregivers in middle-income countries like Thailand. This study investigates the physical and mental health of Thai adult caregivers. Methods This report derives from distance-learning students working and residing throughout Thailand and recruited for a health-risk transition study in 2005 (N=87,134) from Sukhothai Thammathirat Open University. The cohort follow-up questionnaire in 2009 (N = 60,569) includes questions on caregiver status which were not available in 2005; accordingly, this study is confined to analysis of the 2009 data. We report cross-sectional associations between caregiver status and health. Results Among the study participants in 2009, 27.5% reported being part-time caregivers and 6.6% reported being full-time caregivers. Compared to male non-caregivers, being a part-time or full-time male caregiver was associated with lower back pain (covariate-Adjusted Odds Ratios, AOR 1.36 and 1.67), with poor psychological health (AOR 1.16 and 1.68), but not with poor self-assessed health. Compared to female non-caregivers, being a part- or full-time female caregiver was associated with lower back pain (AOR 1.47 and 1.84), psychological distress (AOR 1.32 and 1.52), and poor self-assessed health (AOR 1.21 and 1.34). Conclusions Adult caregivers in Thailand experienced a consistent adverse physical and mental health burden. A dose–response effect was evident, with odds ratios higher for full-time caregivers than for part-time, and non-caregivers. Our findings should raise awareness of caregivers, their unmet needs, and support required in Thailand and other similar middle-income countries. PMID:23267664
Grover, Sandeep; Bhadada, Sanjay; Kate, Natasha; Sarkar, Siddharth; Bhansali, Anil; Avasthi, Ajit; Sharma, Sunil; Goel, Rashi
Aims: To assess the coping strategies and the relationship of coping with subjective burden and positive caregiving consequences as perceived by the caregivers of children and adolescents with Type-1 diabetes. Design: Cross-sectional assessment. Setting: Outpatient of Endocrinology Department. Participants: Forty-one parents of children and adolescents with Type-1 diabetes Main Outcome Measure: Ways of coping checklist (WCC), involvement evaluation questionnaire (IEQ) and scale for assessment of positive aspects of caregiving experience (scale for positive aspects of caregiving experience) to study the coping, burden and positive aspects of caregiving respectively. Results: On WCC, the highest score was obtained for seeking social support, followed by planful problem-solving. More frequent use of coping strategies of confrontation and escape-avoidance was associated with significantly higher score on the tension domain of IEQ. Those who more frequently used problem-solving and distancing had significantly higher scores on worrying-urging-I domain of IEQ. supervision domain of IEQ was associated with more frequent use of confrontation, self-control, social support, escape-avoidance and positive reappraisal. More frequent use of distancing and problem-solving were associated with lower caregiving personal gains. More frequent use of problem-solving was associated with higher caregiver satisfaction and lower scores in the domain of self-esteem and social aspects of caring. Conclusion: Caregivers of patients with Type-1 diabetes predominantly use adaptive coping strategies. Higher use of certain coping strategies is associated with negative and positive caregiving consequences. PMID:26955574
Nathan, Robert A
Although formerly regarded as a nuisance disease, allergic rhinitis (AR) has a considerable effect on quality of life and can have significant consequences if left untreated. The total burden of this disease lies not only in impaired physical and social functioning but also in a financial burden made greater when considering evidence that AR is a possible causal factor in comorbid diseases such as asthma or sinusitis. Compared with matched controls, patients with AR have an approximate twofold increase in medication costs and 1.8-fold the number of visits to health practitioners. Hidden direct costs include the treatment of comorbid asthma, chronic sinusitis, otitis media, upper respiratory infection, and nasal polyposis. Nasal congestion, the most prominent symptom in AR, is associated with sleep-disordered breathing, a condition that can have a profound effect on mental health, including increased psychiatric disorders, depression, anxiety, and alcohol abuse. Furthermore, sleep-disordered breathing in childhood and adolescence is associated with increased disorders of learning performance, behavior, and attention. In the United States, AR results in 3.5 million lost workdays and 2 million lost schooldays annually. Patients struggle to alleviate their misery, frequently self-adjusting their treatment regimen of over-the-counter and prescription medications because of lack of efficacy, deterioration of efficacy, lack of 24-hour relief, and bothersome side effects. Ironically, health care providers overestimate patient satisfaction with therapy. Therefore, improvement in patient-practitioner communication may enhance patient adherence with prescribed regimens. PMID:17390749
Sischo, Lacey; Broder, Hillary L.; Phillips, Ceib
Objective To present a conceptual framework of caregiver coping and adaptation to early cleft care using nasoalveolar molding. Design In-depth interviews were conducted at three time points with caregivers of infants with cleft lip or cleft lip and palate whose children had nasoalveolar molding to treat their cleft. Qualitative data were analyzed using modified grounded theory. Results Most caregivers expressed initial apprehension and anxiety about the responsibilities of care associated with nasoalveolar molding (e.g., changing and positioning tapes, cleaning the appliance). In subsequent interviews, caregivers often reported positive feelings related to their active participation in their child’s treatment for cleft. These positive feelings were associated with increased self-esteem and feelings of empowerment for the caregivers. Although caregivers also identified burdens associated with nasoalveolar molding (e.g., stress related to lip taping, concerns about the appliance causing sores in their child’s mouth, travel to weekly appointments), they tended to minimize the impact of these issues in comparison with the perceived benefits of nasoalveolar molding. Conclusions Despite the increased burden of care, many caregivers of infants with cleft used nasoalveolar molding as a problem-focused coping strategy to deal with their child’s cleft. Completing nasoalveolar molding was often associated with positive factors such as increased empowerment, self-esteem, and bonding with their infant. PMID:25225840
Tseng, Chien-Ning; Huang, Guey-Shiun; Yu, Po-Jui; Lou, Meei-Fang
Background Incontinence is a common problem faced by family caregivers that is recognized as a major burden and predictor of institutionalization. However, few studies have evaluated the experiences of family caregivers caring for stroke survivors with incontinence. Purpose To describe experiences of caregivers managing incontinence in stroke survivors. Design This qualitative descriptive study employed a grounded-theory approach. Methods Semi-structured in-depth interviews with ten family caregivers of stroke survivors with incontinence were conducted during 2011. Audiotaped interviews were transcribed and analyzed using content analysis. Findings Data analysis identified four themes: chaos, hypervigilance, exhaustion, and creating a new life. There were nine related subcategories: fluster, dirtiness, urgency, fear of potential health-hazard, physically demanding and time-consuming, mentally draining, financial burden, learning by doing, and attitude adjustment. Together, these described a process of struggling to cope with the care of stroke survivors with urinary/fecal incontinence. Of the four categories, “creating a new life” developed gradually over time to orient caregivers to their new life, while the other three categories occurred in a chronological order. Conclusion The research highlighted unique caring experiences of family caregivers of stroke patients, which focused solely on the ‘incontinence issue’. Understanding these experiences may help nurses provide better support and resources for family caregivers when caring for stroke survivors with incontinence. PMID:26066345
Banaszkiewicz, Krzysztof; Sitek, Emilia J; Rudzińska, Monika; Sołtan, Witold; Sławek, Jarosław; Szczudlik, Andrzej
The aim of this study was to identify determinants of functional disability, patient's quality of life (QoL) and caregivers' burden in Huntington's disease (HD). Eighty HD patients participated in the study. Motor and behavioral disturbances as well as cognitive impairment were assessed using motor, behavioral and cognitive parts of the Unified Huntington Disease Rating Scale (UHDRS); Hamilton Depression Rating Scale was used to assess depression. Disability, health-related QoL and the impact of the disease on the caregivers were assessed using the following methods: UHDRS Functional Assessment Score, SF-36 Scale and Caregiver Burden Inventory. Multiple regression analysis showed that motor disturbances, cognitive impairment, apathy and disease duration were the independent predictors of disability. Depression and cognitive disturbances were the determinants of patient's QoL, while motor disturbances and depression were the predictors of the caregiver burden. Patient's disability and QoL as well as caregivers' burden should be taken into consideration while planning treatment strategy and the results of the present study show that the predictors of those treatment targets are different. PMID:22398875
Alshubaili, Asmahan F; Ohaeri, Jude U; Awadalla, Abdel W; Mabrouk, Asser A
Background Research interest in the quality of life (QOL) of persons with multiple sclerosis (MS) has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables. Methods Consecutive MS clinic attendees were assessed with the 26 – item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness. Results The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P < 0.01), but higher QOL than the patients. When the scores were corrected for patients' depression and disability, caregivers had similar QOL with the general population group for four domains. Using corrected scores, MS caregivers had lower scores than diabetic and psychiatric caregivers in the physical, psychological and social relations domains. Majority expressed negative attitudes to MS. Caregiver QOL was more affected by their fear of having MS than their feelings about the illness and caregiving role. Caregiver attitudes had mostly no significant impact on their proxy ratings of patients' QOL. The significant predictor of caregivers' overall QOL was their impression of patients' QOL. Conclusion Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of
Klemm, Paula R; Hayes, Evelyn R; Diefenbeck, Cynthia A; Milcarek, Barry
The overall objectives of this project were to evaluate whether psychosocial outcomes in employed family caregivers of people with chronic disease, who participate in online support, differ from nonactive participants and whether psychosocial outcomes differ based on the format of online group support. A randomized longitudinal design comparing two types of online support groups and nonactive participants, on the basis of three principal measures, was utilized. Eighty-six self-reported family caregivers of people with chronic disease, who spoke English and had Internet access, took part in the study. Subjects were randomly assigned to professionally facilitated/psychoeducational or moderated/peer-directed online support groups for a period of 12 weeks. The setting was a password-protected Web page housed on a university server. Independent variables were type of online support groups and level of participation; the dependent variables were depressive symptoms, caregiver burden, and caregiver quality of life. There were significant differences in depressive symptoms and quality of life among nonactive participants and either of the two intervention groups, but not between the two intervention groups. Results suggest that professionally facilitated/psychoeducational and moderated/peer-directed online support groups help reduce depressive symptoms and improve quality of life for those who actively participate and that both types of online support groups provided similar benefits. Men and minorities should be targeted in future caregiver research. PMID:24284908
Background 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. Methods/design Design: 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). Study area: Primary Health Care network (9 PHCTs). Study participants: Primary informal caregivers of patients receiving home health care from participating PHCTs. Sample: Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. Intervention: 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. Control: Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request. Data analysis Dependent variables: Caregiver burden (short-form Zarit test), caregivers’ social support (Medical Outcomes Study), and
Wharewera-Mika, Julie; Cooper, Erana; Kool, Bridget; Pereira, Susana; Kelly, Patrick
Head injury is a leading cause of mortality and acquired neurological impairment in children. Head-injured children may have neurobehavioural deficits that persist for years following injury. Head injury can result in significant and persistent caregiver burden, including mental health issues, family stress and disorganisation, and unmet social and healthcare service needs. Few studies have examined the healthcare and social service needs of children and their families following head injury sustained at an early age. This qualitative study aims to describe the experiences of caregivers of children who sustained a serious head injury (particularly non-accidental head injury) before the age of 2 years. Caregivers were interviewed up to 15 years following the initial injury. Semi-structured interviews with 21 caregivers of 15 children (aged 3-15 years at the time of interview) were completed. Thematic analysis of interview data generated three key themes: impact, support and information. The study's findings reveal the broad impact of serious childhood head injury on caregivers, specifically the significant distress and burden brought about through lack of information, challenges in accessing support and inconsistent care. Recommendations for developing a quality 'model of care' and improving ease of access to supports for caregivers are provided. PMID:26088208
Schneider, Monica; Steele, Rose; Cadell, Susan; Hemsworth, David
This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a) determine if there were gender differences and (b) identify gender-specific correlations among these outcomes. Findings suggest that significant gender differences exist. Women reported higher average scores compared with men for meaning in caregiving, depression, burden, and posttraumatic growth and lower average scores for optimism. Correlations also revealed some significant differences. Health care professionals need to be aware of gender differences and tailor their interventions appropriately. PMID:21601142
This research reviewed studies that investigated factors influencing the caregiving experience among informal Hispanic caregivers of dementia patients. This review identified 24 journal articles published between 1985 and 2003. Variables studied were depression and social support. In addition, methodological issues were detected such as sampling bias and multiple measurements. This review concluded that there is a need for an extensive, in depth research of the caregiving experience among Hispanics and further research needs are discussed. PMID:19172968
Mast, Merle E
Many family caregivers of frail older adults postpone or decline accessible and affordable services such as respite, despite their acknowledgement of unmet needs for support and time away from the burdens and stress of caregiving. How caregivers perceive their need for services, and the factors that influence their decisions to use or not to use services, remain poorly understood. This article reviews the literature on family caregiving and the complex interrelated factors that influence caregivers' choices regarding support services. It organizes these factors into four areas: (a) service characteristics, (b) personal predisposing factors that affect perceived need, (c) experiential coping and decision-making patterns, and (d) relational factors. It also examines the implications of this evidence for nursing assessments and interventions with frail older adults and their family caregivers. PMID:23413449
Background Carer burden is high during First Episode Psychosis (FEP) and evidence suggests that this is a predictor of poor long-term outcome. However our understanding of factors associated with higher burden is poor. We propose that carers’ cultural backgrounds and health belief models will influence their perceived burden of care, over and above that explained by severity of illness. Methods Patients with FEP and their primary Carers were recruited from the Early Intervention Service. Patients and Carers completed a range of validated measures, self-report ethnicity and demographic information together with the Multidimensional Health Locus of Control and Caregiver Burden Inventory. Results Significant correlations were found between carer burden and health beliefs, which differed by ethnicity and gender. High physical burden was experienced by Black carers with an external locus of control; time restrictions and emotional burden correlated with an external locus of control in Asian carers. For White carers, external locus of control correlated with time dependence burden. In all ethnic groups female carers experienced more time dependency, physical and developmental burden. No significant correlations were found between patient measures of severity or duration of illness and carer burden. Conclusions The type of burden experienced by carers differed between gender and ethnicity and was related to their health belief models. Thus the explanation and understanding of illness appears to be more salient than simply a patient’s severity of illness when considering the development of carer burden. Interventions to tackle high carer burden, and thus expressed emotion to improve outcome in patients, may need increasing focus here. PMID:24913656
Vroman, Kerryellen; Morency, Jamme
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 navigating…
Gravem, Dana; Lakes, Kimberley; Rich, Julia; Hayes, Gillian; Cooper, Dan; Olshansky, Ellen
feeling “scared” of hurting their babies during the first few days of home exercise, but stated that fears were alleviated by practice in the home and further teaching and learning. Clinical Implications Caregivers were willing and able to do the exercises correctly, and they expressed a belief that the intervention had positive effects on their babies and on caregiver-infant interactions. These findings have important implications for nursing practice because nurses are in key positions to teach and encourage caregivers to practice these exercises with their newborn babies. PMID:23618941
Chew, Justin; Chong, Mei-Sian; Fong, Yoke-Leng; Tay, Laura
Background Nonpharmacological interventions such as exercise and cognitive rehabilitation programs have shown promise in reducing the impact of dementia on the individual and the caregiver. In this study, we examine the effect of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers using conventional measures of cognition, behavior, quality of life (QoL), and caregiver burden together with goal attainment scaling (GAS), an individualized outcome measure. Methods Goals were set at baseline, and GAS score was calculated at the end of the program. Participants were also assessed with the Chinese Mini-Mental State Examination, functional and behavioral scales (Barthel Index), Instrumental Activities of Daily Living, Neuropsychiatric Inventory Questionnaire, QoL, and caregiver burden using EuroQol-five dimension questionnaire and Zarit Burden Interview (ZBI). Differences in median scores postintervention were obtained. Further analysis of caregiver burden was undertaken utilizing the multidimensional classification of burden on the ZBI. Results Thirty-four (61.8%) patients were assessed to have met their goals (GAS score≥50). Mean (standard deviation) GAS score was 48.6 (6.5). Cognition goals were set in only 20.6%, followed by goals to improve engagement and socialization; reduce caregiver stress; and improve physical function, behavior, and mood. Median scores in the cognitive, functional, and QoL measures did not differ significantly pre- and postintervention. The intervention had a positive impact on role strain, a unique dimension of caregiver burden. Conclusion This study provides evidence that a multimodal approach combining physical exercise and cognitive rehabilitation improves goal attainment and caregiver burden in individuals and caregivers of persons with mild dementia. PMID:26543358
Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara
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
Robinson, Carole A; Bottorff, Joan L; Pesut, Barbara; Oliffe, John L; Tomlinson, Jamie
The purpose of this scoping review was to examine the empirical evidence published since 2007 on men as family caregivers of persons with dementia. Searches were conducted on Academic Search Complete, Ageline, CINAHL, Embase, Medline, PsychINFO, Social Work Abstracts, and Web of Science using database-specific controlled (i.e., MeSH terms) vocabulary related to dementia, men, and caregiving. Studies published in English between 2007 and 2012 that provided evidence of the experiences of male family caregivers of persons with dementia were included in the review. A total of 30 articles were selected for inclusion. Studies were grouped into three major themes for review: men's experiences of caregiving, relational factors, and outcomes of caregiving. The reviewed studies build on and support previous findings related to stress, burden, accessing services, and the importance of relational factors to men's caregiving experiences. However, there is a need for a framework that explains these findings in relation to masculinities. Such a framework would provide the necessary unifying context for a more powerful explanatory account. Furthermore, there appears to be the potential for great benefit in fully linking men's caregiver research to men's health issues as a means to articulate strategies to sustain the health and well-being of men caregivers. This seems especially relevant in light of the closing gender gap in life expectancy, which will ultimately see many men providing direct care to their partners. PMID:24414033
Ho, Lap; Bloom, Patricia A; Vega, Joan G; Yemul, Shrishailam; Zhao, Wei; Ward, Libby; Savage, Evan; Rooney, Robert; Patel, Divyen H; Pasinetti, Giulio Maria
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. PMID:26984114
Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara
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
... to the aging family member. Talk about caregiving responsibilities First, try to define the caregiving responsibilities. You ... suited to your skills or interests. Splitting caregiving responsibilities—consider your strengths When thinking about who should ...
Purpose: 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. Design and Methods: 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. Results: 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. Implications: 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. PMID:22961466
Kahn, William A.
Offers a system-level perspective on job burnout among human service workers, focusing on their internal networks of caregiving relationships. Defines and illustrates five recurring caregiving patterns characterizing agency members' relationships, ranging from supervisor support to mutual withdrawal between supervisors and subordinates. Discusses…
Schulz, Richard; Czaja, Sara J.; Lustig, Amy; Zdaniuk, Bozena; Martire, Lynn M.; Perdomo, Dolores
Objective To assess the efficacy of two psychosocial interventions for caregivers of older persons with spinal cord injury (SCI). Design A multisite, three-group, randomized controlled trial comparing two active intervention conditions with each other and to an information-only control group. One hundred seventy-three caregiver and care-recipient dyads were randomly assigned to one of three conditions: a caregiver-only treatment condition in which caregivers received a multicomponent intervention based on their risk profile; a dual-target condition in which the caregiver intervention was complemented by a treatment targeting the care recipient, designed to address both caregiver and care recipient risk factors; and an information-only control condition in which the caregiver received standard printed information about caregiving, SCI, and aging. Outcome Measures A multivariate outcome comprised of six indicators linked to the goals of the interventions was the primary outcome of the study. The multivariate outcome included measures of depressive symptoms, burden, social support and integration, self-care problems, and physical health symptoms. Results At 12 months, caregivers in the dual-target condition had improved quality of life as measured by our multivariate outcome when compared to the control condition. Using the dyad as the unit of analysis, the dual-target condition was superior to both the control condition and the caregiver-only condition in our multivariate outcomes analysis. Dyads enrolled in the dual-target condition had significantly fewer health symptoms than control condition and caregiver-only condition participants and were less depressed when compared to participants in the caregiver-only condition. In follow-up analyses we found that a higher proportion of caregivers in the dual-target condition had clinically significant improvements in depression, burden, and health symptoms when compared with the caregiver-only condition. Conclusion
Tong, Allison; Palmer, Suetonia; Manns, Braden; Craig, Jonathan C; Ruospo, Marinella; Gargano, Letizia; Johnson, David W; Hegbrant, Jörgen; Olsson, Måns; Fishbane, Steven; Strippoli, Giovanni F M
Objectives To explore the beliefs and expectations of patients and their caregivers about home haemodialysis in Italy where the prevalence of home haemodialysis is low. Design Semistructured, qualitative interview study with purposive sampling and thematic analysis. Setting Four dialysis centres in Italy without home haemodialysis services (Bari, Marsala, Nissoria and Taranto). Participants 22 patients receiving in-centre haemodialysis and 20 of their identified caregivers. Results We identified seven major themes that were central to patient and caregiver perceptions of home haemodialysis in regions without established services. Three positive themes were: flexibility and freedom (increased autonomy, minimised wasted time, liberation from strict dialysis schedules and gaining self-worth); comfort in familiar surroundings (family presence and support, avoiding the need for dialysis in hospital) and altruistic motivation to do home haemodialysis as an exemplar for other patients and families. Four negative themes were: disrupting sense of normality; family burden (an onerous responsibility, caregiver uncertainty and panic and visually confronting); housing constraints; healthcare by ‘professionals’ not ‘amateurs’ (relinquishing security and satisfaction with in-centre services) and isolation from peer support. Conclusions Patients without direct experience or previous education about home haemodialysis and their caregivers recognise the autonomy of home haemodialysis but are very concerned about the potential burden and personal sacrifice home haemodialysis will impose on caregivers and feel apprehensive about accepting the medical responsibilities of dialysis. To promote acceptance and uptake of home haemodialysis among patients and caregivers who have no experience of home dialysis, effective strategies are needed that provide information about home haemodialysis to patients and their caregivers, assure access to caregiver respite, provide continuous
Martín-García, Raquel; Martín-Avila, Guillermo; la Rubia-Marcos, María De; Maroto-Rodríguez, Raquel; Ortega-Angulo, Celia; Carreras Rodriguez, María Teresa; Abad Santos, Francisco; Gago Veiga, Ana Beatriz
Background Dementia is a neurodegenerative disease whose prevalence is rising, and the need for assistance to patients becomes indispensable. The different types of dementia and their treatments have been widely studied; however, the health status of caregivers also requires our attention. Objective The aim of our research was to evaluate whether caregivers of patients with dementia consume more medications than the general population, indicating underlying pathologies. Methods A total of 91 caregivers of dementia patients were interviewed and their answers were compared with those from a control group of 48 people, taking into account demographic data, characteristics of patients and caregivers, pharmacological and nonpharmacological treatments and burden. Results Caregivers showed a significantly higher consumption of anxiolytics, antidepressants and antiplatelets (22.3, 13.2 and 11%, respectively) than the control group (14.6, 0 and 0%, respectively). Moreover, 45.1% of the caregivers used nonpharmacological therapies compared with 6.2% of the control group. There was a tendency to take more medications in those caregivers suffering from burden and those who had to take care of patients with behavioral changes. Conclusion Caregivers of dementia patients need more pharmacological and nonpharmacological therapies. They are a risk group that needs better care from the health system. PMID:27065471
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Nelson, Dean R.
The purpose of the study was to investigate if the emotional availability of caregivers is explanatory for successful adolescent foster care placement--from initial placement of an adolescent to age eighteen or emancipation from foster care, as mandated by the state of Colorado. Emotional availability of foster caregivers and the phenomenon's…
Describes the role caregivers play in helping young children dealing with obesity. Examines: (1) causes of childhood obesity; (2) caregiver's position; (3) learning nutrition concepts; (4) preparing and serving healthy foods; (5) encouraging physical activity; (6) working with parents; and (7) assisting an obese child. (SD)
Watermeyer, Tamlyn J; Brown, Richard G; Sidle, Katie C L; Oliver, David J; Allen, Christopher; Karlsson, Joanna; Ellis, Cathy; Shaw, Christopher E; Al-Chalabi, Ammar; Goldstein, Laura H
Up to 50% of patients with amyotrophic lateral sclerosis (ALS) show mild to moderate cognitive-behavioural change alongside their progressive functional impairment. This study examines the relative impact of patients' disease symptoms, behavioural change and current executive function and social cognition abilities on psychosocial outcomes in spouse caregivers of people with ALS. Thirty-five spouse caregivers rated their own levels of depression and anxiety, subjective burden and marital satisfaction. Caregivers also rated their partner's everyday behaviour. The patients were assessed for disease severity and cognitive function, with composite scores derived for executive function and social cognition. Regression analyses revealed that caregiver burden was predicted by the severity of patients' limb involvement and behavioural problems. Depression was predicted by patients' limb involvement, while behavioural problems and patient age predicted caregiver anxiety. Current marital satisfaction was predicted by patient behavioural problems beyond the level of pre-illness marital satisfaction. In conclusion, the study highlights the potential impact of ALS patients' functional impairment and behavioural change on ALS caregivers' psychosocial functioning. Clinical communication with ALS families should emphasise both physical and psychological challenges presented by the disease. PMID:26199108
Stone, Roslyn A.; Kim, Kevin H.; Ren, Dianxu; Schulz, Richard; Given, Charles W.; Given, Barbara A.; Sherwood, Paula R.
Background Competing theories of adaptation and wear-and-tear describe psychological distress patterns among family caregivers. Purpose This study seeks to characterize psychological distress patterns in family caregivers and identify predictors. Methods One hundred three caregivers of care recipients with primary malignant brain tumors were interviewed within 1, 4, 8, and 12 months post-diagnosis regarding psychological distress; care recipients were interviewed regarding clinical/functional characteristics. Group-based trajectory modeling identified longitudinal distress patterns, and weighted logistic/multinomial regression models identified predictors of distress trajectories. Results Group-based trajectory modeling identified high-decreasing (51.1 % of caregivers) and consistently low (48.9 %) depressive symptom trajectories, high-decreasing (75.5 %) and low-decreasing (24.5 %) anxiety trajectories, and high (37.5 %), moderate (40.9 %), and low-decreasing (21.6 %) caregiver burden trajectories. High depressive symptoms were associated with high trajectories for both anxiety and burden, lower caregivers age, income, and social support, and lower care recipient functioning. Conclusions Our data support the adaptation hypothesis; interventions should target those at risk for persistent distress. PMID:22585179
Goetzinger, Amy M; Blumenthal, James A; O'Hayer, C Virginia; Babyak, Michael A; Hoffman, Benson M; Ong, Lephuong; Davis, R Duane; Smith, Stephen R; Rogers, Joseph G; Milano, Carmelo A; Smith, Alastair D; Kuo, Paul C; Palmer, Scott M
Caregivers for patients undergoing solid organ transplantation play an essential role in the process of transplantation. However, little is known about stress and coping among these caregivers. Six hundred and twenty-one primary caregivers of potential candidates for lung (n = 317), liver (n = 147), heart (n = 115), and/or kidney (n = 42) transplantation completed a psychometric test battery at the time of the candidate's initial pre-transplant psychosocial evaluation. Caregivers were generally well adjusted, with only 17% exhibiting clinical symptoms of depression (Beck Depression Inventory-II score >13) and 13% reporting clinical levels of anxiety (State Trait Anxiety Inventory score >48). Greater caregiver burden and negative coping styles were associated with higher levels of depression. Greater objective burden and avoidant coping were associated with higher levels of anxiety. Caregivers evidenced a high degree of socially desirable (i.e., defensive) responding, which may reflect a deliberate effort to minimize fears or worries so as to not jeopardize patients' listing status. PMID:21395692
Lambert, Sylvie D.; Yoon, Hyojin; Ellis, Katrina R.; Northouse, Laurel
Objective Examine the psychometric properties of the Appraisal of Caregiving Scale (ACS). Methods Data were collected as part of the FOCUS Program trial in Michigan (N = 484 caregivers). Results Exploratory factor analysis found the ACS measured Threat, General Stress, and Benefit appraisals. Cronbach’s alphas for all subscales exceeded 0.70. Construct validity analyses indicated the Threat subscale correlated significantly with concepts of avoidant coping, burden, and dyadic support (r > 0.30). General Stress correlated significantly with burden (r = 0.348) and dyadic support (r = −0.373), and the Benefit subscale correlated significantly with active coping (r = 0.444). Known group analyses indicated that depressed caregivers had higher Threat and General Stress scores than non-depressed caregivers. Also, younger caregivers reported significantly higher scores on the General Stress subscale than older caregivers. Predictive validity analyses found appraisal scores at baseline accounted for 33.3% of the variance in hopelessness and 27.8% of the variance in depression at Time 2. Conclusion and practice implications The ACS is a reliable measure of Threat, General Stress, and Benefit appraisals, with some support for its validity. Health professionals may find the ACS useful for guiding intervention development. Future research should continue to examine the ACS’ validity. PMID:25648280
Background Caregivers of relatives with Alzheimer’s disease are highly stressed and at risk for physical and psychiatric conditions. Interventions are usually focused on providing caregivers with knowledge of dementia, skills, and/or support, to help them cope with the stress. This model, though true to a certain extent, ignores how caregiver stress is construed in the first place. Besides burden, caregivers also report rewards, uplifts, and gains, such as a sense of purpose and personal growth. Finding benefits through positive reappraisal may offset the effect of caregiving on caregiver outcomes. Design Two randomized controlled trials are planned. They are essentially the same except that Trial 1 is a cluster trial (that is, randomization based on groups of participants) whereas in Trial 2, randomization is based on individuals. Participants are randomized into three groups - benefit finding, psychoeducation, and simplified psychoeducation. Participants in each group receive a total of approximately 12 hours of training either in group or individually at home. Booster sessions are provided at around 14 months after the initial treatment. The primary outcomes are caregiver stress (subjective burden, role overload, and cortisol), perceived benefits, subjective health, psychological well-being, and depression. The secondary outcomes are caregiver coping, and behavioral problems and functional impairment of the care-recipient. Outcome measures are obtained at baseline, post-treatment (2 months), and 6, 12, 18 and 30 months. Discussion The emphasis on benefits, rather than losses and difficulties, provides a new dimension to the way interventions for caregivers can be conceptualized and delivered. By focusing on the positive, caregivers may be empowered to sustain caregiving efforts in the long term despite the day-to-day challenges. The two parallel trials will provide an assessment of whether the effectiveness of the intervention depends on the mode of
MacNeil, Gordon; Kosberg, Jordan I.; Durkin, Daniel W.; Dooley, W. Keith; DeCoster, Jamie; Williamson, Gail M.
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…
Andruccioli, Jessica; Russo, Maria Maffia; Bruschi, Angela; Pedrabissi, Luigi; Sarti, Donatella; Monterubbianesi, Maria Cristina; Rossi, Sabina; Rocconi, Sabina; Raffaeli, William
In this study we report the results of construction and administration of a semi-structured interview for the evaluation of caregivers in hospice. The results presented here are related to interviews (n = 25) that were administered at Rimini Hospice. According to the interview coding system, it was possible to identify thematic areas of the interviews where the caregiver's distress was mainly concentrated. As concerning the care burden, greater distress was detected in areas relating to the change in the rhythm of life (38%) and in social network (26%); whereas, as concerning the psychological burden, a greater distress was detected in the area related to the caregiver role (51%). In conclusion, a singular element identified as a source of distress in, our study, is that of social network. PMID:21190946
APPLEBAUM, ALLISON J.; BREITBART, WILLIAM
Objective Informal caregivers (ICs) are relatives, friends, and partners who have a significant relationship with and provide assistance (i.e., physical, emotional) to a patient with a life-threatening, incurable illness. The multidimensional burden that results from providing care to a patient with cancer is well documented, and as a result, a growing number of psychosocial interventions have been developed specifically to address this burden. The purpose of the present study was to characterize the state of the science of psychosocial interventions for informal cancer caregivers. Method A comprehensive systematic review of interventions for cancer caregivers was conducted via an electronic literature search of publications between 1980 and January 13, 2011. A final sample of 49 interventions was reviewed in detail. Results The interventions, which varied in terms of modality and patient population, fell into the following eight categories: psychoeducation, problem-solving/skills building interventions, supportive therapy, family/couples therapy, cognitive-behavioral therapy, interpersonal therapy, complementary and alternative medicine interventions, and existential therapy. Benefits and disadvantages of each of the categories are discussed, with special attention given to studies that produced null findings. Significance of results Beyond specific techniques, structured, goal-oriented, and time-limited interventions that are integrative appear to be the most feasible and offer the greatest benefits for ICs of cancer patients. Future studies are needed to examine the specific benefits and challenges of delivering interventions in alternative modalities (Internet, Skype) so that the needs of a greater number of ICs may be addressed. PMID:23046977
Ten Elshof, Annette; Tomlinson, Elaine
Describes a workshop designed to help women administrators assess individual stress levels. Stress can be alleviated through exercise, support groups or networking, sleep and diet, relaxation, guided fantasy, and planned activity. The long-term implications include preventing illness and making women more effective within the administrative…
McCann, Terence V; Lubman, Dan I; Clark, Eileen
Becoming a career is associated with physical, emotional, and financial hardship, with caregivers often experiencing a maelstrom of emotions as they struggle to understand what has happened to their loved one. While the burden of caring for young people with first-episode psychosis (FEP) has been well documented, much less is known about how carers develop the strength and resilience to continue caring. This qualitative study aimed to understand the experience of 20 first-time primary caregivers of young adults with FEP. Most caregivers were female (85%, n = 17) and parents (85%, n = 17). The average length of involvement as a caregiver at an FEP service was 14.5 months. Six main themes were identified in the data, highlighting the carers' experience in supporting young adults with FEP. Caregiving is a burdensome responsibility and is characterized as a roller coaster and unpredictable experience. Caregivers often feel responsible for the young person's illness; however, eventually most come to terms with the changes that have occurred in the young person with FEP. As a consequence of the illness, the relationship between caregiver and care recipient frequently becomes closer and deeper, although it is important that they both maintain hope for the future. These findings provide important insights into the experiences of first-time caregivers of young people with FEP, with direct implications for improving the information and support given to caregivers by FEP services, as well as the development of interventions that effectively address the unique challenges caregivers face following the onset of FEP. PMID:19679716
Yıkılkan, Hülya; Aypak, Cenk; Görpelioğlu, Süleyman
Family caregivers of patient in long-term care facilities often have high rates of stress, burden and psychological illness. A descriptive study was carried out with 63 caregivers. Caregivers were asked to complete a demographic questionnaire, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) and Short form 36 (SF-36), which measures health related quality of life (QoL). The majority of caregivers were female (79.4%), and most often the daughter of the patient in long-term care (47.6%). The mean BDI score of the sample was 18.8, and the mean BAI score was 20.0. Almost all the mean scores referring to the QoL were decreased (lower than 50), with the exception of mental health. On the SF-36 questionnaire, the lowest scores were observed on the role-emotional, role-physical, social functioning and vitality scales of the SF-36. PMID:24856272
Meichsner, Franziska; Schinköthe, Denise; Wilz, Gabriele
Dementia caregivers often experience loss and grief related to general caregiver burden, physical, and mental health problems. Through qualitative content analysis, this study analyzed intervention strategies applied by therapists in a randomized-controlled trial in Germany to assist caregivers in managing losses and associated emotions. Sequences from 61 therapy sessions that included interventions targeting grief, loss, and change were transcribed and analyzed. A category system was developed deductively, and the intercoder reliability was satisfactory. The identified grief intervention strategies were recognition and acceptance of loss and change,addressing future losses,normalization of grief, and redefinition of the relationship Therapists focused on identifying experienced losses, managing associated feelings, and fostering acceptance of these losses. A variety of cognitive-behavioral therapy-based techniques was applied with each strategy. The findings contribute to understanding how dementia caregivers can be supported in their experience of grief and facilitate the development of a manualized grief intervention. PMID:26311735
Caqueo-Urízar, Alejandra; Gutiérrez-Maldonado, José; Miranda-Castillo, Claudia
Background A couple of decades ago, hospitals or psychiatric institutions were in charge of caring for patients with schizophrenia; however, nowadays this role is performed by one or more patient's relatives. Evidence shows that informal caregivers experience negative changes in their quality of life (QOL). The aim of this study is to review the main factors associated with the QOL of caregivers of people with schizophrenia. Methods A search through databases from journals published last decade between 1998 and 2008 was performed. In accordance with the inclusion criteria, titles and abstracts of citations obtained from the search were examined independently by two authors and irrelevant articles discarded. The full text of those studies considered relevant by either reviewer were obtained and assessed independently. Where differences of opinion rose they were resolved by discussion. Out of the 258 references, 37 were included in the review. Studies which assessed factors associated with caregivers of people with schizophrenia's quality of life were included and the information summarized. Results Evidence suggest that physical, emotional and economic distress affect negatively caregiver's QOL as a result of a number of unfulfilled needs such as, restoration of patient functioning in family and social roles, economic burden, lack of spare time, among other factors. Conclusion Decreased QOL may be associated with caregivers' burden, lack of social support, course of the disease and family relationships problems. In addition, in developing countries, QOL is affected by caregivers' economic burden. High quality research is needed in order to identify factors associated with QOL over time and testing the efficacy of interventions aiming to improve QOL in caregivers of patients with schizophrenia. PMID:19747384
Noonan, Anne E.; Tennstedt, Sharon L.
Examines 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. Results indicate that meaning in caregiving explained a significant portion of the differences in depression and…
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…
... 38 Pensions, Bonuses, and Veterans' Relief 2 2011-07-01 2011-07-01 false Caregiver benefits. 71.40 Section 71.40 Pensions, Bonuses, and Veterans' Relief DEPARTMENT OF VETERANS AFFAIRS (CONTINUED) CAREGIVERS BENEFITS AND CERTAIN MEDICAL BENEFITS OFFERED TO FAMILY MEMBERS OF VETERANS § 71.40 Caregiver benefits. (a) General Caregiver benefits....
Applequist, Karen L.; Bailey, Donald B., Jr.
This study investigated 52 Navajo family caregiver perceptions about early intervention services and supplemental information was gathered from 15 early interventionists identified by caregivers. Overall, caregivers were satisfied with services. Caregivers' perceptions of program family-centeredness had a strong positive relationship with…
Hoffman, Geoffrey J.; Lee, Jihey; Mendez-Luck, Carolyn A.
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…
Williams, Kristine; Arthur, Anne; Niedens, Michelle; Moushey, Lois; Hutfles, Lewis
Technology provides new opportunities for interventions to improve quality and access to health care. This study evaluated a telehealth application to support family dementia caregivers providing homecare. We explored feasibility of in-home video monitoring and feedback to help caregivers and reduce caregiving burden. A caregiver-patient dyad was recruited from The University of Kansas Alzheimer’s Disease Center. The caregiver triggered video-recordings on a laptop computer using a remote control that also recorded 5 minutes prior to pressing “record.” Recordings were automatically uploaded via the Internet for interdisciplinary team review and feedback. Issues related to Internet transfer and storage of health information and computer security were addressed. Professionals reported the value of video-recordings for identifying antecedents and evaluating caregiver responses. The caregiver reported improved communication and behavior management and ease of use. This study developed protocols, processes, and contractual arrangements and established the feasibility and benefits of home monitoring as a basis for ongoing research. PMID:22997349
Simpson, A Catherine; Young, Joanne; Donahue, Margaret; Rocker, Graeme
The human cost of advanced chronic obstructive pulmonary disease (COPD) for informal caregivers in Canada is mostly unknown. Formal care is episodic, and informal caregivers provide the bulk of care between exacerbations. While patients fear becoming burdensome to family, we lack relevant data against which to assess the validity of this fear. The purpose of our qualitative study was to better understand the extent and nature of ‘burden’ experienced by informal caregivers in advanced COPD. The analysis of 14 informal caregivers interviews yielded the global theme ‘a day at a time,’ reflecting caregivers’ approach to the process of adjusting/coping. Subthemes were: loss of intimate relationship/identity, disease-related demands, and coping-related factors. Caregivers experiencing most distress described greater negative impact on relational dynamics and identity, effects they associated with increasing illness demands especially care recipients’ difficult, emotionally controlling attitudes/behaviors. Our findings reflect substantial caregiver vulnerability in terms of an imbalance between burden and coping capacity. Informal caregivers provide necessary, cost-effective care for those living with COPD and/or other chronic illness. Improved understanding of the physical, emotional, spiritual, and relational factors contributing to their vulnerability can inform new chronic care models better able to support their efforts. PMID:20631814
Newberry, Alyssa G.; Jean Choi, Chien-Wen; Donovan, Heidi S.; Schulz, Richard; Bender, Catherine; Given, Barbara; Sherwood, Paula
Purpose/Objectives To determine whether the perceived level of spirituality in family caregivers of patients with primary malignant brain tumors (PMBTs) changes across the disease trajectory. Design Ongoing descriptive, longitudinal study. Setting Southwestern Pennsylvania. Sample 50 family caregivers of patients with PMBT. Methods Caregivers and care recipients were recruited at time of diagnosis. Participants were interviewed at two subse-quent time points, four and eight months following diagnosis. Main Research Variables Care recipients’ symptoms, neuro-psychologic status, and physical function, as well as caregiver social support. Findings Results showed no significant difference in spirituality scores reported at baseline and eight months (p = 0.8), suggesting that spirituality may be a stable trait across the disease trajectory. Conclusions Spirituality remains relatively stable along the course of the disease trajectory. Reports of caregiver depressive symptoms and anxiety were lower when paired with higher reports of spirituality. Implications for Nursing Clinicians can better identify caregivers at risk for negative outcomes by identifying those who report lower levels of spirituality. Future interventions should focus on the development and implementation of interventions that provide protective buffers such as increased social support. Knowledge Translation Spirituality is a relatively stable trait. High levels of spirituality can serve as a protective buffer from negative mental health outcomes. Caregivers with low levels of spirituality may be at risk for greater levels of burden, anxiety, and stress. PMID:23615145
... Us FAQs Stay Connected You are here Home Global Health and Aging The Burden of Dementia The ... this total in less developed countries ( Figure 9 ). Global efforts are underway to understand and find cures ...
El-Shabrawi, Mortada Hassan; Kamal, Naglaa Mohamed
Hepatitis C virus (HCV) is a major health burden infecting 170-210 million people worldwide. Additional 3-4 millions are newly-infected annually. Prevalence of pediatric infection varies from 0.05%-0.36% in the United States and Europe; up to 1.8%-5.8% in some developing countries. The highest prevalence occurs in Egypt, sub-Saharan Africa, Amazon basin and Mongolia. HCV has been present in some populations for several centuries, notably genotypes 1 and 2 in West Africa. Parenteral anti-schistosomal therapy practiced in the 1960s until the early 1980s had spread HCV infection throughout Egypt. Parenteral acquisition of HCV remains a major route for infection among Egyptian children. Insufficient screening of transfusions, unsterilized injection equipment and re-used needles and syringes continue to be major routes of HCV transmission in developing countries, whereas vertical transmission and adolescent high-risk behaviors (e.g., injection drug abuse) are the major routes in developed countries. The risk of vertical transmission from an infected mother to her unborn/newborn infant is approximately 5%. Early stages of HCV infection in children do not lead to marked impairment in the quality of life nor to cognitive, behavioral or emotional dysfunction; however, caregiver stress and family system strain may occur. HCV slowly progresses to serious complications as cirrhosis (1%-2%) and hepatocellular carcinoma (HCC) especially in the presence of risk factors as hemolytic anemias, obesity, treated malignancy, and concomitant human immune deficiency and/or hepatitis B virus co-infection. HCV vaccine remains elusive to date. Understanding the immune mechanisms in patients who successfully cleared the infection is essential for vaccine development. The pediatric standard of care treatment consists of pegylated interferon-α 2a or b plus ribavirin for 24-48 wk. The new oral direct acting antivirals, approved for adults, need further evaluation in children. Sustained
Mortazavi, Hamed; Peyrovi, Hamid; Joolaee, Soodabeh
Background Population aging has social, economic and political consequences. Most family caregivers prefer to care for their family member older person with chronic disease at home. Despite traditional culture within Iranian families, in some cases, hospitalization of the elderly in nursing home is inevitable, and this affects the old person and his/her family. The aim of this study was to explain how Iranian family cargivers give up caring their older person with chronic condition at home. Methods A grounded theory approach was used to conduct the study. The study setting included four nursing homes under the auspices of Iran Welfare Organization. Fourteen participants were recruited through purposive sampling. Data were collected from December 2010 to March 2011 by Semi-structured interviews lasting about 17 to 95 minutes (average 52 minutes). Constant comparative analysis was used to analyze the data. Results Three main categories appeared at the end of the analysis: “going out of the road of usual life”, “challenge of meeting older person, family and caregivers care needs”, and “the appearance of inconstancy in the family”. They explained exclusively how family caregivers of old people give up caregiving. Conclusion Health care providers are recommended to become familiar with challenges of family caregivers in taking care of older person with chronic disease at home, and then organize their supportive and consulting actions according to family situations in order to improve the life quality of older person and family caregivers. PMID:26171407
Lobchuk, Michelle; Chernomas, Wanda; Marrie, Ruth Ann
Background: Multiple sclerosis (MS) is the most common nontraumatic cause of disability affecting young adults in Canada. Caregivers of patients with MS are highly psychologically burdened. Empathy and helping behaviors are hallmarks of quality care, but when they are challenged, suboptimal patient care can result. We aimed to evaluate the prevalence of negative emotional states among primary caregivers of people with MS; the association between the caregiver's empathy-related behavior and the physical and cognitive impairment of the person with MS; and the association between the caregiver's emotional status and his or her empathy-related behaviors. Methods: We conducted a descriptive, cross-sectional pilot study with family caregivers of noninstitutionalized individuals living with MS. We used univariate linear regression models for each potential predictor. The Kruskal-Wallis test was conducted to compare differences in caregiver empathic responses depending on Profile of Mood States subscale scores. Results: Thirty percent of caregivers had elevated or very elevated mood scores, and such elevated scores were associated with greater functional impact of MS on the person with MS. Patient severity of cognitive impairment was not associated with caregiver mood scores. Caregiver mood state was not associated with empathy-related behaviors. Empathy-related behaviors were less frequent when levels of anger and hostility were higher, but this association did not reach statistical significance. Conclusions: Given the elevated levels of fatigue, depression, and anger observed among caregivers in this study, clinicians need to be aware of the potential impact of caregiving and to assess the needs of caregivers. PMID:27252599
Sanders, Sara; Ott, Carol H; Kelber, Sheryl T; Noonan, Patricia
An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to describe the lived experience of 44 spouses and adult children who are caregivers of persons with Alzheimer's disease and related dementias (ADRD) and scored high on the Marwit and Meuser Caregiver Grief Inventory, Short Form (MM-CGI-SF). This study presents qualitative results from a mixed-methods descriptive study (N = 201). Seven themes emerged from the qualitative data that detailed the caregiving experience of the individuals with high grief: (a) yearning for the past, (b) regret and guilt, (c) isolation, (d) restricted freedom, (e) life stressors, (f) systemic issues, and (g) coping strategies. The first 2 themes reflect grief reactions, whereas isolation, restricted freedom, life stressors, and systemic issues possessed elements of both grief and caregiver burden and stress. Coping strategies used by this group of caregivers included spiritual faith, social supports, and pets. Quantitative analysis confirmed that these themes are unique to individuals with high levels of grief compared with those with moderate/low levels of grief, except for the coping strategies of social support and spiritual faith. Caregivers with high levels of grief may benefit from supportive interventions that are based on reducing feelings of isolation, lack of freedom, and increased guilt and regret, while also addressing feelings of loss. Interventions that facilitate building a supportive network are suggested. Using a screening tool such as the MM-CGI-SF will help in identifying caregivers with high levels of grief who may be in need of additional support. PMID:18958942
... Lifestyle + Risk Reduction Caregiving What Are the Caregiver’s Rights? Caring for someone you love after a heart ... to forget to take care of yourself. These rights will help you remember that you have a ...
Fowler, Christianne Nesbitt; Haney, Tina; Lemaster, Margaret
It is estimated there are between 43.5 and 65.7 million caregivers in the United States who provide unpaid care for older adults. Although the number of informal caregivers is expected to continue to increase, few programs have been established in home healthcare agencies to support these caregivers. This article describes a project that used a unique Web site to connect caregivers of people with dementia in a geographic region with an interprofessional group of healthcare providers and caregiver peers. Virtual Healthcare Neighborhood (VHN) was developed and maintained by an interprofessional group of healthcare providers from nursing, physical therapy, clinical counseling, and dental hygiene. The VHN provided weekly information on topics relevant to caring for a loved one with dementia at home as well as Question and Answer and Social Support Blogging sections for use by participants. This project was viewed as a positive and helpful method to provide support for caregivers of homebound older adults that could be easily replicated by home healthcare agencies. PMID:27023296
Wittenberg-Lyles, Elaine; Demiris, George; Oliver, Debra Parker; Burt, Stephanie
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
This article is the result of 700 interviews that have taken place during the past three years in the «Espace Proches» in Lausanne, a place devoted to home caregivers. It attempts to describe the reality of relatives and highlight the specific difficulties they encounter in the different roles they adopt or are given by their surroundings in the face of a progressive disease. It offers suggestions to the physicians of this population at risk on how to better support them in their physical and psychological burden. PMID:25711789
Aoun, Samar M.; Deas, Kathleen; Howting, Denise; Lee, Gabriel
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
Background Most studies of family attitudes and burden have been conducted in developed countries. Thus it is important to test the generalizability of this research in other contexts where social conditions and extended family involvement may be different. The aim of this study was to assess the relationship between the attitudes of caregivers and the burden they experience in such a context, namely Arica, a town located in the northernmost region of Chile, close to the border with Peru and Bolivia. Methods We assessed attitudes towards schizophrenia (including affective, cognitive and behavioural components) and burden (including subjective distress, rejection and competence) in 41 main caregivers of patients with schizophrenia, all of whom were users of Public Mental Health Services in Arica. Results Attitude measures differed significantly according to socio-demographic variables, with parents (mainly mothers) exhibiting a more negative attitude towards the environment than the rest of the family (t = 4.04; p = 0.000).This was also the case for caregivers with a low educational level (t = 3.27; p < 0.003), for the oldest caregivers (r = 0.546; p = 0.000) and for those who had spent more time with the patient (r = 0.377; p = 0.015). Although attitudes had significant association with burden, their explanatory power was modest (R2 = .104, F = 4,55; p = .039). Conclusions Similar to finding developed countries, the current study revealed a positive and significant relationship between the attitudes of caregivers and their burden. These findings emphasize the need to support the families of patients with schizophrenia in this social context. PMID:21943329
Caqueo-Urízar, Alejandra; Gutiérrez-Maldonado, José; Ferrer-García, Marta; Peñaloza-Salazar, Claudia; Richards-Araya, David; Cuadra-Peralta, Alejandro
ABSTRACT: BACKGROUND: Most studies of family attitudes and burden have been conducted in developed countries. Thus it is important to test the generalizability of this research in other contexts where social conditions and extended family involvement may be different. The aim of this study was to assess the relationship between the attitudes of caregivers and the burden they experience in such a context, namely Arica, a town located in the northernmost region of Chile, close to the border with Peru and Bolivia. METHODS: We assessed attitudes towards schizophrenia (including affective, cognitive and behavioural components) and burden (including subjective distress, rejection and competence) in 41 main caregivers of patients with schizophrenia, all of whom were users of Public Mental Health Services in Arica. RESULTS: Attitude measures differed significantly according to socio-demographic variables, with parents (mainly mothers) exhibiting a more negative attitude towards the environment than the rest of the family (t = 4.04; p = 0.000).This was also the case for caregivers with a low educational level (t = 3.27; p < 0.003), for the oldest caregivers (r = 0.546; p = 0.000) and for those who had spent more time with the patient (r = 0.377; p = 0.015). Although attitudes had significant association with burden, their explanatory power was modest (R2 = .104, F = 4,55; p = .039). CONCLUSIONS: Similar to finding developed countries, the current study revealed a positive and significant relationship between the attitudes of caregivers and their burden. These findings emphasize the need to support the families of patients with schizophrenia in this social context. PMID:21943329
Andruccioli, Jessica; Russo, Maria Maffia; Bruschi, Angela; Pedrabissi, Luigi; Sarti, Donatella; Monterubbianesi, Maria Cristina; Rossi, Sabina; Rocconi, Sabina; Raffaeli, William
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%). PMID:22241459
Gopalan, Geetha; Dean-Assael, Kara; Klingenstein, Kathryn; Chacko, Anil; McKay, Mary M.
This study examines the rates of depressive symptoms and service use among caregivers whose children receive treatment for disruptive behavior disorders. Descriptive analyses examined preliminary baseline data from the Family Groups for Urban Youth with Disruptive Behaviors study for 212 caregivers to determine rates of caregiver depressive symptoms and lifetime mental health service use. Findings indicate that caregivers manifest substantially higher rates of depressive symptoms compared to national norms. Of those caregivers with clinically significant depressive symptoms, less than half reported ever receiving mental health services. Findings suggest that greater attention should be paid to identifying and treating caregiver depression among children receiving treatment for disruptive behavior disorders. PMID:21278845
Talley, Ronda C.; Crews, John E.
Caregiving has only recently been acknowledged by the nation as an important topic for millions of Americans. A psychological or sociological approach to care-giving services has been most often applied, with little attention to the population-based public health outcomes of caregivers. We conceptualize caregiving as an emerging public health issue involving complex and fluctuating roles. We contend that caregiving must be considered in the context of life span needs that vary according to the ages, developmental levels, mental health needs, and physical health demands of both caregivers and care recipients. PMID:17194871
Surkan, Pamela J; Mukherjee, Joia S; Williams, David R; Eustache, Eddy; Louis, Ermaze; Jean-Paul, Thierry; Lambert, Wesler; Scanlan, Fiona C; Oswald, Catherine M; Fawzi, Mary Smith
In many settings worldwide, HIV-positive individuals have experienced a significant level of stigma and discrimination. This discrimination may also impact other family members affected by the disease, including children. The aim of our study was to identify factors associated with stigma and/or discrimination among HIV-affected youth and their HIV-positive caregivers in central Haiti. Recruitment of HIV-positive patients with children aged 10-17 years was conducted in 2006-2007. Data on HIV-related stigma and/or discrimination were based on interviews with 451 youth and 292 caregivers. Thirty-two percent of caregivers reported that children were discriminated against because of HIV/AIDS. Commune of residence was associated with discrimination against children affected by HIV/AIDS and HIV-related stigma among HIV-positive caregivers, suggesting variability across communities. Multivariable regression models showed that lacking social support, being an orphan, and caregiver HIV-related stigma were associated with discrimination in HIV-affected children. Caregiver HIV-related stigma demonstrated a strong association with depressive symptoms. The results could inform strategies for potential interventions to reduce HIV-related stigma and discrimination. These may include increasing social and caregiver support of children affected by HIV, enhancing support of caregivers to reduce burden of depressive symptoms, and promoting reduction of HIV-related stigma and discrimination at the community-level. PMID:20635244
Surkan, Pamela J.; Mukherjee, Joia S.; Williams, David R.; Eustache, Eddy; Louis, Ermaze; Jean-Paul, Thierry; Lambert, Wesler; Scanlan, Fiona C.; Oswald, Catherine M.; Fawzi, Mary C. Smith
In many settings worldwide, HIV-positive individuals have experienced a significant level of stigma and discrimination. This discrimination may also impact other family members affected by the disease, including children. The aim of our study was to identify factors associated with stigma and/or discrimination among HIV-affected youth and their HIV-positive caregivers in central Haiti. Recruitment of HIV-positive patients with children aged 10–17 years was conducted in 2006–2007. Data on HIV-related stigma and/or discrimination were based on interviews with 451 youth and 292 caregivers. Thirty-two percent of caregivers reported that children were discriminated against because of HIV/AIDS. Commune of residence was associated with discrimination against children affected by HIV/AIDS and HIV-related stigma among HIV-positive caregivers, suggesting variability across communities. Multivariable regression models showed that lacking social support, being an orphan, and caregiver HIV-related stigma were associated with discrimination in HIV-affected children. Caregiver HIV-related stigma demonstrated a strong association with depressive symptoms. The results could inform strategies for potential interventions to reduce HIV-related stigma and discrimination. These may include increasing social and caregiver support of children affected by HIV, enhancing support of caregivers to reduce burden of depressive symptoms, and promoting reduction of HIV-related stigma and discrimination at the community-level. PMID:20635244
Phillips, Charles D.
A variety of new treatments for dementia are awaiting or undergoing randomized clinical trails. These trials focus on outcomes such as changes in cognitive function, physical function, or amyloid plaques. What is quite important and is too often missing from these trials are estimates of the impact of these treatments on the social and individual costs of providing care for those facing dementia. Until outcomes such as family caregiver time and caregiver burden are included in trails of dementia treatments, the picture of how well these treatments work will be distressingly incomplete. PMID:26997869
Decarlo, P; Folkman, S
Informal caregivers of people with AIDS provide practical help and nursing care at home. They are often the lovers, spouses, friends, or family of someone with AIDS and are not professional care providers. They provide essential care, saving society considerable expense. Caregivers provide practical support such as shopping, housekeeping, and transportation to clinics, as well as basic assistance such as help with bathing, going to the bathroom, and feeding. As symptoms worsen, caregivers are also likely to adopt the more clinical roles of keeping track of medications, giving injections, inserting catheters, and cleaning wounds. Caregivers also often assess medical and mental conditions, being the first to notice changes in health and to decide when to seek help. Caregivers, however, can suffer considerable care-related stress, leading to numbness, compassion fatigue, or burnout. Caregivers may also fear social rejection, loss of job and/or housing and may therefore hide their caregiving status from family, friends, and co-workers. For women with HIV, being responsible for children at home may make it difficult or impossible to obtain caregiving support for themselves. Helping caregivers benefits both the caregiver and the patient. Professional clinicians can include the caregiver in the triad of care comprised of the doctor, caregiver, and patient. Participating in support groups can also help caregivers. PMID:12293155
In Planned Parenthood vs. Casey, the US Supreme Court upheld all but 1 provision of Pennsylvania law that further restricts access to abortion. The law has a 24-hour waiting period, parental consent for minors with a judicial bypass, husband notification, and the circumstances of each abortion are to be reported to the state for statistical purposes. The Court overturned the husband notification provision even though it had a bypass procedure. The most important aspect of the decision was the change from the strict scrutiny in which abortion was to be left alone unless the state could show a compelling need to regulate it to an undue burden test in which the state is allowed to regulate abortion so long as it does not place an undue burden on women trying to seek abortion services. The 24-hour waiting period was upheld; however, it was also acknowledged that since 83% of women live in counties without abortion services, this may turn out to be an undue burden and it is open to review at later date when statistical evidence is available. The Opinion was written by Justices O'Connor, Kennedy, and Souter. Chief Justice Rehnquist and Justices Scalia, White, and Thomas dissented saying that the undue burden standard was unprecedented in constitutional law and undefinable in practice. It is likely now that the Court will begin writing abortion policy as it clarifies each specific point of the law rather than ruling on fundamental legal principles. PMID:1351612
Kishimoto, Yuki; Terada, Seishi; Takeda, Naoya; Oshima, Etsuko; Honda, Hajime; Yoshida, Hidenori; Yokota, Osamu; Uchitomi, Yosuke
Caregiving is often stressful in an aging society. Our research questions were two. First, In Japan, how often does abusive behavior by the caregivers of elders with clinically mild cognitive dysfunction (mild cognitive impairment and clinically mild dementia) occur? Second, what risk factors affect the abusive behavior? We studied 123 Japanese caregivers and care recipients who had been referred to the Memory Clinic at Okayama University Hospital. We used the Japanese version of the modified Conflict Tactics Scale (m-CTS) to measure abusive behaviors. We estimate the prevalence of abusive behavior meeting threshold (m-CTS score of 2 or higher) for abuse case on the modified m-CTS. The prevalence of abusive behavior was 15.4%. Stepwise multiple regression analysis revealed that the sex of caregivers and scores on the Neuropsychiatric Inventory (NPI), Zarit Caregiver Burden scale, and Addenbrooke's Cognitive Examination had significant effects on the m-CTS scores. We demonstrated that in Japan, caregivers of the elderly with even clinically mild cognitive dysfunction exhibit abusive behavior toward them. The severity of the disease might reflect the prevalence of and factors that affect the abusive conflict score. PMID:23462386
Individuals who care for family members receiving chronic hemodialysis (HD) are likely to experience burdens that may adversely impact their patients. Effective coping strategies are shaped by various factors, including sociodemographic characteristics. To assess the relationship between caregivers and their patients, we studied 225 family-member caregivers of chronic HD patients through answering the Ways of Coping Questionnaire-Revised. Sociodemographic data, including caregiver age, gender, educational level, relationship to the patients, length of care time and weekly hours of caregiving were analyzed using the t-test, analysis of variance and least-significant difference post hoc test. Of the eight coping strategies investigated, seven were significantly related to at least one of the analyzed sociodemographic variables; these were confrontive coping, distancing, self-controlling, seeking social support, accepting responsibility, planful problem solving and positive reappraisal. The findings of the present study may be useful for administering dialysis by nurses for identifying coping strategies among caregivers and for establishing plans of care that would promote coping strategies in relation to the caregiver's sociodemographic characteristics. PMID:26787574
Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita
The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia. PMID:25935206
... Every Day: A Caregiver's Guide Dental Care Every Day: A Caregiver's Guide Main Content Getting Started Three ... regularly. Back to Top Step 1. Brush Every Day Angle the brush at the gumline and brush ...
... Support & Treatment » Treatments and Side Effects ... Checklists for Patients and Caregivers These checklists can help patients and caregivers spot signs of anxiety or depression in themselves or others, and learn about their ...
Brank, Eve M; Wylie, Lindsey E
Informal older adult caregiving allows older adults to stay in their homes or live with loved ones, but decisions surrounding older adult care are fraught with complexities. Related research and case law suggest that an older adult's need for and refusal of help are important considerations; the current study is the first to examine these factors experimentally. Two samples (potential caregivers and care recipients) provided responses regarding anticipated emotions, caregiver abilities, and allocation of daily caregiving decision making based on a vignette portraying an older adult who had a high or low level of autonomy and who accepted or refused help. Study findings suggest differing views about caregiving; potential caregivers may not be as well prepared to take on caregiving as the potential care recipients anticipate and potential caregivers may allocate more decisional responsibility to older adults than the care recipients expect. Implications for older adult abuse are discussed. PMID:24652926
... nia.nih.gov/Go4Life Caregivers and Exercise—Take Time for Yourself Taking care of yourself is one ... you can do as a caregiver. Finding some time for regular exercise can be very important to ...
... Supplements Videos & Tools You Are Here: Home → Multiple Languages → All Health Topics → Caregivers URL of this page: https://medlineplus.gov/languages/caregivers.html Other topics A-Z A B ...
... Search About FCA Mission and Values Programs and Services Overview Board and Staff Grants and Awards FCA Donors FCA History Jobs at FCA Caregiver Education Health Conditions Caregiving Issues and Strategies Fact and Tip Sheets Classes & Events FCA Webinars ...
... Search About FCA Mission and Values Programs and Services Overview Board and Staff Grants and Awards FCA Donors FCA History Jobs at FCA Caregiver Education Health Conditions Caregiving Issues and Strategies Fact and Tip Sheets Classes & Events FCA Webinars ...
... Supplements Videos & Tools You Are Here: Home → Multiple Languages → All Health Topics → Caregivers URL of this page: https://www.nlm.nih.gov/medlineplus/languages/caregivers.html Other topics A-Z A B ...
Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.
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…
McQueen, Dana; Lakes, Kimberley; Rich, Julia; Vaughan, Jessica; Hayes, Gillian; Cooper, Dan; Olshansky, Ellen
home exercise but stated that fears were alleviated by practice in the home and further teaching and learning. Caregivers were willing and able to do the exercises correctly, and they expressed a belief that the intervention had positive effects on their babies and on caregiver-infant interactions. These findings have important implications for nursing practice because nurses are in key positions to teach and encourage caregivers to practice these exercises with their newborn babies. PMID:23618941
Bevans, Margaret F; Ross, Alyson; Wehrlen, Leslie; Klagholz, Stephen D; Yang, Li; Childs, Richard; Flynn, Sharon L; Remaley, Alan T; Krumlauf, Michael; Reger, Robert N; Wallen, Gwenyth R; Shamburek, Robert; Pacak, Karel
There is growing evidence linking caregiver stress with an increased risk for morbidity and mortality. While the emotional and practical burden experienced by caregivers is well established, the physiological changes that may affect the caregiver's health are less understood. This study sought to compare self-reported stress, anxiety and depression along with neuroendocrine and immune markers of stress among adult caregivers of allogeneic hematopoietic stem cell transplantation patients during the acute transplant recovery period to matched non-caregivers controls. Biomarkers and self-reported data were collected at three points during the patient's HSCT: (1) before transplant, (2) after initial transplantation discharge (±7 days) and (3) 6 weeks after initial transplantation discharge. Mixed linear modeling was used to examine differences by group and time. Twenty-one caregivers and 20 controls completed all study procedures. The majority of caregivers were female (57% or 57.1%) and married (95.2%), with a mean age of 52 ± 11.4 years. Caregiver perceived stress, anxiety and depression scores were significantly higher than controls (p < 0.001) with effect sizes (ES) ranging from 1.37 to 1.80 and they did not change over time (p > 0.05) for either group. Caregivers had significantly lower serum cortisol levels than controls at both discharge (p = 0.013; ES = 0.81) and 6 weeks after discharge (p = 0.028; ES = 0.72) but exhibited no significant relationship between self-reported stress and serum cortisol. In addition, caregivers showed a significant inverse relationship between stress and epinephrine levels (r(s)=-0.654, p = 0.021). These findings support the evidence of the caregiving experience being stressful. The counter-intuitive relationship between cortisol and epinephrine might suggest dysregulation of the HPA axis and central nervous system but additional research on the physiological impact of caregiving is warranted. PMID
Chong, Huey Yi; Teoh, Siew Li; Wu, David Bin-Chia; Kotirum, Surachai; Chiou, Chiun-Fang; Chaiyakunapruk, Nathorn
Background Schizophrenia is one of the top 25 leading causes of disability worldwide in 2013. Despite its low prevalence, its health, social, and economic burden has been tremendous, not only for patients but also for families, caregivers, and the wider society. The magnitude of disease burden investigated in an economic burden study is an important source to policymakers in decision making. This study aims to systematically identify studies focusing on the economic burden of schizophrenia, describe the methods and data sources used, and summarize the findings of economic burden of schizophrenia. Methods A systematic review was performed for economic burden studies in schizophrenia using four electronic databases (Medline, EMBASE, PsycINFO, and EconLit) from inception to August 31, 2014. Results A total of 56 articles were included in this review. More than 80% of the studies were conducted in high-income countries. Most studies had undertaken a retrospective- and prevalence-based study design. The bottom-up approach was commonly employed to determine cost, while human capital method was used for indirect cost estimation. Database and literature were the most commonly used data sources in cost estimation in high-income countries, while chart review and interview were the main data sources in low and middle-income countries. Annual costs for the schizophrenia population in the country ranged from US$94 million to US$102 billion. Indirect costs contributed to 50%–85% of the total costs associated with schizophrenia. The economic burden of schizophrenia was estimated to range from 0.02% to 1.65% of the gross domestic product. Conclusion The enormous economic burden in schizophrenia is suggestive of the inadequate provision of health care services to these patients. An informed decision is achievable with the increasing recognition among public and policymakers that schizophrenia is burdensome. This results in better resource allocation and the development of policy
Hüll, M; Wernher, I
Despite an increasing number of trials on the effects of psychosocial interventions in dementia, recommendations concerning these interventions are still based on limited evidence. The S3 dementia guidelines, initiated by the German associations of psychiatry and neurology (DGPPN and DGN), suggest the use of procedures including reality orientation, reminiscence, and cognitive stimulation at recommendation level C. Occupational therapy (including caregiver education), physical activation and music therapy are also suggested at recommendation level C. On a higher level of recommendation (level B), structured support of the caregiver is recommended. Based on the German healthcare system and depending on local structures, this may be offered at the medical office of a general practitioner, a specialist for neurology or psychiatry or at a memory clinic or an outpatient clinic. Furthermore, caregiver support is provided by local branches of the German Alzheimer Association. An increase in recent high level trials suggests an upcoming improvement of the evidence base for psychosocial interventions. PMID:20567961
Bozkurt, Satı; Arabacı, Leyla Baysan; Vara, Şenay; Özen, Samim; Gökşen, Damla; Darcan, Şükran
Objective: To investigate the impact of a psycho-educational program developed for the caregivers of patients diagnosed with osteogenesis imperfecta (OI). Methods: The participants consisted of 16 caregivers. The study was designed as a quasi-experimental pre-test/post-test type study consisting of 10 semi-structured three-hour training sessions. The data were collected using the “Introductory Information Form” and appropriate scales (Burden Interview, Coping Strategies Scale, Problem-Solving Inventory and Psychosocial Adjustment to Illness Scale). The results were evaluated by descriptive statistics, correlation analysis, one-way variance analysis and Bonferroni analysis. Results: Psychosocial adjustment levels of the caregivers of OI patients before their participation in the educational program were found to be associated with styles of coping with stress, problem-solving skills and care burden. After the psycho-educational training, the majority of the participants reported favorable changes in their lives. Following the offered psycho-education resulted in positive changes in the mean scores of the caregivers (p<0.05). Conclusion: Before the education program, the participants were not able to deal efficiently with many aspects of their caregiver responsibilities and suffered from an emotional burden due to lack of knowledge. The program appears to have provided them both with support to achieve significant psychosocial transformation and with an opportunity to reconsider their lives in multiple dimensions. PMID:24932601
Sheehy-Skeffington, Barbara; McLean, Sarah; Bramwell, Michael; O'Leary, Norma; O'Gorman, Aisling
Informal caregivers are important in enabling palliative care patients to die at home, including their role in managing medications. Often these patients are taking multiple medications, imposing an unnecessary burden on those who are already struggling with oral intake. A literature review revealed that, while there are a number of qualitative studies published examining the experience of caregivers looking after patients at the end of life, there is a dearth of published studies specifically examining the impact of managing medications on caregivers. This study explores the experience of caregivers managing medications for patients dying at home, focusing on the impact of polypharmacy, the use of syringe drivers and the use of "as needed" medications for symptom control. Three focus groups were performed, involving bereaved caregivers of patients that had died at home, and were analysed using content thematic analysis. Themes that emerged include: the significant burden of polypharmacy; the positive impact of subcutaneous infusions; the value of being able to give medications as needed for symptom control; the importance of clear guidance to assist with medication management. Strategies are suggested that might ease the burden of medications at the end of life. PMID:24526788
Pompili, Maurizio; Harnic, Désirée; Gonda, Xenia; Forte, Alberto; Dominici, Giovanni; Innamorati, Marco; Fountoulakis, Konstantinos N; Serafini, Gianluca; Sher, Leo; Janiri, Luigi; Rihmer, Zoltan; Amore, Mario; Girardi, Paolo
The aim of the present review was to examine objective and subjective burdens in primary caregivers (usually family members) of patients with bipolar disorder (BD) and to list which symptoms of the patients are considered more burdensome by the caregivers. In order to provide a critical review about caregiver’s burden in patients with bipolar disorder, we performed a detailed PubMed, BioMedCentral, ISI Web of Science, PsycINFO, Elsevier Science Direct and Cochrane Library search to identify all papers and book chapters in English published during the period between 1963 and November 2011. The highest levels of distress were caused by the patient’s behavior and the patient’s role dysfunction (work, education and social relationships). Furthermore, the caregiving role compromises other social roles occupied by the caregiver, becoming part of the heavy social cost of bipolar affective disorder. There is a need to better understand caregivers’ views and personal perceptions of the stresses and demands arising from caring for someone with BD in order to develop practical appropriate interventions and to improve the training of caregivers. PMID:24660140
Rentz, Anne M; Skalicky, Anne M; Pashos, Chris L; Liu, Zhimei; Magestro, Matthew; Pelletier, Corey L; Prestifilippo, Judith A; Nakagawa, JoAnne; Frost, Michael D; Dunn, David W; Wheless, James W
Disease burden associated with tuberous sclerosis complex, a genetic disorder characterized by benign tumor growth including lesions in multiple organs, puts tremendous demands on families. This analysis examines the physical and mental health burden of tuberous sclerosis complex caregivers in the United States. An institutional review board-approved web-based survey of tuberous sclerosis complex caregivers collected information; descriptive analyses were conducted on age-based subgroups. A total of 275 caregivers of tuberous sclerosis complex patients responded. Mean patient age ≤ 18 years was 6.9 (±4.4) and 42.3 (±18.2) for patients >18 years of age. Caregivers reported multiple tuberous sclerosis complex manifestations and high health care utilization for patients. Caregivers spending more time on doctor visits or researching tuberous sclerosis complex had lower physical and mental health-related quality of life scores and more depressive symptoms. Tuberous sclerosis complex caregivers had significantly lower physical and mental health-related quality of life scores and more depressive symptomatology compared to US healthy adult population norms. PMID:25838447
other chronic diseases. The increased burden of caregiving contributes to a host
Smith, Bert Kruger
This document addresses the dilemma faced by families with an aging or disabled member and the stress associated with the role of family caregiver. Emotions experienced by family caregivers, especially when the caregiver is an adult child caring for an elderly or frail parent, are discussed and feelings of desertion, dependence, and sibling…
... beneficiary travel under 38 CFR part 70. (c) Primary Family Caregiver benefits. VA will provide to Primary...) CAREGIVERS BENEFITS AND CERTAIN MEDICAL BENEFITS OFFERED TO FAMILY MEMBERS OF VETERANS § 71.40 Caregiver... include the provision of medication, inpatient psychiatric care, or other medical procedures related...
... beneficiary travel under 38 CFR part 70. (c) Primary Family Caregiver benefits. VA will provide to Primary...) CAREGIVERS BENEFITS AND CERTAIN MEDICAL BENEFITS OFFERED TO FAMILY MEMBERS OF VETERANS § 71.40 Caregiver... include the provision of medication, inpatient psychiatric care, or other medical procedures related...
... beneficiary travel under 38 CFR part 70. (c) Primary Family Caregiver benefits. VA will provide to Primary...) CAREGIVERS BENEFITS AND CERTAIN MEDICAL BENEFITS OFFERED TO FAMILY MEMBERS OF VETERANS § 71.40 Caregiver... include the provision of medication, inpatient psychiatric care, or other medical procedures related...
Montgomery, Rhonda; Kwak, Jung
Care managers, including nurses and social workers, often lack information that would help them more effectively target services to caregivers' needs. Useful information includes the type of services that will be most helpful for caregivers and the best time to start using these services. Generally, caregivers are simply told what services they…
Szinovacz, Maximiliane E.; Davey, Adam
Purpose: Caregiving research has typically relied on cross-sectional data that focus on the primary caregiver. This approach neglects the dynamic and systemic character of caregiver networks. Our analyses addressed changes in adult child care networks over a 2-year period. Design and Methods: The study relied on pooled data from Waves 1 through 5…
Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael
Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…
Moorman, Sara M.; Macdonald, Cameron
Purpose of the study: To examine (a) whether the content of caregiving tasks (i.e., nursing vs. personal care) contributes to variation in caregivers' strain and (b) whether the level of complexity of nursing tasks contributes to variation in strain among caregivers providing help with such tasks. Design and methods: The data came from the Cash…
Scharlach, Andrew E.
This guide was designed to help individuals interested in developing caregiver support groups. It begins with an overview of the caregiving situation, identifying stresses associated with caregiving and factors which have been shown to moderate stress. Purposes of a support group are discussed; differences between support and therapy groups are…
Daire, Andrew P.; Torres, Jennifer; Edwards, Nivischi N.
The authors describe how 3 groups of family caregivers (spouses, daughters, and sons) are affected by the caregiving role. In addition, clinical considerations and interventions for mental health professionals working with these different groups of family caregivers are discussed. A clinical case example is also presented. (Contains 2 tables.)
Humble, Aine M.; Keefe, Janice M.; Auton, Greg M.
Using the concept of "retirement congruency" (RC), which takes into account greater variation in retirement decisions (low, moderate, or high RC) than a dichotomous conceptualization (forced versus chosen), multinomial logistic regression was conducted on a sample of caregivers from the 2002 Canadian General Social Survey who were retired from…
Moon, Heehyul; Dilworth-Anderson, Peggye
Background: previous studies have well documented the characteristics of baby boomers but less is known about the experiences of boomer caregivers (CGs) of people with dementia. Objective: the purpose of this study was to compare the characteristics of boomer CGs of people with dementia with those of boomer CGs for people without dementia and to ascertain factors associated with outcomes. Design: we selected baby boomer CGs from the National Study of Caregiving (NSOC) with 650 primary boomer CGs (138 CGs of people with dementia and 512 CGs of people without dementia). Methods: the Stress Process Model (SPM) was used to examine the effects of resources (the use of paid help and informal support) and stressors (primary: level of CG care activities and interrupted sleep; secondary: strain of caregiving on work, other care and social activities) on CGs' down, depressed or hopeless feelings and self-perceived general health. T-tests and chi-square tests were used to compare SPM domain differences and ordinary least-square multiple regression analysis was used to investigate predictors of CGs' outcomes. Results: high blood pressure and arthritis were the most prevalent chronic diseases in both groups. Boomer CGs of people with dementia reported providing more help with daily activities, higher level of caregiving and social activity conflict, experiencing more interrupted sleep and more down, depressed or hopeless feelings than CGs of people without dementia. Different factors predicted boomer CGs' outcomes. Conclusion: the current results yield important information about the considerable differences between two baby boomer CG groups within the caregiving experiences. The findings highlight the need to provide tailored interventions to boomer CGs to help them cope with caregiving stress to improve their physical and mental health. PMID:25359299
Gitlin, Laura N.; Jacobs, Mimi; Earland, Tracey Vause
Purpose: Families of dementia patients receiving skilled homecare do not receive supportive services. We evaluated whether a proven intervention, Environmental Skill-building Program (ESP), which reduces caregiver burden and enhances skills managing patient functioning, can be integrated into homecare practices of occupational therapists (OTs) and…
Background Hereditary angioedema (HAE) due to C1 inhibitor deficiency is a rare but serious and potentially life-threatening disease marked by spontaneous, recurrent attacks of swelling. The study objective was to characterize direct and indirect resource utilization associated with HAE from the patient perspective in Europe. Methods The study was conducted in Spain, Germany, and Denmark to assess the real-world experience of HAE via a cross-sectional survey of HAE patients, including direct and indirect resource utilization during and between attacks for patients and their caregivers over the past 6 months. A regression model examined predictors of medical resource utilization. Results Overall, 164 patients had an attack in the past 6 months and were included in the analysis. The most significant predictor of medical resource utilization was the severity of the last attack (OR 2.6; p < 0.001). Among patients who sought medical care during the last attack (23%), more than half utilized the emergency department. The last attack prevented patients from their normal activities an average of 4–12 hours. Patient and caregiver absenteeism increased with attack severity and frequency. Among patients who were working or in school (n = 120), 72 provided work/school absenteeism data, resulting in an estimated 20 days missing from work/school on average per year; 51% (n = 84) indicated that HAE has hindered their career/educational advancement. Conclusion HAE poses a considerable burden on patients and their families in terms of direct medical costs and indirect costs related to lost productivity. This burden is substantial at the time of attacks and in between attacks. PMID:24996814
Studies the impact of the loan burden of seniors at 27 colleges and universities in 1998 on their plans to pursue graduate and professional degrees. Finds no adverse impact of loan burdens on student postgraduate degree plans. (PKP)
Kowal, John; Wilson, Keith G.; McWilliams, Lachlan A.; Péloquin, Katherine; Duong, David
Chronic pain is a debilitating condition that can impact various facets of interpersonal functioning. Although some studies have examined the extent to which family members are affected by an individual’s chronic pain, none have examined patients’ perceptions of feeling that they have become a burden to others. Research on self-perceived burden in different medical populations, such as cancer, amyotrophic lateral sclerosis, and stroke, has shown that it is associated with physical symptoms and, more robustly, with psychological difficulties and concerns. The present study examined the prevalence and predictors of self-perceived burden in a tertiary chronic pain sample. Participants were consecutive patients (N=238) admitted to an outpatient, interdisciplinary, chronic pain management program at a rehabilitation hospital. At admission, participants completed a battery of psychometric questionnaires assessing self-perceived burden, as well as a number of clinically-relevant constructs. Their significant others (n=80) also completed a measure of caregiver burden. Self-perceived burden was a commonly reported experience among chronic pain patients, with over 70% of participants endorsing clinically-elevated levels. It was significantly correlated with pain intensity ratings, functional limitations, depressive symptoms, attachment anxiety, pain self-efficacy, and caregiver burden. Self-perceived burden was also correlated with an item assessing suicidal ideation. In a hierarchical regression model, depressive symptoms, pain self-efficacy, and adult attachment significantly predicted self-perceived burden after controlling for demographic and pain-related variables. In conclusion, self-perceived burden is a clinically-relevant and commonly reported interpersonal experience in patients with longstanding pain. PMID:22703692
Seima, Marcia Daniele; Lenardt, Maria Helena; Caldas, Célia Pereira
Cross-sectional quantitative and qualitative-descriptive study, aimed to interpret the relationship in the caring of family caregivers and Alzheimer's elderly sufferers, grounded in the concrete dialectic of participation according to Gabriel Marcel's four precepts. The convenience sample entailed 208 family caregivers in the quantitative and 36 in the qualitative aspect. The caregivers were women (n=178, 86%), aged 22-83 years, living with the elderly (n=169, 81%), with more than eight years of formal education (n=147, 71%), not having an occupation (n=121, 58%) and with mild burden (n=96, 46.2%). The synthesis theme was The order of mystery pervaded by faith and supported by hope. The relationship between family members and Alzheimer's elderly sufferer encompasses love, faithfulness, hope and presence. Interpreting this relationship enables nurses to develop sensitivity and creativity for professional practice, taking into account the subjectivity and mystery in human relations. PMID:24861066
McCoyd, Judith L. M.; Akincigil, Ayse; Paek, Eun Kwang
The evidence that the birth of a child with a disability leads to divorce or separation is equivocal, with the majority of recent research suggesting that such a birth and childrearing may be stressful, but not necessarily toxic, to the caregiver relationship. Such research has been limited by small sample sizes and nonrepresentative samples and…
Pascual, Angel María; Santamaría, Juan Luis
This article provides a definition and description of grief, its characteristics, and the current explanatory models of this phenomenon (the stage model, task model, constructivist model and dual process model). The authors argue that a state of mourning in advance is produced in the process of dementia as a result of significant relational loss before death and describe the risk factors for complicated grief in caregivers: overload, lack of personal and material resources, delegation of care, and complex feelings such as guilt. The need for healthcare organizations to provide professional caregivers with the appropriate means to help with grief and to develop their own measures to prevent burnout is stressed. These measures could include protocols that provide bereavement intervention with the family, the primary caregiver, other patients and/or residents and the professional caregiving team. Finally, losses in persons with dementia must be taken into consideration, avoiding phenomena such as silencing and overprotection and encouraging acceptance and emotional support of their pain so that organic and emotional complications do not occur. PMID:19837483
Background Both Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries. Methods Giddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey. Results In total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China. Conclusions Dementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like
Moore, Helen; Gillespie, Alex
Disagreements and misunderstandings between informal caregivers and care-receivers have been widely reported, but the causes are unclear. The present article compares the views of people with acquired brain injury and their main informal caregivers (28 dyads, n = 56). First, we report a quantitative analysis finding that the majority of disagreements were about caregivers' identity. Caregivers saw themselves as less confident, less intelligent, more embarrassed, more independent and more overprotective than care-receivers rated them to be. Caregivers understood the care-receivers' ratings but disagreed with them' Second, we report a qualitative analysis focussing on how caregivers felt themselves to be perceived by significant others. Caregivers felt that the care-receiver, family members, the general public, health services and even friends often have negative views of them. The 'caregiving bind' is proposed as a cause of caregivers' negative identity. It arises when caregivers try to protect the care-receiver's identity by concealing the extent of informal care provision, with the unintended consequence of undermining the prospects of the caregiver receiving positive social recognition for the challenging work of caregiving. The caregiving bind has implications for therapy and points to the potential of friends and health services to provide caregivers with positive social recognition. PMID:24996218
Fujitani, Kenji; Carroll, Matt; Yanagisawa, Robert; Katz, Craig
The 2011 Great East Japan Earthquake precipitated a triple disaster of earthquake, tsunami and nuclear radiation disaster. To quantify the prevalence of burnout and psychiatric distress in local healthcare providers (caregivers) more than 2 years after the disaster, this study surveyed caregivers from affected areas through interviews about topics of concerns and two questionnaires: Maslach Burnout Inventory and General Health Questionnaire. Concerns listed by respondents were primarily radiation related: additional stress, concern for children, concern for local food, and sleep difficulties. We found significant number of caregivers to have signs of emotional exhaustion, low personal accomplishment, and psychological distress. Our findings suggest that local caregivers are experiencing substantial mental health burdens, which have unfortunately remained static from the year prior, even 2 years after the fact. Therefore, long term psychological support and improvement in caregiver work conditions are essential to maintain sustainable care in rebuilding disaster stricken areas. PMID:26303904
Chien, Wai-Tong; Yeung, Frederick K K; Chan, Alan H L
This descriptive survey investigated the level of perceived stigma among Chinese patients with severe mental illness (SMI) and its relationships with patients' psychosocial conditions and family caregivers' and mental health professionals' attitudes toward SMI in Hong Kong. A clustered, random sample of 311 patients and their family caregivers and 73 Chinese professionals participated. The patients reported a high level of withdrawal/secrecy and the professionals perceived a low to moderate level of stereotype/restriction to their patients. Families' expressed emotion and caregiving burden could increase patients' perceived stigma. Strategies in de-stigmatization of mental illness have been discussed, particularly from family-based approach. PMID:23254907
Malaeb, M; Bizri, A R; Ghosn, N; Berry, A; Musharrafieh, U
Salmonellosis is a disease that represents a major public health concern in both developing and developed countries. The aim of this article is to evaluate the public health burden of Salmonella illness in Lebanon. The current scope of the Salmonella infection problem was assessed in relation to disease incidence and distribution with respect to age, gender and district. Factors that provide a better understanding of the magnitude of the problem were explored and highlighted. Data reported to the Epidemiologic Surveillance Department at the Lebanese Ministry of Public Health between 2001 and 2013 was reviewed. Information obtained was compared to information reported regionally and globally. The estimated true incidence was derived using multipliers from the CDC and Jordan. A literature review of all published data from Lebanon about Salmonella susceptibility/resistance patterns and its serious clinical complications was conducted. The estimated incidence was 13·34 cases/100 000 individuals, most cases occurred in the 20-39 years age group with no significant gender variation. Poor and less developed districts of Lebanon had the highest number of cases and the peak incidence was in summer. Reflecting on the projected incidence derived from the use of multipliers indicates a major discrepancy between what is reported and what is estimated. We conclude that data about Salmonella infection in Lebanon and many Middle Eastern and developing countries lack crucial information and are not necessarily representative of the true incidence, prevalence and burden of illness. PMID:26743045
López-Campos, José Luis; Tan, Wan; Soriano, Joan B
It is estimated that the world population will reach a record 7.3 billion in 2015, and the high burden of chronic conditions associated with ageing and smoking will increase further. Respiratory diseases in general receive little attention and funding in comparison with other major causes of global morbidity and mortality. In particular, chronic obstructive pulmonary disease (COPD) has been a major public health problem and will remain a challenge for clinicians within the 21st century. Worldwide, COPD is in the spotlight, since its high prevalence, morbidity and mortality create formidable challenges for health-care systems. This review emphasizes the magnitude of the COPD problem from a clinician's standpoint by drawing extensively from the new findings of the Global Burden of Disease study. Updated, distilled information on the population distribution of COPD is useful for the clinician to help provide an appreciation of the relative impact of COPD in daily practice compared with other chronic conditions, and to allocate minimum resources in anticipation of future needs in care. Despite recent trends in reduction of COPD standardized mortality rates and some recent successes in anti-smoking efforts in a number of Western countries, the overarching demographic impact of ageing in an ever-expanding world population, joined with other factors such as high rates of smoking and air pollution in Asia, will ensure that COPD will continue to pose an ever-increasing problem well into the 21st century. PMID:26494423
Mutter, J. C.
essential and could hold the key to making gains toward alleviating the burden of global poverty.
Thomas, Priya Treesa; Rajaram, Prakashi; Nalini, Atchayaram
Families of children with Duchenne muscular dystrophy (DMD) go through significant challenges in dealing with the condition. Few studies have looked into the situation, especially in the sociocultural scenario that is unique to India. The authors' aim was to identify the psychosocial challenges for caregivers of children with DMD. A cross-sectional descriptive study was perfomed among the caregivers of 60 children with DMD who were attending the neuromuscular disorders clinic of a national tertiary referral center for neurological disorders. The knowledge and attitude, psychosocial needs, burden, and coping patterns were assessed in an interview. The findings showed that parents of children with DMD tended to have inadequate understanding of the disease but had a positive attitude, had a moderate family burden, and tended to rely more on religion, focus on and venting of emotions, and instrumental and emotional social support for coping. Caregivers of children with DMD would benefit from psychosocial intervention to address their understanding of and attitude toward the disease, as well as burden of dealing with it, and to help them develop their coping skills and meet their children's and their own needs. PMID:25095627
Abayomi, Olukayode; Akinhanmi, Akinwande O; Adelufosi, Adegoke O
Few studies in Nigeria have investigated the burden of caring for elderly persons with mental illness. The aim of this study was to examine psychiatric morbidity and burden of care among caregivers of outpatients of a psychogeriatric clinic. Burden of care was evaluated with Zarit Burden Interview. A questionnaire was also used to elicit caregivers' sociodemographic and caregiving variables while psychological well-being was assessed with the General Health Questionnaire (GHQ). Overall, 52.3% had high care burden. High care burden was associated with financial difficulty (χ(2) = 9.37; df = 1; p = 0.002; OR = 3.1; 95% CI = 1.50-6.4), restrictions on caregivers' social activity (χ(2) = 4.87; df = 1; p = 0.027; OR = 2.4; 95% CI = 1.09-5.27), lack of support from relatives (χ(2) = 6.85; df = 1; p = 0.009; OR = 6.3; 95% CI = 1.35-29.6), physical health problems (χ(2) = 10.52; df = 1; p = 0.001; OR = 4.7; 95% CI = 1.75-12.7), and psychiatric morbidity (χ(2) = 4.05; df = 1; p = 0.044; OR = 2.62; 95% CI = 1.00-6.85). Psychiatric morbidity was predicted by physical health problems (OR = 3.0; 95% CI = 1.1-8.1), financial difficulty (OR = 17.2; 95% CI = 3.8-77.5), and job loss (OR = 5.3; 95% CI = 2.0-13.8). Care burden is a significant problem among caregivers of elderly persons with mental illness attending the clinic. This may have important implications for the mental well-being of the patients. PMID:26497309
Ong, Hui Chien; Ibrahim, Norhayati; Wahab, Suzaily
Nowadays, family members are gradually taking on the role of full-time caregivers for patients suffering from schizophrenia. The increasing burden and tasks of caretaking can cause them psychological distress such as depression or anxiety. The aim of this study was to measure the correlation between perceived stigma and coping, and psychological distress as well as determine the predictors of psychological distress among the caregivers. Results showed that 31.5% of the caregivers experienced psychological distress. “Community rejection” was found to be positively associated with psychological distress. In case of coping subscales, psychological distress had a positive correlation with substance use, use of emotional support, behavioral disengagement, venting, and self-blame, while it was negatively correlated with “positive reframing”. Behavioral disengagement was the best predictor of psychological distress among caregivers of patients with schizophrenia, followed by positive reframing, use of emotional support, self-blame, and venting. Health practitioners can use adaptive coping strategies instead of maladaptive for caregivers to help ease their distress and prevent further deterioration of psychological disorders. PMID:27574475
Gemmill, Robin; Cooke, Liz; Williams, Anna Cathy; Grant, Marcia
Background Informal caregivers (IC) for medically fragile hematopoietic cell transplant (HCT) patients are a vital unrecognized population supporting the transplant patient along the illness continuum. The long transplant recovery period shifts a greater burden of care to the patient’s IC. Assessment of HCT caregiver quality of life and health status is critical to implementation of timely intervention and support. Methods A literature search using several search strategies covering 1980 to 2010 identified studies on ICs of hematopoietic cell transplant patients. These studies were summarized within the caregiver concepts of quality of life, role, and resources. Findings of this review were used to create recommended interventions and identify implications for further research. Results Although limited, research on ICs of hematopoietic call transplant patients provides beginning evidence for clinical interventions to support this caregiver population. Interventions created focus on Education, Psychosocial Support, and Self Care. Conclusions Although limited randomized trials of interventions have been reported, descriptive studies provide evidence for creating intervention content that addresses needs of ICs of hematopoietic cell transplant patients. Testing of these interventions and additional areas of research are identified. Implications for Practice Beginning descriptive evidence provides the basis for interventions for ICs of hematopoietic cell transplant patients. These interventions support caregiver quality of life and role implementation depending on individual caregivers’ resources and needs. Further evaluation and clinical research is needed. PMID:21242762
Ong, Hui Chien; Ibrahim, Norhayati; Wahab, Suzaily
Nowadays, family members are gradually taking on the role of full-time caregivers for patients suffering from schizophrenia. The increasing burden and tasks of caretaking can cause them psychological distress such as depression or anxiety. The aim of this study was to measure the correlation between perceived stigma and coping, and psychological distress as well as determine the predictors of psychological distress among the caregivers. Results showed that 31.5% of the caregivers experienced psychological distress. "Community rejection" was found to be positively associated with psychological distress. In case of coping subscales, psychological distress had a positive correlation with substance use, use of emotional support, behavioral disengagement, venting, and self-blame, while it was negatively correlated with "positive reframing". Behavioral disengagement was the best predictor of psychological distress among caregivers of patients with schizophrenia, followed by positive reframing, use of emotional support, self-blame, and venting. Health practitioners can use adaptive coping strategies instead of maladaptive for caregivers to help ease their distress and prevent further deterioration of psychological disorders. PMID:27574475
Mittelman, Mary S.; Bartels, Stephen J.
One of the most devastating impacts of Alzheimer’s disease and related dementias is the toll on caregivers. Evidence from randomized clinical trials has demonstrated the effectiveness of providing psychosocial interventions for caregivers to lessen their burden. However, the implementation of such interventions in community settings has proved challenging. This case study describes outcomes of the implementation of an evidence-based intervention in a multisite program in Minnesota. Consistent with the original randomized clinical trial of the intervention, assessments of this program showed decreased depression and distress among caregivers. Participating in a greater number of caregiver counseling sessions was also associated with longer time to nursing home placement for the person with dementia. Some of the challenges in the community setting included having caregivers complete the full six counseling sessions and acquiring complete outcome data. Given the challenges faced in the community setting, web-based training for providers may be a cost-effective way to realize the maximum benefits of the intervention for vulnerable adults with dementia and their families. PMID:24711319
Zucchella, Chiara; Bartolo, Michelangelo; Bernini, Sara; Picascia, Marta; Sinforiani, Elena
Unlike in other chronic diseases, the Quality of Life (QoL) of patients affected by Alzheimer Disease (AD) has not been well established, primarily because of the difficulties stemming from the study of patients with cognitive disorders. Because no cure is currently available for AD, the optimization of QoL represents the best possible outcome attainable in all stages of disease, making QoL assessment mandatory. This study identified variables related to patients' QoL and examined the agreement between patients' and caregivers' QoL ratings. A total of 135 dyads (patient and principal caregiver) were enrolled in the study. Patients' QoL evaluations showed a negative relationship with depressive mood and a positive relationship with Activities of Daily Living (ADL), whereas caregivers' QoL ratings showed a negative relationship with patients' depressive mood and behavioral disturbances. Caregivers tended to underestimate patients' QoL compared with the patients' own self-evaluations, with patients' dependency in performing ADL and behavioral disorders as well as caregivers' burdens and depression being the main factors associated with the discrepancy in these evaluations. These findings suggest that the use of proxies as a substitute for the self-report of QoL data should be treated with caution, always accounting for the presence of potential bias. PMID:24936799
Friedemann, Marie-Luise; Newman, Frederick L.; Buckwalter, Kathleen C.; Montgomery, Rhonda J. V.
Aims To predict South Florida family care-givers’ need for and use of informal help or formal services; specifically, to explore the predictive power of variables suggested by the Caregiver Identity Theory and the literature and develop and test a structural model 0. Background In the USA, most of the care to older adults is given by family members. Care-givers make economic and social sacrifices that endanger their health. They feel burdened, if they receive no assistance with their tasks; however, services available are not sufficiently used. Design This cross-sectional correlational study was a survey of family care-givers in their home, using standardized and/or pre-tested scales and a cognitive status test of their patients. Methods A random sample of 613 multiethnic care-givers of frail elders was recruited in home care and community agencies. The interviews occurred between 2006–2009. Analyses involved correlation and regression analyses and structural equation modeling. Outcome measures were need and use of family help and formal services. Results/Findings The model yielded excellent fit indices replicated on three random samples of 370. The patients’ functional limitations yielded the strongest predictive coefficients followed by care-giver stress. Cultural indicators played a minor role. Conclusion The lack of a link between resource need and use suggested access barriers. Important for policy makers and service providers are the delivery of high-quality services and the use of a personal and individualized approach with all ethnicities. Quality service includes understanding the care-giving situations and requires a trusting relationship with family care-givers. PMID:23980518
Lin, Lan-Ping; Hsu, Shang-Wei; Kuo, Meng-Ting; Wu, Jia-Lin; Chu, Cordia; Lin, Jin-Ding
Caregivers of adults with an intellectual disability experience depressive symptoms, but the aging factors of the care recipients associated with the depressive symptoms are unknown. The objective of this study was to analyze the onset aging conditions of adults with an intellectual disability that associated with the depression scores of their primary caregivers. A cross-sectional survey was administered to gather information from 455 caregivers of adults with an intellectual disability about their symptoms of depression which assessed by a 9-item Patient Health Questionnaire (PHQ-9). The 12 aging conditions of adults with an intellectual disability include physical and mental health. The results indicate that 78% of adults with an intellectual disability demonstrate aging conditions. Physical conditions associated with aging include hearing decline (66.3%), vision decline (63.6%), incontinence (44%), articulation and bone degeneration (57.9%), teeth loss (80.4), physical strength decline (81.2%), sense of taste and smell decline (52.8%), and accompanied chronic illnesses (74.6%). Mental conditions associated with aging include memory loss (77%), language ability deterioration (74.4%), poor sleep quality (74.2%), and easy onset of depression and sadness (50.3%). Aging conditions of adults with an intellectual disability (p<0.001) was one factor that significantly affected the presence of depressive symptom among caregivers after controlling demographic characteristics. Particularly, poor sleep quality of adults with an intellectual disability (yes vs. no, OR=3.807, p=0.002) was statistically correlated to the occurrence of significant depressive symptoms among their caregivers. This study suggests that the authorities should reorient community services and future policies toward the needs of family caregivers to decrease the burdens associated with caregiving. PMID:24467811
Marais, B J; Obihara, C C; Warren, R M; Schaaf, H S; Gie, R P; Donald, P R
The burden of childhood tuberculosis (TB) reflects recent transmission within a community and the level of TB control achieved within the adult (maintenance host) population. Children contribute little to the maintenance of the TB epidemic, but they may suffer severe TB-related morbidity and mortality. This review describes the main determinants of the burden of childhood TB within a particular community. Basic infectious disease principles identify the community, and not the individual, as the central entity that sustains an epidemic. The prevalence of TB is determined by the community's exposure to Mycobacterium tuberculosis, and their vulnerability to developing disease following exposure. The main variables that influence both exposure and vulnerability are discussed. Multiple variables are linked to poverty, and it is their cumulative effect, rather than the exact degree of poverty, that seems most important. Diligent contact tracing and the use of preventive chemotherapy will reduce the TB-related suffering of children. The burden of childhood TB, however, is a reflection of our ability to control the epidemic; this remains the ultimate challenge. Current efforts to control the TB epidemic aim to reduce transmission by treating sputum smear-positive adults, while very little emphasis is placed on reducing the vulnerability of high-burden communities. Successful control of the epidemic is the most effective way to reduce the burden of childhood TB, but this will require a holistic approach that acknowledges the importance of sustainable poverty alleviation. PMID:16466051
Wiener, L; Battles, H; Zadeh, S; Pao, M
Few data exist pertaining to the perceived burdens or benefits of medically ill children participating in psychological research studies, particularly in outpatient pediatric settings. As part of a larger study that involved completing self-report questionnaires, this study assessed whether participation was burdensome and/or beneficial to 271 children undergoing treatment for cancer, NF1, sickle cell, HIV, primary immune deficiencies, and Li Fraumeni and to their caregivers. The majority of patients (83%) and their caregivers (93%) did not find participating burdensome. Moreover, the majority of patients (85%) and caregivers (95%) found at least some benefit to participation, including finding it helpful to be asked about issues that affect their life and feeling good about helping others. The data suggest that resistance to psychological research based on the belief that such research is intrusive and potentially harmful overestimates the negative aspects and potentially impedes progress studying positive psychosocial outcomes in outpatient pediatric research. PMID:26783591
Introduction Heart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes. Aims The aims of this study are to explore registered nurses’ perceptions about the situation of family caregivers to patients with heart failure, and registered nurses’ interventions, in order to improve family caregivers’ situation. Methods The study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis. Results Two content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area “Family caregivers' situation” includes two categories: “To be unburdened” and “To comprehend the heart failure condition and its consequences”. The content area “Interventions to improve family caregivers' situation” includes two categories: “Individualized support and information” and “Bridging contact”. Conclusions Registered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care
Background Severe illness can disrupt family life, cause family dysfunction, strain resources, and cause caregiver burden. The family's ability to cope with crises depends on their resources. This study sought to assess families of children with cancer in terms of family function-dysfunction, family caregiver strain and the adequacy of family resources using a new family resources assessment instrument. Methods This is a cross-sectional study involving 90 Filipino family caregivers of children undergoing cancer treatment. This used a self-administered questionnaire composed of a new 12-item family resources questionnaire (SCREEM-RES) based on the SCREEM method of analysis, Family APGAR to assess family function-dysfunction; and Modified Caregiver Strain Index to assess strain in caring for the patient. Results More than half of families were either moderately or severely dysfunctional. Close to half of caregivers were either predisposed to strain or experienced severe strain, majority disclosed that their families have inadequate economic resources; many also report inaccessibility to medical help in the community and insufficient educational resources to understand and care for their patients. Resources most often reported as adequate were: family's faith and religion; help from within the family and from health providers. SCREEM-RES showed to be reliable with Cronbach's alpha of 0.80. There is good inter-item correlation between items in each domain: 0.24-0.70. Internal consistency reliability for each domain was also good: 0.40-0.92. Using 2-point scoring system, Cronbach's alpha were slightly lower: full scale (0.70) and for each domain 0.26-.82. Results showed evidence of association between family resources and family function based on the family APGAR but none between family resources and caregiver strain and between family function and caregiver strain. Conclusion Many Filipino families of children with cancer have inadequate resources, especially economic
Background Gender segregation of occupations, which typically assigns caring/nurturing jobs to women and technical/managerial jobs to men, has been recognized as a major source of inequality worldwide with implications for the development of robust health workforces. In sub-Saharan Africa, gender inequalities are particularly acute in HIV/AIDS caregiving (90% of which is provided in the home), where women and girls make up the informal (and mostly unpaid) workforce. Men's and boy's entry into HIV/AIDS caregiving in greater numbers would both increase the equity and sustainability of national and community-level HIV/AIDS caregiving and mitigate health workforce shortages, but notions of gender essentialism and male primacy make this far from inevitable. In 2008 the Capacity Project partnered with the Lesotho Ministry of Health and Social Welfare in a study of the gender dynamics of HIV/AIDS caregiving in three districts of Lesotho to account for men's absence in HIV/AIDS caregiving and investigate ways in which they might be recruited into the community and home-based care (CHBC) workforce. Methods The study used qualitative methods, including 25 key informant interviews with village chiefs, nurse clinicians, and hospital administrators and 31 focus group discussions with community health workers, community members, ex-miners, and HIV-positive men and women. Results Study participants uniformly perceived a need to increase the number of CHBC providers to deal with the heavy workload from increasing numbers of patients and insufficient new entries. HIV/AIDS caregiving is a gender-segregated job, at the core of which lie stereotypes and beliefs about the appropriate work of men and women. This results in an inequitable, unsustainable burden on women and girls. Strategies are analyzed for their potential effectiveness in increasing equity in caregiving. Conclusions HIV/AIDS and human resources stakeholders must address occupational segregation and the underlying gender
Monin, Joan K.; Martire, Lynn M.; Schulz, Richard; Clark, Margaret S.
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. PMID:19186921
Williams, A Paul; Peckham, Allie; Kuluski, Kerry; Lum, Janet; Morton-Chang, Frances
While drawing on different perspectives, the insightful responses of our commentators all highlight the increasingly crucial role of informal, and mostly unpaid caregivers. They also raise key questions. The first question, "how should we refer to caregivers," pushes us to acknowledge the diversity of caregiver characteristics, contexts and roles. The second, "how should we understand the caregiver 'problem'," reminds us that although often thought of as an individual matter, caregiving is a public policy issue requiring broader systems thinking and approaches. The third, "what should we do about it," draws attention to the importance of building and strengthening social networks to support caregivers and bridge a "growing care gap." We offer the example of Japan which, as part of its national dementia care policy, is now encouraging the development of inter-generational dementia-friendly communities. PMID:26960243
Sanyal, Jaya; Das, Soumi; Ghosh, Epsita; Banerjee, T K; Bhaskar, L V K S; Rao, Vadlamudi Raghavendra
Aim was to analyze predictors of burden among primary caregivers (CGs) of Indian Parkinson's disease (PD) patients. 150 PD patients were administered using Unified Parkinson's Disease Rating Scale (UPDRS), Hoehn and Yahr Scale (H&Y), Montgomery Asberg Depression Rating Score (MADRS) and Mini Mental State Examination (MMSE) in this cross-sectional evaluation study. CG burden was assessed by Caregiver's Burden Scale (CBS), Hospital Anxiety and Depression Scale (HADS), SF-36 and 20-item Burden Assessment Schedule (BAS). Linear regression methods were used to evaluate factors contributing to burden and stress. Mean age of CG was 50.38±16.04 (range: 25-83 yrs). Marital status of CGs was noted to have significant relationship with CBS score (F=9.525, P<0.0001). Siblings (brother/sister) reported the highest CBS score while the wives reported the least. Correlations were strong between CBS and HADS anxiety (r=0.228, P=0.0048) and HADS depression (r=0.2172, P=0.0076). High correlations were found in caregiving duration, patients' stage of illness and motor disability among all the scales (CBS, HADS, SF36) determined. Step-wise regression analysis showed UPDRS (beta=1.364-0.202 ranging among all scales) and H&Y stages (beta=2.786-7.257) to have the strongest influence on CGs. CGs of patients with depression (MADRS: P=0.007 (SF36 mental) and dementia (MMSE: P=0.01) experienced greater stress. Social and financial status was disrupted in ~60% to 80% of the CGs. Motor imbalances with disability of PD patients and severity of disease are the main factors contributing to burden and stress in CGs. PMID:26382831
Punpanich, W.; Gorbach, P. M.; Detels, R.
Background Human immunodeficiency virus (HIV) infection impacts not only upon the physical health of affected children, but also their psychosocial functions, family relationships and economical status. Caregivers are confronted with complex challenges related to the physical, emotional and financial demands of raising these children.The purpose of this study was to enhance our understanding of the impact of HIV disease on both children's and caregivers' well-being, using a qualitative inquiry approach. Methods A total of 35 primary caregivers of HIV-infected children participated in in-depth interviews. The issues discussed included the major negative impacts on children's daily functioning and well-being, and the perceived caregiver/parental burden. Participants included parents (40%), grandparents (22.8%), other relatives (e.g. uncles, aunts) (34.3%) and one foster parent (2.8%). Results Qualitative analysis revealed that the major negative impacts of HIV/AIDS included physical symptoms, school performance and relationship changes. The major negative impacts on caregivers' well-being included acceptance of the diagnosis, dealing with the financial burden and keeping the diagnosis private. Conclusions Approaches are needed to address these challenges by enhancing families' coping skills and building supportive networks. PMID:21851376
Bien, Barbara; Wojszel, Beata; Sikorska-Simmons, Elzbieta
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…
van der Sanden, Remko L M; Stutterheim, Sarah E; Pryor, John B; Kok, Gerjo; Bos, Arjan E R
In this study, we explored stigma by association, family burden, and their impact on the family members of people with mental illness. We also studied the ways in which family members coped with these phenomena. We conducted semistructured interviews with 23 immediate family members of people with mental illness. Participants reported various experiences of stigma by association and family burden. Social exclusion, being blamed, not being taken seriously, time-consuming caregiving activities, and exhaustion appeared to be the predominant forms of stigma by association and family burden experienced by the participants. The participants used problem-focused and emotion-focused coping strategies, separately or simultaneously, to cope with the negative impact of stigma by association and family burden. The results suggest that family members should have access to services to address these problems. Social, instrumental, and emotional support should be given to family members by community members and mental health professionals. PMID:25198703
Syed Hassan, Syed Tajuddin; Jamaludin, Husna; Abd Raman, Rosna; Mohd Riji, Haliza; Wan Fei, Khaw
Context As with care giving and rehabilitation in chronic illnesses, the concern with traumatic brain injury (TBI), particularly with diffuse axonal injury (DAI), is that the caregivers are so overwhelmingly involved in caring and rehabilitation of the victim that in the process they become traumatized themselves. This review intends to shed light on the hidden and silent trauma sustained by the caregivers of severe brain injury survivors. Motor vehicle accident (MVA) is the highest contributor of TBI or DAI. The essence of trauma is the infliction of pain and suffering and having to bear the pain (i.e. by the TBI survivor) and the burden of having to take care and manage and rehabilitate the TBI survivor (i.e. by the TBI caregiver). Moreover many caregivers are not trained for their care giving task, thus compounding the stress of care giving and rehabilitating patients. Most research on TBI including DAI, focus on the survivors and not on the caregivers. TBI injury and its effects and impacts remain the core question of most studies, which are largely based on the quantitative approach. Evidence Acquisition Qualitative research can better assess human sufferings such as in the case of DAI trauma. While quantitative research can measure many psychometric parameters to assess some aspects of trauma conditions, qualitative research is able to fully reveal the meaning, ramification and experience of TBI trauma. Both care giving and rehabilitation are overwhelmingly demanding; hence , they may complicate the caregivers’ stress. However, some positive outcomes also exist. Results Caregivers involved in caring and rehabilitation of TBI victims may become mentally traumatized. Posttraumatic recovery of the TBI survivor can enhance the entire family’s closeness and bonding as well as improve the mental status of the caregiver. Conclusions A long-term longitudinal study encompassing integrated research is needed to fully understand the traumatic experiences of
He, Daifeng; McHenry, Peter
Using the Survey of Income and Program Participation, we examine the impact of formal employment on informal caregiving. We instrument for individual work hours with state unemployment rates. We find that, among women of prime caregiving ages (40-64 years), working 10% more hours per week reduces the probability of providing informal care by about 2 percentage points. The effects are stronger for more time-intensive caregiving and if care recipients are household members. Our results imply that work-promoting policies have the unintended consequence of reducing informal caregiving in an aging society. Copyright © 2015 John Wiley & Sons, Ltd. PMID:26017375
Williams, A Paul; Peckham, Allie; Kuluski, Kerry; Lum, Janet; Warrick, Natalie; Spalding, Karen; Tam, Tommy; Bruce-Barrett, Cindy; Grasic, Marta; Im, Jennifer
Informal and mostly unpaid caregivers - spouses, family, friends and neighbours - play a crucial role in supporting the health, well-being, functional independence and quality of life of growing numbers of persons of all ages who cannot manage on their own. Yet, informal caregiving is in decline; falling rates of engagement in caregiving are compounded by a shrinking caregiver pool. How should policymakers respond? In this paper, we draw on a growing international literature, along with findings from community-based studies conducted by our team across Ontario, to highlight six common assumptions about informal caregivers and what can be done to support them. These include the assumption that caregivers will be there to take on an increasing responsibility; that caregiving is only about an aging population; that money alone can do the job; that policymakers can simply wait and see; that front-line care professionals should be left to fill the policy void; and that caregivers should be addressed apart from cared-for persons and formal care systems. While each assumption has a different focus, all challenge policymakers to view caregivers as key players in massive social and political change, and to respond accordingly. PMID:26626112
de Schipper, Elles J.; Riksen-Walraven, J. Marianne; Geurts, Sabine A. E.; de Weerth, Carolina
The present study examined whether stress in professional caregivers--as reflected in salivary cortisol levels--is related to the quality of their caregiving behavior. The 221 professional female caregivers in 64 child care centers were observed in three different situations and saliva samples were taken three times during the morning. Results…
Jang, Yuri; Clay, Olivio J.; Roth, David L.; Haley, William E.; Mittelman, Mary S.
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…
Corcoran, Mary A.
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. Understanding…
Hebert, Randy S; Schulz, Richard; Copeland, Valire C; Arnold, Robert M
Many family caregivers are unprepared for the death of their loved one and may suffer from worse mental health as a result. We therefore sought to determine the factors that family caregivers believe are important to preparing for death and bereavement. Focus groups and ethnographic interviews were conducted with 33 family caregivers (bereaved or current) of terminally ill patients. The interviews were audiotaped, transcribed, and analyzed using the constant comparative method. Life experiences such as the duration of caregiving/illness, advance care planning, previous experiences with caregiving or death, and medical sophistication all impacted preparedness, or the degree to which a caregiver is ready for the death and bereavement. Regardless of life experiences, however, all caregivers reported medical, practical, psychosocial, and religious/spiritual uncertainty. Because uncertainty was multidimensional, caregivers often needed more than prognostic information in order to prepare. Communication was the primary mechanism used to manage uncertainty. Good communication included clear, reliable information, combined with relationship-centered care from health care providers. Finally, preparedness had cognitive, affective, and behavioral dimensions. To prepare, some caregivers needed information tailored to their uncertainty (cognitive), others needed to "mentally" or "emotionally" prepare (affective), and still others had important tasks to complete (behavioral). In order to better prepare family caregivers for the death of a loved one, health care providers must develop a trusting relationship with caregivers, provide them with reliable information tailored to their uncertainty, and allow time for caregivers to process the information and complete important tasks. PMID:18538977
Phillips, Linda R.; Reed, Pamela G.
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…
Cantin, Gilles; Plante, Isabelle; Coutu, Sylvain; Brunson, Liesette
Despite the importance of establishing meaningful parent-caregiver relationships, little is known about these dyadic relationships among beginning caregivers, who often feel insufficiently prepared to build successful alliances with parents. The present study examined the congruence between parents' and beginning caregivers' perceptions of their…
Schoeder, Chrystal Edge; Remer, Rory
The research on Tourette's disorder (TD), a neuropsychological disorder consisting of motor and phonic tics, has largely focused on individuals with TD and not on the caregivers of children with TD. We investigated the effects of several variables on caregiver strain of caregivers of children with TD, including perceived social support, caregiver…
Ornstein, Katherine; Gaugler, Joseph E.; Zahodne, Laura; Stern, Yaakov
Caregiving may be burdensome to caregivers, negatively affecting health and impacting decisions to institutionalize patients. It is unclear how caregiver depression changes over longer periods or whether heterogeneous trajectories for caregivers are apparent. The goals of this article are to characterize the course of depressive symptoms among caregivers over time and to examine the impact of baseline patient and caregiver characteristics on these trajectories. Patients with dementia and their caregivers were followed every 6 months for up to 6 years or until death (n = 133). Growth mixture modeling identified trajectories of caregiver depression over time. Most caregivers had stable trajectories of symptoms, with a smaller subset showing evidence of wear-and-tear. Patient clinical characteristics had no impact on symptom course for caregivers. Future work should utilize a longitudinal perspective and consider that there may be heterogeneous trajectories for caregivers. Those caregivers who follow a wear-and-tear trajectory may require targeted interventions to improve outcomes. PMID:24956922
Expert-reviewed information summary about the challenges faced by family caregivers of cancer patients. This summary focuses on typical caregiver roles and concerns, and helpful interventions for caregivers.
Russell, Bethany; Collins, Anna; Dally, Michael; Dowling, Anthony; Gold, Michelle; Murphy, Michael; Philip, Jennifer
The long-term survival of patients with adult high-grade glioma (HGG) remains poor, but for those who do live longer functional status and neurocognitive ability may be influenced by residual or recurrent tumour, or treatment-related complications. The aim of this review was to examine the current literature regarding the quality of life and experience of patients living longer with adult HGG and their caregivers, with a view to understanding the burden of treatment on patient abilities and deficits over time. Medline, PsychINFO and CINAHL databases were searched for the core concept of HGG in combination with an aspect of quality of long-term survival. Key findings of the 12 included studies were identified and synthesised thematically. There is a paucity of dedicated studies which have investigated the experiences of this cohort. The strength of existing literature is limited by the systematic exclusion of the poorest functioning patients and the under-representation of caregiver perspectives. Discrepancies in how patients view their quality of life were highlighted, despite consistent findings of significant physical and functional impairment. This review confirmed the presence of important differences between patient and caregiver views regarding patient abilities following treatment. Caregiver burden was found to be high, due to multiple dynamic and relentless stressors. The true experience of patients living longer with adult HGG and their caregivers remains unclear, particularly for patients with poorer neurocognitive and functional outcomes. Further research is required to clarify and replicate findings, explore discrepancies between patient and caregiver views, and to specifically investigate how caregiver needs and experiences may evolve over time. PMID:24980038
Gardiner, Clare; Brereton, Louise; Frey, Rosemary; Wilkinson-Meyers, Laura; Gott, Merryn
The economic burden faced by family caregivers of people at the end of life is well recognised. Financial burden has a significant impact on the provision of family care-giving in the community setting, but has seen limited research attention. A systematic review with realist review synthesis and thematic analysis was undertaken to identify literature relating to the financial costs and impact of family care-giving at the end of life. This paper reports findings relating to previously developed approaches which capture the financial costs and implications of caring for family members receiving palliative/end-of-life care. Seven electronic databases were searched from inception to April 2012, for original research studies relating to the financial impact of care-giving at the end of life. Studies were independently screened to identify those which met the study inclusion criteria, and the methodological quality of included studies was appraised using realist review criteria of relevance and rigour. A descriptive thematic approach was used to synthesise data. Twelve articles met the inclusion criteria for the review. Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. Methodological considerations include study design and method of administration, contextual and cultural relevance, and accuracy of cost
Badr, Hoda; Smith, Cardinale B.; Goldstein, Nathan E.; Gomez, Jorge; Redd, William H.
BACKGROUND Advanced lung cancer (LC) patients and their families report low self-efficacy for self-care/caregiving and high rates of distress, yet few programs exist to address their supportive care needs during treatment. OBJECTIVE This pilot study examined the feasibility, acceptability, and preliminary efficacy of a 6-session telephone-based dyadic psychosocial intervention that we developed for advanced LC patients and their caregivers. The program is grounded by Self-determination Theory (SDT), which emphasizes the importance of competence (self-efficacy), autonomy (sense of choice/volition), and relatedness (sense of belonging/connection) for psychological functioning. Primary outcomes were psychological functioning (depression/anxiety) and caregiver burden. Secondary outcomes were the SDT constructs of competence, autonomy, and relatedness. METHODS Thirty-nine advanced LC patients who were within one month of treatment initiation (baseline) and their caregivers (51% spouses/partners) completed surveys and were randomized to the intervention or usual medical care. Eight weeks post-baseline, they completed follow-up surveys. RESULTS Solid recruitment (60%) and low attrition rates demonstrated feasibility. Strong program evaluations (X̄=8.6 out of 10) and homework completion rates (88%) supported acceptability. Participants receiving intervention evidenced significant (p<.0001) improvements in depression, anxiety, and caregiver burden relative to usual medical care. Large effect sizes (d>1.2) favoring the intervention were also found for patient and caregiver competence and relatedness, and for caregiver autonomous motivation for providing care. CONCLUSION These findings support intervention feasibility, acceptability, and preliminary efficacy. By empowering families with skills to coordinate care and meet the challenges of LC together, this intervention holds great promise for improving palliative/supportive care services in cancer. PMID:25209975
Nishio, Midori; Ono, Mitsu
Objective: The number of male caregivers has increased, but male caregivers face several problems that reduce their quality of life and psychological condition. This study focused on the coping problems of men who care for people with dementia at home. It aimed to develop a coping scale for male caregivers so that they can continue caring for people with dementia at home and improve their own quality of life. The study also aimed to verify the reliability and validity of the scale. Patients/Material and Methods: The subjects were 759 men who care for people with dementia at home. The Care Problems Coping Scale consists of 21 questions based on elements of questions extracted from a pilot study. Additionally, subjects completed three self-administered questionnaires: the Japanese version of the Zarit Caregiver Burden Scale, the Depressive Symptoms and the Self-esteem Emotional Scale, and Rosenberg Self-Esteem Scale. Results: There were 274 valid responses (36.1% response rate). Regarding the answer distribution, each average value of the 21 items ranged from 1.56 to 2.68. The median answer distribution of the 21 items was 39 (SD = 6.6). Five items had a ceiling effect, and two items had a floor effect. The scale stability was about 50%, and Cronbach’s α was 0.49. There were significant correlations between the Care Problems Coping Scale and total scores of the Japanese version of the Zarit Caregiver Burden Scale, the Depressive Symptoms and Self-esteem Emotional Scale, and the Rosenberg Self-Esteem Scale. Conclusion: The answers provided on the Care Problems Coping Scale questionnaire indicated that male caregivers experience care problems. In terms of validity, there were significant correlations between the external questionnaires and 19 of the 21 items in this scale. This scale can therefore be used to measure problems with coping for male caregivers who care for people with dementia at home. PMID:26380589
Background Primary informal caregivers provide a substantial amount of the care and support for persons with Alzheimer’s disease (AD). This review aims to investigate the association between the quality of life (QoL) of primary informal AD caregivers and the level of care that these caregivers provide to persons with AD. Methods Studies involving primary informal caregivers of persons with AD will be included in the review. These studies will be required to focus on the care that caregivers provide for their loved ones. The primary outcome is level or quality of care. The main independent variable is caregiver QoL. In addition to QoL, we will include studies that examine other independent variables that are considered to be important components of QoL. These variables include social support, caregiver burden, caregiver wellbeing, and caregiver depression. We will search Medline-OVID, Embase-OVID, Cochrane Central-OVID, and PsycINFO-OVID from inception onwards. Two raters will independently screen each article using pre-established inclusion/exclusion criteria. Screening will take place at two levels: title and abstract, and full text. Conflicts will be resolved by discussion or by a third reviewer. We will assess the risk of bias of each included study using standardized quality assessment tools for specific types of designs. A narrative synthesis method will be used to describe our findings. Quantitative summary and meta-analysis will be conducted if appropriate. We will employ GRADE to evaluate the strength of the evidence in this review. Discussion Results of this systematic review will show whether and how caregiver QoL is related to the level of care that caregivers provide to persons with AD. PMID:23497507
Jack-Ide, Izibeloko O; Uys, Leana R; Middleton, Lyn E
Mental health services are provided at Rumuigbo Hospital, a single facility that renders psychiatric services in Rivers State and surrounding states in the Niger Delta region of Nigeria. Psychiatric services are not provided at primary health-care clinic or district hospitals, and access to this service can be problematic for many caregivers due to the time and costs involved. Therefore, this study explored the family caregiving experiences of persons with serious mental health problems in terms of the mental health-care policy and health systems environment. A qualitative study using a purposive sampling technique was conducted among 20 caregivers attending a neuropsychiatric clinic in Port Harcourt, Rivers State, Nigeria. The results show that 78% of caregivers lived outside Port Harcourt and 65% had no regular monthly income. Stigma, poor knowledge in managing symptoms of ill relatives, financial implications, lack of support network, and absence of community outreach clinics were found to affect family caregiving experiences. Policies need to be developed and implemented that provide mental health care through primary health-care services to ameliorate families' financial burden, enable early diagnosis and treatment, reduce the need to travel, and improve the quality of life of family caregivers. PMID:22712889
Background Bipolar disorder is associated with extreme mood symptoms, disability and suicide risk. Close family or friends often have a primary role in supporting an adult with bipolar disorder. However, not all support is helpful and there is little publicly accessible evidence-based information to guide caregivers. Caregiver burden increases the risk of caregiver depression and health problems. To help fill the information gap, expert clinicians, caregivers and consumers contributed to the development of guidelines for caregivers of adults with bipolar disorder using the Delphi consensus method. This paper reports on an evaluation of the acceptability and usefulness of the online version of the guidelines, http://www.bipolarcaregivers.org. Methods Visitors to the website responded to an initial online survey about the usefulness of the information (N = 536). A more detailed follow-up feedback survey was emailed to web users who were adult caregivers of adults with bipolar disorder a month later (N = 121). The feedback was analyzed quantitatively and qualitatively to establish user appraisals of the online information, whether and how caregivers applied the information and ways it could be improved. Results The majority of users (86.4% to 97.4%) found the various sections of the website useful. At follow-up, nearly 93% of caregivers reported that the information was relevant to them and 96% thought it would help others. Most respondents said that the information was supportive and encouraged adaptive control appraisals. However, a few respondents who were experiencing complex family problems, or who cared for a person with severe chronic bipolar disorder did not appraise it as positively. Nevertheless, over two-thirds of the caregivers reported using the information. Optional interactive features were recommended to maximize benefits. Conclusions Overall, http://www.bipolarcaregivers.org was appraised positively and used. It appears useful to close family
Fan, Stanley Lin-Sun; Sathick, Insara; McKitty, Khadija; Punzalan, Sally
Peritoneal dialysis is the archetypal home-based therapy and is often favoured by patients. However, as patients with end-stage renal failure become more elderly, with more co-morbidity, their dependence on carers to provide physical, emotional and logistical support increases. The effect of this chronic burden has not been systematically studied. We have prospectively studied patients with end-stage renal failure starting peritoneal dialysis and their carers over a 1-year period. We selected a cohort of caregivers that are actively involved with the care of their partners' dialysis. Quality of Life (QoL) assessed by SF-36 questionnaires showed the patients and carers had impairment of QoL at the start of dialysis. As expected, the baseline QoL Physical Component Scores highly correlated with co-morbidity and assessment of functional capacity. Scores of all QoL domains improved after 1 year and this reached statistical significance for social functioning for both patients and carers. When we compared carers of highly dependent patients (required to perform daily dialysis) with carers of less dependent patients, we noted that the former had a statistically significant worsening of their mental health but other parameters were not different. We have shown that despite increasing the burden for caregivers, with careful selection, education and support, we did not adversely impact on the QoL of carers whilst there was some evidence of improvement, especially in social functioning. This gives reassurance that establishing dependent patients on PD is compatible with a holistic approach to the patients and their families. PMID:18182410
Xie, Zhao; Burge, Russel; Yang, Yicheng; Du, Fen; Lu, Tie; Huang, Qiang; Ye, Wenyu; Xu, Weihua
Objectives. This study collected and evaluated data on the costs of outpatient medical care and family burden associated with osteoporosis-related fracture rehabilitation following hospital discharge in China. Materials and Methods. Data were collected using a patient questionnaire from osteoporosis-related fracture patients (N = 123) who aged 50 years and older who were discharged between January 2011 and January 2013 from 3 large hospitals in China. The survey captured posthospital discharge direct medical costs, indirect medical costs, lost work time for caregivers, and patient ambulatory status. Results. Hip fracture was the most frequent fracture site (62.6%), followed by vertebral fracture (34.2%). The mean direct medical care costs per patient totaled 3,910¥, while mean indirect medical costs totaled 743¥. Lost work time for unpaid family caregivers was 16.4 days, resulting in an average lost income of 3,233¥. The average posthospital direct medical cost, indirect medical cost, and caregiver lost income associated with a fracture patient totaled 7,886¥. Patients' ambulatory status was negatively impacted following fracture. Conclusions. Significant time and cost of care are placed on patients and caregivers during rehabilitation after discharge for osteoporotic fracture. It is important to evaluate the role and responsibility for creating the growing and inequitable burden placed on patients and caregivers following osteoporotic fracture. PMID:26221563
Xie, Zhao; Burge, Russel; Yang, Yicheng; Du, Fen; Lu, Tie; Huang, Qiang; Ye, Wenyu; Xu, Weihua
Objectives. This study collected and evaluated data on the costs of outpatient medical care and family burden associated with osteoporosis-related fracture rehabilitation following hospital discharge in China. Materials and Methods. Data were collected using a patient questionnaire from osteoporosis-related fracture patients (N = 123) who aged 50 years and older who were discharged between January 2011 and January 2013 from 3 large hospitals in China. The survey captured posthospital discharge direct medical costs, indirect medical costs, lost work time for caregivers, and patient ambulatory status. Results. Hip fracture was the most frequent fracture site (62.6%), followed by vertebral fracture (34.2%). The mean direct medical care costs per patient totaled 3,910¥, while mean indirect medical costs totaled 743¥. Lost work time for unpaid family caregivers was 16.4 days, resulting in an average lost income of 3,233¥. The average posthospital direct medical cost, indirect medical cost, and caregiver lost income associated with a fracture patient totaled 7,886¥. Patients' ambulatory status was negatively impacted following fracture. Conclusions. Significant time and cost of care are placed on patients and caregivers during rehabilitation after discharge for osteoporotic fracture. It is important to evaluate the role and responsibility for creating the growing and inequitable burden placed on patients and caregivers following osteoporotic fracture. PMID:26221563
Milbury, Kathrin; Mallaiah, Smitha; Lopez, Gabriel; Liao, Zhongxing; Yang, Chunyi; Carmack, Cindy; Chaoul, Alejandro; Spelman, Amy; Cohen, Lorenzo
BACKGROUND Although yoga practice may improve quality of life (QOL) in cancer patients, feasibility in patients with lung cancer is largely unknown. Moreover, previous research has excluded patients’ family caregivers. Because caregivers are vulnerable to caregiver burden, a dyadic approach targeting QOL in both patient and caregiver may be particularly beneficial. Thus, the purpose of this study was to establish the feasibility of a couple-based Vivekananda Yoga (VKC) intervention in lung cancer patients and caregivers. Vivekananda Yoga may be suitable for a dyadic approach and address the multifaceted needs (e.g., emotional, physical, spiritual, and social) common among families coping with lung cancer. METHOD In this single-arm feasibility trial, patients with lung cancer undergoing radiotherapy and their caregivers participated in a 15-session VKC program focused on the interconnectedness of the dyad. The program consisted of four main components: 1) joint loosening with breath synchronization; 2) postures (asanas) and a deep relaxation technique; 3) breath energization (pranayama) with sound resonance; and 4) meditation. We assessed pre/post-intervention levels of fatigue (BFI), sleep disturbances (PSQI), psychological distress (BSI), overall mental and physical QOL (SF-36), spirituality (FACT-Sp) and relational closeness. We also tracked feasibility data, and participants completed program evaluations. RESULTS We approached 28 eligible dyads of which 15 (53%) consented and 9 (60%) completed the intervention. No adverse events were reported. Patients (mean age: 73 years, 63% female, all stage III) and caregivers (mean age: 62 years, 38% female, 63% spouses) completed a mean of 10 sessions (range: 4–14) and 95.5% of them rated the program as very useful. Paired t-tests revealed a significant increase in patients’ mental health (d=.84, P=.04) and a significant decrease in caregivers’ sleep disturbances (d=1.44, P=.02). Although not statistically
Llanque, Sarah; Savage, Lynette; Rosenburg, Neal; Honor’s, BA; Caserta, Michael
AIM The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer’s disease and related dementias. BACKGROUND Currently, there are more than 15 million unpaid care-givers for persons suffering from Alzheimer’s disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. METHOD The paper incorporates the modified method of Wilson’s concept analysis procedure to analyze the concept of caregiver stress. DATA SOURCES A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. RESULTS A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. CONCLUSIONS The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper. PMID:24787468
Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo
Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. PMID:26527229
Eder, Rebecca A.
Preschool children's knowledge of adult caregiving behaviors was examined with a sample of 14 middle-class, Caucasian boys and girls between the ages of 24 and 27 months. Each child's caregiving behavior in a laboratory environment containing dolls, toy animals, and toy objects, while accompanied by his or her mother, was recorded independently by…
The perception of the work of a caregiver in geriatrics is often inaccurate. Considered to consist of the most unrewarding tasks, the role of caregivers in supporting residents and families is however essential, both in terms of day-today care as well as for the prevention of dependency. PMID:22741315
Intended for use in conjunction with videos illustrating key concepts and caregiving techniques, this guide focuses on how the daily routines of caring for infants and toddlers can become opportunities for promoting the child's learning and development and for deepening the relationship between child and caregiver. Special attention is given to…
Zarit, Steven; Femia, Elia
Gerontologic research in the past 40 years has shown that caring for an older, disabled person affects the health and well-being of the caregiver. This important contribution led to a wide range of programs and services designed to buffer caregivers from the effects of stressors. Many of these programs have been quite innovative. Although…
Sawyer, Brook E.; Campbell, Philippa H.
Relatively little is known about the role of early interventionists as teachers of caregivers. The current study was conducted to better understand interventionists' perspectives about teaching caregivers. A national sample of 1,525 multidisciplinary interventionists completed an online questionnaire, which elicited information about…
Fuhr, Patti; Martinez, Bethany; Williams, Michael
Persons who are elderly, visually impaired, and primary caregivers for ailing or disabled spouses or significant others are a unique population that has not been studied previously. By definition, "informal caregivers" are family members or friends who provide unpaid day-to-day assistance with activities of daily living and are familiar with the…
Cole, Susan A.; Eamon, Mary Keegan
Objectives: The main purposes of this study were to determine (1) the prevalence of depressive symptoms among foster caregivers, (2) the social-demographics, risk factors, and social support predicting depressive symptoms, and (3) whether social support buffered the effects of the risk factors in the Illinois Foster Caregivers Study. Method:…
Bass, David M.; And Others
Describes selected characteristics of 146 terminal patients enrolled in a home-based hospice program and similar characteristics of the patients' primary caregivers. Examines relationships between the characteristics of patients and caregivers and relationships between these characteristics and the rate at which various services were utilized.…
Bornstein, Marc H.; Putnick, Diane L.
Enriching caregiving practices foster the course and outcome of child development. This study examined 2 developmentally significant domains of positive caregiving--cognitive and socioemotional--in more than 127,000 families with under-5 year children from 28 developing countries. Mothers varied widely in cognitive and socioemotional caregiving…
One third of the world's population is latently infected with Mycobacterium tuberculosis, and with the lifestyle changes succeeding the on-going urbanization, populations already burdened by tuberculosis are experiencing a dramatic increase in chronic diseases, with diabetes being a serious challenge. Tuberculosis and diabetes are not only becoming co-existing diseases. In fact, the diseases interact, and there is evidence to suggest that especially diabetes disease increases the susceptibility for developing active tuberculosis disease. Furthermore, it is plausible that tuberculosis leads to, either transient or permanent, impairment of the glucose metabolism, which ultimately will turn into diabetes. A number of studies from the Americas, Europe, Asia, and, most lately, from sub-Saharan Africa have reported strong association between tuberculosis and diabetes; on average, the estimated risk of active tuberculosis is thrice as high among people with diabetes. The study from sub-Saharan Africa was conducted in Tanzania and is the basis of this thesis. Based on available evidence on the association between tuberculosis and diabetes, the primary aim of the study was to assess the role of diabetes for tuberculosis risk, manifestations, treatment outcomes and survival in a Tanzanian population of tuberculosis patients and non-tuberculosis neighbourhood controls. The study was conducted in Mwanza City in northern Tanzania, with a population exceeding half a million inhabitants, with tuberculosis and HIV being common infections in the region, but with little knowledge about the prevalence of diabetes. We recruited newly diagnosed pulmonary tuberculosis patients from spring 2006 and continuously till the fall 2009, with all participating in a nutritional intervention running in parallel with the medical tuberculosis treatment. All participants underwent diabetes and HIV testing as well as a series of measurements such as anthropometric, clinical and paraclinical
Miyawaki, Christina E
This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults. PMID:26810575
Recent studies demonstrated that family members of a cancer patient show as much or even higher psychological distress as the cancer patients themselves. There are several reasons for psychological distress among family members. The family of the cancer patient is expected to provide patient care. There are shared responsibilities for decision-making, providing concrete care-giving, meeting the financial and social costs, maintaining stability and adapting to change. In addition, some family caregivers are involved in direct patient care. These responsibilities place both physical and emotional burdens on the family members. It has been shown that spouses demonstrate levels of emotional and functional disruption as great or greater than that of the patient and that these problems often worsen with time, independent of the patient's mood or health. Health problems of caregivers have a very important influence on their ability to meet these demands and it is reported that care-giving affects the physical health of spouse caregivers. Some caregivers may be physically weak or sick, and some may also demonstrate symptoms of cancer. Based on these findings, family members of the cancer patient are called "second-order patients". Therefore, various kinds of care programs are needed to provide support for family members and such interventions are aimed at psychiatric, physical, socio-economic problems. Bereavement is one of the most striking events in human experience. Although bereavement is not a disease, it is associated with excess risk of mortality and morbidity. Bereaved individuals show various physical and psychological symptoms and some of the bereaved individuals develop psychiatric disorders such as bereavement reaction, major depression and post-traumatic stress disorder. Therefore, psychiatric interventions are needed for these bereaved individuals. In the bereavement care clinic, interventions are aimed at psychiatric, physical, socio-economical problems
Samson, Zoe Blake; Parker, Monica; Dye, Clinton; Hepburn, Kenneth
Dementia family caregivers display significant rates of psychological and physical symptoms. African Americans (AAs) are disproportionately affected by dementia. African American caregivers display unique patterns of symptomology and responses to interventions designed to promote caregiver well-being. This study analyzed qualitative focus group data from 32 AA caregivers to explore how issues of race and culture may be incorporated into a culturally sensitive intervention for AA dementia family caregivers. Caregivers were asked scripted questions about their caregiving experiences and to suggest alterations to an existing psychoeducation program. Analysis revealed 4 key themes: the tradition of family care, caregiving and caregiving issues, culturally appropriate care, and navigating without a map. Suggestions for an educational program included a focus on developing caregiver skills and knowledge for caregiving, promotion of self-care, and reflection on the AA family and community as resources for care. PMID:26953236
Czaja, Sara J.; Gitlin, Laura N.; Schulz, Richard; Zhang, Song; Burgio, Louis D.; Stevens, Alan B.; Nichols, Linda O.; Gallagher-Thompson, Dolores
Objectives Family caregivers play a significant role in the health care of patients with dementia yet their needs and health status are often overlooked. This study developed and validated a brief screening measure for use in research, health care and community settings to systematically assess well-being and identify needed areas of support for caregivers of patients with dementia. Design This study used data from Resources for Enhancing Alzheimer’s Caregiver Health (REACH II), a multi-site, randomized, clinical trial of a behavioral intervention designed to improve the quality of life of caregivers in multiple domains. PARTICIPANTS: Two-hundred and twelve Hispanic, 211 Black/African American and 219 White family community dwelling dementia caregiver dyads providing in-home care to patients with dementia. Measurement Based on conceptual and psychometric analyses, a 16-item measure was developed that taps six domains linked to caregiver risk and amenable to intervention: depression, burden, self-care and health behaviors, social support, safety, and patient problem behaviors. The reliability and validity of the instrument was evaluated with 642 dementia caregiver dyads from the REACH II program. Results The measure was found to have acceptable internal consistency for a multi-dimensional scale and similar measurement properties for each of the racial/ethnic groups. Concurrent validity was also demonstrated for the measure. Conclusion The REACH Risk Appraisal Measure (RAM) developed in this study shows promise as an assessment tool that can be used in research, clinical and community settings to guide, prioritize, and target needed areas of support for caregivers of patients with dementia. PMID:19453305
Tsai, Chia-Fen; Lee, Yao-Tung; Lee, Wei-Ju; Hwang, Jen-Ping; Wang, Shuu-Jiun; Fuh, Jong-Ling
Background Family caregivers may not agree with patients with dementia regarding attitudes toward end-of-life preferences, and the effects of this type of disagreement are not well understood. This study sought to identify such a disagreement and its predictors. Methods A cross-sectional sample of 84 family caregivers and patients with dementia was recruited from memory clinics. We used the Mini-Mental State Examination, Neuropsychiatric Inventory, Clinical Dementia Rating, and Katz index of independence in activities of daily living to assess patient symptoms, functions, and severity of dementia. Caregivers completed questionnaires on perceived patient end-of-life care preferences, caregiver end-of-life care preferences for patients, Zarit Burden Interview (ZBI), Center for Epidemiological Studies–Depression Scale (CES-D), and knowledge of clinical complications of advanced dementia. Results The self-disclosure rates of patient preferences were 34.5% for tube feeding, 39.3% for cardiopulmonary resuscitation, and 45.2% for mechanical ventilation. For patients who had disclosed preferences, the disagreement rate between them and their caregivers was 48.3% for tube feeding, 48.5% for cardiopulmonary resuscitation, and 60.3% for mechanical ventilation. Caregiver depression (i.e., CES-D ≥16) was associated with disagreements on cardiopulmonary resuscitation (adjusted odds ratio (aOR) = 6.6, 95% CI = 1.4–31.1, P = 0.01) and mechanical ventilation (aOR = 14, 95% CI = 2.2–87.2, P = 0.005) preferences. Conclusion The preferences of end-of-life issues differed greatly between dementia patients and their caregivers. Depression in caregivers is associated with such discrepancy. PMID:26230958
Bidwell, Julie T; Vellone, Ercole; Lyons, Karen S; D'Agostino, Fabio; Riegel, Barbara; Juárez-Vela, Raúl; Hiatt, Shirin O; Alvaro, Rosaria; Lee, Christopher S
Disease self-management is a critical component of maintaining clinical stability for patients with chronic illness. This is particularly evident in the context of heart failure (HF), which is the leading cause of hospitalization for older adults. HF self-management, commonly known as HF self-care, is often performed with the support of informal caregivers. However, little is known about how a HF dyad manages the patient's care together. The purpose of this study was to identify determinants of patient and caregiver contributions to HF self-care maintenance (daily adherence and symptom monitoring) and management (appropriate recognition and response to symptoms), utilizing an approach that controls for dyadic interdependence. This was a secondary analysis of cross-sectional data from 364 dyads of Italian HF patients and caregivers. Multilevel modeling was used to identify determinants of HF self-care within patient-caregiver dyads. Patients averaged 76.2 (SD = 10.7) years old, and a slight majority (56.9%) was male, whereas caregivers averaged 57.4 (SD = 14.6) years old, and about half (48.1%) were male. Most caregivers were adult children (48.4%) or spouses (32.7%) of patients. Both patients and caregivers reported low levels of HF maintenance and management behaviors. Significant individual and dyadic determinants of self-care maintenance and self-care management included gender, quality of life, comorbid burden, impaired ADLs, cognition, hospitalizations, HF duration, relationship type, relationship quality, and social support. These comprehensive dyadic models assist in elucidating the complex nature of patient-caregiver relationships and their influence on HF self-care, leading to more effective ways to intervene and optimize outcomes. PMID:26355702
Powell-Cope, G M; Brown, M A
Images of AIDS invoke fears of contagion, disability and formidable death, and moral overtones directed toward drug use, sexuality and sexual identity and freedom. Responses to these images are both private and public, and have profound consequences for individuals whose lives have been touched by the disease, both the person with AIDS and the family caregiver. The purpose of this paper is to analyze in detail 'going public,' one category of a substantive theory of AIDS family caregiving. This category was developed from a grounded theory study of 53 AIDS family members who were asked to describe their experiences as an AIDS family caregiver during an indepth interview. Data were content analyzed using constant comparative analysis. Going public referred to how AIDS family caregivers let others known that they were caring for a PWA. Specifically, going public entailed selecting appropriate persons and audiences to tell, formulating approaches to communicating information, and considering the risks and benefits of the possible choices. The description of going public as an AIDS family caregiver details the assertiveness involved in political action and social change, contrasted with the isolation and secrecy involved in maintaining relationships with others under the condition of a stigmatizing illness. Data revealed a particular emphasis on the phenomenon of 'guilt by association'. Because of their close relationship to a person with AIDS, caregivers were obligated to share the stigma of AIDS and were likewise discredited. Findings from our study emphasize the tremendous personal suffering experienced by caregivers which was associated with AIDS stigma in the form of rejection, loss of friends and harassment. Data also revealed the strong commitment of many caregivers to social activism which ranged from participating in educational efforts to marching in demonstrations. The rationale for the apparent increased activism among AIDS family caregivers compared to
Sampson, Natalie R; Parker, Edith A; Cheezum, Rebecca R; Lewis, Toby C; O'Toole, Ashley; Zuniga, Adriana; Patton, Jean; Robbins, Thomas G; Keirns, Carla C
Low-income caregivers of children with asthma experience multiple stressors, likely worsening family health. As part of Community Action Against Asthma's community-based participatory research partnership, researchers conducted 40 qualitative semi-structured interviews and quantitative surveys with low-income caregivers of children with asthma in Detroit, Michigan. Participants described daily childhood asthma experiences and completed scales including the Peds Quality of Life Family Impact Module and Zarit Burden Caregiver Scale. Quantitative scale findings suggested participants are moderately stressed or affected by their child's illness. While there was some accordance between qualitative and quantitative findings, qualitative findings additionally captured many relevant life stressors, seemingly overlooked or conflated in scale responses. Many participants described asthma as part of childrearing, rather than as a stressor or burden. Findings encourage improvement of clinical, psychometric assessments used to measure and address stressors that shape health for many families with children with asthma. PMID:23377734
Marinova-Schmidt, Velislava; Setzer, Manuela; Kondylakis, Haridimos; Griebel, Lena; Sedlmayr, Martin; Graessel, Elmar; Maler, Juan Manuel; Kirn, Stefan; Kolominsky-Rabas, Peter L
Background The European eHealthMonitor project (eHM) developed a user-sensitive and interactive Web portal for the dementia care setting called the eHM Dementia Portal (eHM-DP). It aims to provide targeted support for informal caregivers of persons with dementia and professionals. Objective The objective of this study was to assess the usefulness and impact of the eHM-DP service in the dementia care setting from two user perspectives: informal caregivers and professionals. Methods The evaluation study was conducted from June to September 2014 and followed a before-after, user-participatory, mixed-method design with questionnaires and interviews. The used intervention was the eHM-DP: an interactive Web portal for informal caregivers and professionals that was tested for a 12-week period. Primary outcomes for caregivers included empowerment, quality of life, caregiver burden, decision aid, as well as perceived usefulness and benefits of the eHM-DP. Primary outcomes for professionals involved decision aid, perceived usefulness, and benefits of the eHM-DP. Results A total of 25 informal caregivers and 6 professionals used the eHM-DP over the 12-week study period. Both professionals and informal caregivers indicated perceived benefits and support by the eHM-DP. In total, 65% (16/25) of informal caregivers would use the eHM-DP if they had access to it. Major perceived benefits were individualized information acquisition, improved interaction between informal caregivers and professionals, access to support from home, and empowerment in health-related decisions (PrepDM Score: 67.9). Professionals highlighted the improved treatment and care over the disease course (83%, 5/6) and improved health care access for people living in rural areas (67%, 4/6). However, there was no improvement in caregiver burden (Burden Scale for Family Caregivers) and quality of life (EuroQol-5D-5L) over the study period. Conclusions Our study provides insight into the different user perspectives
Choi, JiYeon; Sherwood, Paula R.; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P.; Given, Barbara; Hoffman, Leslie A.
Objective To examine trajectories of depressive symptoms in caregivers of critically ill adults from ICU admission to 2 months post-ICU discharge and explore patient and caregiver characteristics associated with differing trajectories. Design Longitudinal descriptive Setting Medical ICU in a tertiary university hospital Subjects 50 caregivers and 47 patients on mechanical ventilation for ≥ 4 days Intervention None Measurements and Main Results Caregivers completed measures assessing depressive symptoms (Short version Center for Epidemiologic Studies-Depression Scale 10-items [shortened CES-D]), burden (Brief Zarit Burden Interview [Zarit-12]) and health risk behaviors (caregiver health behaviors) during ICU admission, at ICU discharge and 2 months post-ICU discharge. Group-based trajectory analysis was used to identify patterns of change in shortened CES-D scores over time. Two trajectory groups emerged: 1) caregivers who had clinically significant depressive symptoms (21.0 ± 4.1) during ICU admission that remained high (13.6 ± 5) at 2 months post-ICU discharge (high trajectory group, 56%) and 2) caregivers who reported scores that were lower (10.6 ± 5.7) during ICU admission and decreased further (5.7 ± 3.6) at 2 months post-ICU discharge (low trajectory group, 44%). Caregivers in the high trajectory group tended to be younger, female, adult child living with financial difficulty and less likely to report a religious background or preference. More caregivers in the high trajectory group reported greater burden and more health risk behaviors at all time points; patients tended to be male with poorer functional ability at ICU discharge. Caregivers’ responses during ICU admission did not differ in regard to number of days patients being on mechanical ventilation prior to enrollment. Conclusion Findings suggest two patterns of depressive symptom response in caregivers of critically ill adults on mechanical ventilation from ICU admission to two months post
... week. If you're caring for someone with mental problems like Alzheimer's disease it can be especially difficult. Support groups can help. Dept. of Health and Human Services Office on Women's Health
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Junius-Walker, Ulrike; Wiese, Birgitt; Klaaßen-Mielke, Renate; Theile, Gudrun; Müller, Christiane Annette; Hummers-Pradier, Eva
Background Older patients often experience the burden of multiple health problems. Physicians need to consider them to arrive at a holistic treatment plan. Yet, it has not been systematically investigated as to which personal burdens ensue from certain health conditions. Objective The objective of this study is to examine older patients’ perceived burden of their health problems. Patients and methods The study presents a cross-sectional analysis in 74 German general practices; 836 patients, 72 years and older (mean 79±4.4), rated the burden of each health problem disclosed by a comprehensive geriatric assessment. Patients rated each burden using three components: importance, emotional impact, and impact on daily activities. Cluster analyses were performed to define patterns in the rating of these components of burden. In a multilevel logistic regression analysis, independent factors that predict high and low burden were explored. Results Patients had a median of eleven health problems and rated the burden of altogether 8,900 health problems. Four clusters provided a good clustering structure. Two clusters describe a high burden, and a further two, a low burden. Patients attributed a high burden to social and psychological health problems (especially being a caregiver: odds ratio [OR] 10.4, 95% confidence interval [CI] 4.4–24.4), to specific symptoms (eg, claudication: OR 2.3, 95% CI 1.3–4.0; pain: OR 2.3, 95% CI 1.6–3.1), and physical disabilities. Patients rated a comparatively low burden for most of their medical findings, for cognitive impairment, and lifestyle issues (eg, hypertension: OR 0.2, 95% CI 0.2–0.3). Conclusion The patients experienced a relatively greater burden for physical disabilities, mood, or social issues than for diseases themselves. Physicians should interpret these burdens in the individual context and consider them in their treatment planning. PMID:26124648
Croog, S H; Sudilovsky, A; Burleson, J A; Baume, R M
This study assessed relationships between problem behaviors in 199 Alzheimer Disease patients and vulnerability factors in the well being and emotional health of their spouse caregivers. Among caregiver wives and the younger caregiver husbands (64 years old and under) the volume of patient problem behavior was significantly negatively associated with total scores on a summary well being measure. The association was not found within the older husband caregiver group. Considering five subdimensions of the summary well being scale (Anxiety, Depressive Symptoms, Positive Well Being, Vitality and General Health), correlational analyses showed that the total patient problems measure appeared to have impact primarily among wife caregivers, particularly those 64 years old and under. Multiple regression analyses showed that one patient problem behavior category, Emotional Lability, was the single strongest predictor of impaired well being of the caregiver among all five subdimensions of the caregiver well being measure. Although Destructive Behavior of the patient was not significant by itself, an Age by Destructive Behavior interaction showed that high levels of patient Destructive Behavior predicted high levels of Depression, Anxiety, and low levels of Positive Well Being more among younger caregivers. Husband caregivers had significantly higher Anxiety scores than wife caregivers. These findings document how particular patient problem behaviors can affect caregivers. They point up as well how both gender and age may help target which caregivers are most vulnerable to the stress of specific Alzheimer patient behavior problems. They also suggest the utility of examining specific dimensions of well being rather than a total score alone for purposes of understanding the relationship of particular patient behavior problems to caregiver emotional and physical health. PMID:11723371
Pasvogel, Alice; Hepworth, Joseph T.; Koerner, Kari
A two-group randomized controlled trial tested a telenovela intervention (a culturally congruent videotaped dramatization with guided dialogue) to increase Mexican American elders’ and family caregivers’ awareness of and confidence in home health care services (HHCS), thereby increasing use of HHCS and improving elders’ and caregivers’ outcomes. Both groups had significant increases in awareness of and confidence in HHCS. The intervention group used HHCS more than the control group (91.1% versus 71.2% of total visits authorized) although this was not a statistically significant difference (p=.18). Use of HHCS was associated with increased elders’ and caregivers’ mutuality (the quality of the elder-caregiver relationship), and decreased caregiving burden and caregiver depression. The predictive role and measurement of awareness and ways to improve the intervention are discussed. Findings are especially important with today’s focus on transitional care to keep elders at home and prevent unnecessary readmissions. PMID:25594360
Pinquart, Martin; Sörensen, Silvia
The present meta-analysis integrates the results from 168 empirical studies on differences between caregiving spouses, adult children, and children-in-law. Spouses differ from children and children-in-law significantly with regard to sociodemographic variables; also, they provide more support but report fewer care recipient behavior problems. Spouse caregivers report more depression symptoms, greater financial and physical burden, and lower levels of psychological well-being. Higher levels of psychological distress among spouses are explained mostly—but not completely—by higher levels of care provision. Few differences emerge between children and children-in-law, but children-in-law perceive the relationship with the care recipient as less positive and they report fewer uplifts of caregiving. PMID:21417538
Menon, Manoj P; Njau, Joseph D; McFarland, Deborah A
Fever is a major cause of morbidity and mortality among children under 5 years of age in resource-limited countries. Although prevention and treatment of febrile illnesses have improved, the costs--both financial and nonfinancial--remain barriers to care. Using data from the 2009 Uganda Malaria Indicator Survey, we describe the costs associated with the care of a febrile child and assess predictors of care-seeking behavior. Over 80% of caregivers sought care for their febrile child, however less than half did so on either the day of or the day after the development of fever. The odds of seeking care decreased with each additional month of the child's age. Caregivers living in rural areas were more likely to seek care, however were less likely to seek care promptly. Caregivers with at least a primary school education and those familiar with the protective effect of bed nets and the need to seek care promptly were more likely to seek care. Despite government assistance, the majority of caregivers did incur costs (mean 13,173 Ugandan shilling; $6.84 U.S. dollars) associated with medical care. Continued efforts targeting barriers to seeking care, including the economic burden, are necessary. PMID:26880780
Lala, Sanjay G.; Little, Kristen M.; Tshabangu, Nkeko; Moore, David P.; Msandiwa, Reginah; van der Watt, Martin; Chaisson, Richard E.; Martinson, Neil A.
Background Contact tracing, to identify source cases with untreated tuberculosis (TB), is rarely performed in high disease burden settings when the index case is a young child with TB. As TB is strongly associated with HIV infection in these settings, we used source case investigation to determine the prevalence of undiagnosed TB and HIV in the caregivers and household contacts of hospitalised young children diagnosed with TB in South Africa. Methods Caregivers and household contacts of 576 young children (age ≤7 years) with TB diagnosed between May 2010 and August 2012 were screened for TB and HIV. The primary outcome was the detection of laboratory-confirmed, newly-diagnosed TB disease and/or HIV-infection in close contacts. Results Of 576 caregivers, 301 (52·3%) self-reported HIV-positivity. Newly-diagnosed HIV infection was detected in 63 (22·9%) of the remaining 275 caregivers who self-reported an unknown or negative HIV status. Screening identified 133 (23·1%) caregivers eligible for immediate anti-retroviral therapy (ART). Newly-diagnosed TB disease was detected in 23 (4·0%) caregivers. In non-caregiver household contacts (n = 1341), the prevalence of newly-diagnosed HIV infection and TB disease was 10·0% and 3·2% respectively. On average, screening contacts of every nine children with TB resulted in the identification of one case of newly-diagnosed TB disease, three cases of newly diagnosed HIV-infection, and three HIV-infected persons eligible for ART. Conclusion In high burden countries, source case investigation yields high rates of previously undiagnosed HIV and TB infection in the close contacts of hospitalised young children diagnosed with TB. Furthermore, integrated screening identifies many individuals who are eligible for immediate ART. Similar studies, with costing analyses, should be undertaken in other high burden settings–integrated source case investigation for TB and HIV should be routinely undertaken if our findings are confirmed
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Rose, Miriam S; Noelker, Linda S; Kagan, Jill
This paper provides a template for the decade ahead regarding the delivery, supply, and funding of caregiver respite services. Policy changes are needed to address these issues as concerns about our country's ability to meet future caregiving needs are growing along with our aging population. Federal initiatives and state-level policies and programs affecting respite are reviewed and directions for policy advancement are highlighted. Much more work is needed to educate caregivers and the general public about the necessity for respite beginning early in the caregiving career to prevent burnout and other adverse effects. Because it is unlikely that there will be a sufficient number of direct-care workers to replace unpaid caregivers, improved policies are needed to ensure that their situation is sustainable through increased availability of high-quality respite and other services vital to caregiver health and well-being. Among the 2015 White House Conference on Aging's priorities in the next decade, policies on long-term services and supports will require focused attention on family caregivers and the direct-care workforce to strengthen their ability to give care now and support their own physical, emotional, and financial needs in the future. PMID:26035607
This case report shares a nursing experience assisting a caregiver of a patient with a head injury to reduce her stressors. The period of care ran from November 4 to January 7, 2008. The author collected subjective and objective data through observations and interviews with the caregiver using the Neuman systemic model in a hospital intensive care unit. Data was analyzed to identify key healthcare problems, which included anxiety, caregiver role strain and changes in family dynamics. The stressors involved in each were applied to the above nursing problems in order to deliver individualized nursing care to the caregiver based on mutual trust. Such transferred care skills, taught the caregiver how to face main stressors, decreased anxiety, and helped the caregiver build up her confidence and ability to take care of her daughter. Such was complemented by leveraging hospital and external resources, which helped the caregiver solve problems and improve family dynamics during the crisis. The approach helped the entire family adjust and reorient. PMID:20405402
Ito, Mikiko; Kutsumi, Masami; Mikami, Hiroshi
Background Gender differences in spousal caregivers and their relationship to care experiences, social demographics, and caregivers’ depression were examined. Methods 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. Results 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. Conclusions 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. PMID:19176486
Chen, Ya-Mei; Hedrick, Susan C.; Young, Heather M.
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…
Nichols, Linda O.; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J.; Zuber, Jeffrey
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)…
Ghazvini, Alisa S.; Readdick, Christine, A.
Investigated the relationship between parent-caregiver communication and child care quality in 12 child care centers representing different types of sponsorship. Compared to parents, caregivers rated all forms of parent-caregiver communication as more frequent and as more important. Frequency of parent-caregiver communication and quality of child…
Chhagan, Meera K.; Mellins, Claude A.; Kauchali, Shuaib; Craib, Murray H.; Taylor, Myra; Kvalsvig, Jane D.; Davidson, Leslie L.
Objectives Given the existing evidence linking parental depression with infant and early child development, our aim was to describe the burden of mental health disorders among caregivers of young children aged 4–6 years living in an environment of poverty and high HIV seroprevalence. Methods We analyzed baseline data from an epidemiologic study of the health and psychosocial needs of preschool-aged children. Primary caregivers of index children recruited from a household survey were screened for common mental disorders using the Client Diagnostic Questionnaire (CDQ). Sociodemographic, HIV and general health surveys were also conducted. Results Many caregivers (449/1434; 31.3%) screened positive for at least one psychiatric disorder on the CDQ, with post-traumatic-stress-disorder being the most common. Caregivers who screened positive for any disorder were more likely to be older, to have no individual sources of income and to have less formal education. Presence of a disorder was also significantly associated with lower employment levels within the household and death of a young child within the household. Known HIV-infected caregivers were more likely to have any mood disorder than caregivers who previously tested negative. Conclusions The data support the need for mental health treatment interventions in South Africa, particularly interventions directed at PTSD and depression, and that take into account the high burden of poverty, HIV and childhood mortality. Given the limited formal mental health structure in South Africa to address these highly prevalent disorders; community-based mental health supports, available through decentralized health systems many be critical to delivering accessible interventions. PMID:23467845
Salhi, Carmel; Hann, Katrina; Kellie, Jim; Kamara, Alimamy; Salomon, Joshua A; Kim, Jane J; Betancourt, Theresa S
Abstract Objective To measure the benefits to household caregivers of a psychotherapeutic intervention for adolescents and young adults living in a war-affected area. Methods Between July 2012 and July 2013, we carried out a randomized controlled trial of the Youth Readiness Intervention – a cognitive–behavioural intervention for war-affected young people who exhibit depressive and anxiety symptoms and conduct problems – in Freetown, Sierra Leone. Overall, 436 participants aged 15–24 years were randomized to receive the intervention (n = 222) or care as usual (n = 214). Household caregivers for the participants in the intervention arm (n = 101) or control arm (n = 103) were interviewed during a baseline survey and again, if available (n = 155), 12 weeks later in a follow-up survey. We used a burden assessment scale to evaluate the burden of care placed on caregivers in terms of emotional distress and functional impairment. The caregivers’ mental health – i.e. internalizing, externalizing and prosocial behaviour – was evaluated using the Oxford Measure of Psychosocial Adjustment. Difference-in-differences multiple regression analyses were used, within an intention-to-treat framework, to estimate the treatment effects. Findings Compared with the caregivers of participants of the control group, the caregivers of participants of the intervention group reported greater reductions in emotional distress (scale difference: 0.252; 95% confidence interval, CI: 0.026–0.4782) and greater improvements in prosocial behaviour (scale difference: 0.249; 95% CI: 0.012–0.486) between the two surveys. Conclusion A psychotherapeutic intervention for war-affected young people can improve the mental health of their caregivers. PMID:26668435
In October 2004, a case of caregiver-fabricated illness in a child was identified in a children's hospital in the Midwest. This case report begins with a discussion and explanation of the various nomenclatures that have been used by the healthcare community such as Munchausen syndrome by proxy, factitious disorder by proxy, medical child abuse, and caregiver-fabricated illness in a child. A discussion of case facts is then presented, which includes key concepts that nurses should know regarding a diagnosis of caregiver-fabricated illness in a child and the interventions that should be taken. PMID:25900681
Bejjani, Carla; Snow, A Lynn; Judge, Katherine S; Bass, David M; Morgan, Robert O; Wilson, Nancy; Walder, Annette; Looman, Wendy J; McCarthy, Catherine; Kunik, Mark E
This study examined the characteristics of caregivers and persons with dementia (PWD) to determine their association with caregiver depression. Participants included 508 PWD (veterans) and 486 caregivers from Boston, Houston, Providence, Beaumont (Texas), and Oklahoma City, identified from diagnoses from medical records and recruited from February 2007 to July 2009, for a larger study evaluating Partners in Dementia Care, a care-coordination intervention. Characteristics evaluated for PWD included activities of daily living, instrumental activities of daily living, cognitive impairment, and disruptive behavior. Caregiver characteristics evaluated included caregiver unmet needs, support-service use, and number of informal helpers. Caregiver depression was measured using the Iowa form 11-item Center for Epidemiologic Studies Depression Scale. Depressed caregivers reported significantly more unmet needs than the nondepressed caregivers. Depressed caregivers also reported a high frequency of disruptive behavior in their PWD. Caregiver perceptions of unmet needs may be an important target for intervention. PMID:23070578