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Sample records for alleviate caregiver burden

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

    PubMed

    Sorrell, Jeanne M

    2014-03-01

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

  2. [Caregivers of individuals with spinal cord injury: caregiver burden].

    PubMed

    Nogueira, Paula Cristina; Rabeh, Soraia Assad Nasbine; Caliri, Maria Helena Larcher; Haas, Vanderlei José

    2013-06-01

    A sectional study that had as its objectives to assess caregiver burden of for caregivers of individuals with Traumatic Spinal Cord Injury (TSCI) and its association with sociodemographic variables (age and sex), health status (self-reported illnesses) and caregiver characteristics (care time in years and daily hours of care). Data were collected by consultation of patient files and individual interviews at home using the instrument, Caregiver Burden Scale (CBScale). The results showed that most burden occurred in the domains: environment, disappointment and general strain. Presenting health problem (for all domains of the CBScale) and spending more hours per day in care (in the domain disappointment) represented the variables associated with burden. Studies of a more confirmatory nature than exploratory between the variables studied can be used to measure the burden obtained in this population of caregivers of individuals with TSCI.

  3. Caregiver Burden in Caregivers of Older Adults with Advanced Illness

    PubMed Central

    Garlo, Katherine; O’Leary, John R.; Van Ness, Peter H.; Fried, Terri R.

    2010-01-01

    OBJECTIVES To examine caregiver burden over time among caregivers of patients with advanced chronic disease. DESIGN Observational cohort with interviews over 12 months. PARTICIPANTS Caregivers of 179 community-living persons age ≥ 60 years with advanced cancer, heart failure (HF), or chronic obstructive pulmonary disease (COPD). MEASUREMENTS Caregiver burden assessed using a short-form of the Zarit Burden Inventory (ZBI) to measure psychosocial distress. RESULTS At baseline, the median caregiver burden was 5 (interquartile range [IQR 1,11]), which indicates that the caregiver endorsed having at least 2 of 10 distressing concerns at least some of the time. Only 10% reported no burden. Although scores increased modestly over time, the association between time and burden was not significant in longitudinal multivariable analysis. High burden was associated with caregivers’ need for more help with daily tasks (odds ratio [OR] = 23.13, 95% confidence interval [CI] = 5.94, 90.06) and desire for greater communication with the patient (OR = 2.53, 95% CI = 1.16, 5.53). The longitudinal multivariable analysis did not yield evidence of associations of burden with patient sociodemographic or health characteristics. CONCLUSION Caregiver burden was common among caregivers of patients with cancer, HF, and COPD. High burden was associated with the caregiver’s report of need for greater help with daily tasks but not with objective measures of the patient’s need for assistance, such as symptoms or functional status, suggesting that burden may be a measure of the caregiver’s ability to adapt to the caregiving role. PMID:21087225

  4. Caregiver Burden in Fragile X Families

    PubMed Central

    Iosif, Ana-Maria; Sciolla, Andres F.; Brahmbhatt, Khyati; Seritan, Andreea L.

    2013-01-01

    Complex caregiving issues occur in multigenerational families carrying the fragile X mutation and premutation. The same family members may care for children or siblings with fragile X syndrome (FXS) and for elderly parents with fragile X-associated tremor/ataxia syndrome (FXTAS). Family caregivers experience anxiety, depression, neglect of personal health care needs, employment difficulties, and loss of social support, leading to isolation and further psychiatric consequences. There is growing awareness of caregiver burden with regard to parents of children with FXS, but much less is known about the needs of informal caregivers of patients with FXTAS. In this paper, we review the available literature to date and provide suggestions for further exploration of caregivers' needs. Evidence-based strategies to address these needs are included. Many more research studies exploring caregiver burden in multigenerational fragile X families are needed, as well as studies aimed at investigating interventions and their impact on reduction. PMID:24348279

  5. Understanding social support burden among family caregivers.

    PubMed

    Wittenberg-Lyles, Elaine; Washington, Karla; Demiris, George; Oliver, Debra Parker; Shaunfield, Sara

    2014-01-01

    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.

  6. Awareness of Deficit in Alzheimer's Disease: Relation to Caregiver Burden.

    ERIC Educational Resources Information Center

    Seltzer, Benjamin; And Others

    1997-01-01

    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)

  7. Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka.

    PubMed

    Wijesinghe, Champa J; Cunningham, Natasha; Fonseka, Pushpa; Hewage, Chandanie G; Østbye, Truls

    2015-01-01

    A cross-sectional study was conducted among 375 caregivers of children with cerebral palsy attending a tertiary care setting in Sri Lanka, to identify factors associated with caregiver burden. Caregiver burden was defined as "caregiver's response to various stressors associated with caregiving" and was measured using Caregiver Difficulties Scale (CDS), developed specifically for this purpose. Multivariate linear regression was used to assess associations between sociodemographic, stressor, and coping factors and caregiver burden; and to examine whether coping reduces the effect of stressors on burden. Low income, rural residence, male sex, and number of functional deficits of the disabled child correlated significantly with higher caregiver burden, while spousal support correlated with lower burden. Seeking social support reduced the increased burden associated with greater functional impairments. Psychosocial interventions focused on evaluating and improving social support for caregivers may help families at high risk for caregiver distress, to minimize negative outcomes.

  8. Age, gender, kinship and caregiver burden in amyotrophic lateral sclerosis.

    PubMed

    Tramonti, Francesco; Bongioanni, Paolo; Leotta, Rebecca; Puppi, Irene; Rossi, Bruno

    2015-01-01

    Amyotrophic lateral sclerosis is a neurodegenerative disease that affects the motor neurons and causes progressive physical impairment. Also, other functions, such as breathing, swallowing and speech are compromised, and the loss of independence makes caregiver burden extremely high. The present study aimed at evaluating the differences in the caregiver burden due to age, gender and kinship. Women reported a higher physical and social burden than men, and partners scored higher in several dimensions of the caregiver burden when compared to sons and daughters. With respect to adult child caregivers, daughters reported higher levels of developmental burden than sons. Age has a significant impact on the caregiver burden, especially for the time dedicated to assistance and physical burden; disease severity is significantly related to the physical burden as well, and also with the developmental burden.

  9. The impact of education on caregiver burden on two inpatient oncology units.

    PubMed

    Creedle, Crista; Leak, Ashley; Deal, Allison M; Walton, Ann Marie; Talbert, Gayl; Riff, Barbara; Hornback, Ann

    2012-06-01

    Providing standardized education can alleviate the burden felt by the caregiver and improve health outcomes for both the patient and caregiver. Four disease groups were included in this study that represent a significantly longer hospital stay than other cancers: acute myelogenous leukemia, acute lymphoblastic leukemia, lymphoma, or those undergoing blood marrow transplant. The complexity of care is significantly higher, necessitating greater caregiver burden following hospitalization. Eligible patients and their caregivers received post-hospitalization care education through an Oncology CarePartner Program addressing the patient's physical and emotional needs. The impact of the CarePartners program on caregiver burden was evaluated by the Oberst Caregiving Burden Scale (OCBS) and Bakas Caregiving Outcomes Scale (BCOS) on two oncology units (medical/oncology (n = 17) and blood marrow transplant (n = 21)) at three times: within 5 days of admission (T1), patient discharge from the hospital (T2), and 30 days post-discharge (T3). There were significant increases seen from T1-T2 (median = 4, p = 0.0007) and T1-T3 (median = 5.5, p = 0.003) in the BCOS. No significant changes in OCBS (time or difficulty) were seen. Standardized patient education helped improve caregivers' overall well-being but lacked in impacting the time spent and difficulty with caregiving tasks. Educational changes to address these specific areas or evaluation by different scales are both worth further investigation.

  10. Caregiver burden and coping in early-stage Alzheimer disease.

    PubMed

    Zucchella, Chiara; Bartolo, Michelangelo; Pasotti, Chiara; Chiapella, Laura; Sinforiani, Elena

    2012-01-01

    This study was set out to describe caregiver-perceived burden and coping in early-stage Alzheimer disease (AD). A total of 163 consecutive pairs of patients with AD and their principal caregivers were initially recruited. The caregivers completed the Caregiver Burden Inventory (CBI) and the Coping Orientations to Problems Experienced scale, and also provided sociodemographic information; the patients with AD were assessed by means of the Mini Mental State Examination and the Neuropsychiatric Inventory. Data from 126 patient-caregiver pairs were analyzed. The caregivers (mean age 56.11±12.37 y) were mainly women (76%); 64% were the patient's offspring; 39% lived with the patient. From the CBI data, it emerged that caregivers perceived loss of personal time (objective burden, 33%) and the feeling of missing out on opportunities (developmental burden, 25%) as their main stressors. Total CBI score was negatively correlated with Mini Mental State Examination (P=0.005). As regards coping strategies, the caregivers predominantly used problem-oriented strategies associated with a positive attitude. The use of dysfunctional strategies was predictive of caregiver burden. It is important to be aware that avoidance and dysfunctional coping strategies predispose caregivers of patients with AD to higher level of distress, whereas successful caregiving seems to be based on the use of problem-oriented strategies early in the disease when solutions are still available.

  11. LEWY BODY DEMENTIA: CAREGIVER BURDEN AND UNMET NEEDS

    PubMed Central

    Galvin, James E.; Duda, John E.; Kaufer, Daniel I.; Lippa, Carol F.; Taylor, Angela; Zarit, Steven H.

    2010-01-01

    Lewy body dementia (LBD) is a common cause of dementia but to date, little is known about caregiver burden. The Lewy Body Dementia Association (www.LBDA.org) conducted a web-based survey of 962 caregivers (mean age 56y; 88% women). The most common initial symptoms were cognitive (48%), motor (39%), or both (13%). Caregivers expressed concerns about fear of future (77%), feeling stressed (54%), loss of social life (52%) and uncertainty about what to do next (50%). Caregivers reported moderate to severe burden; 80% felt the people around them did not understand their burden and 54% reported feelings of isolation with spousal caregivers reporting more burden than non-spousal caregivers. Only 29% hired in-home assistance while less than 40% used respite or adult day care, geriatric case managers or attended a support group meeting. Lack of service utilization occurred despite two-thirds of caregivers reporting medical crises requiring emergency services, psychiatric care or law enforcement. Caregivers reported preferences for web-based information, directories of LBD expert providers, information on LBD research and location of local support groups. These findings highlight significant unmet needs for LBD caregivers and provide targets for intervention to reduce caregiver burden. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers. PMID:20505434

  12. Caregiver Burden in Alzheimer’s Disease: Cross Sectional and Longitudinal Patient Correlates

    PubMed Central

    Mohamed, Somaia; Rosenheck, Robert; Lyketsos, Kostas; Schneider, Lon S.

    2014-01-01

    Objectives Alzheimer disease (AD) imposes a severe burden upon patients and their caregivers. Although there is substantial evidence of the adverse impact of burden, considerably less is known about its specific correlates and potential causes. Design We use data from the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE)-AD study to examine the relationship of burden and depression among AD caregivers to patient and caregiver sociodemographic characteristics, patients’ cognitive status, psychiatric and behavioral symptoms, functional abilities, quality of life, and intensity of care provided by caregivers. Setting CATIE-AD included outpatients in usual care settings, and assessed treatment outcomes over nine-months. Participants Data were examined from 421 ambulatory outpatients with a diagnosis of dementia of the Alzheimer's type or probable AD with agitation or psychosis. Measures The Burden Interview, the Beck Depression Inventory, and the Caregiver Distress Scale were used to evaluate caregiver burden. Results More severe psychiatric and behavioral problems and decreased patient quality of life, as well as lower functional capability were significantly associated with higher levels of burden and depression among caregivers at baseline. Six month changes showed that decreased symptoms and improved quality of life were associated with decreased burden and accounted for most of the explained variance in change in burden measures. Conclusion Severity of psychiatric symptoms, behavioral disturbances and patients’ quality of life are the main correlates of caregivers’ experience burden. Psychosocial and pharmacologic interventions targeting these two aspects of the disorder are likely to not only alleviate patient suffering but also promote caregiver well-being. PMID:20808108

  13. Burden on Caregivers of Patients with Schizophrenia and Related Factors

    PubMed Central

    YAZICI, Esra; KARABULUT, Ümit; YILDIZ, Mustafa; BASKAN TEKEŞ, Sinem; İNAN, Eda; ÇAKIR, Uğur; BOŞGELMEZ, Şükriye; TURGUT, Celaleddin

    2016-01-01

    Introduction Caregivers of patients with schizophrenia are under the burden of continuous and difficult processes. Determination of the factors related to caregiver burden in schizophrenia may help find strategies to decrease the burden. This study aimed at investigating the factors associated with caregiver burden among relatives of patients with schizophrenia. Methods Eighty-eight caregivers of patients under treatment for schizophrenia for at least 1 year were included in the study. The Zarit Caregiver Burden Interview was used for the assessment of caregiver burden. Sociodemographical data, the level of knowledge about schizophrenia, clinical impression scale, and global assessment of functioning were used to evaluate the related factors. Results Caregiver burden was negatively correlated with income level and functionality of the patient and was positively correlated with the age of the caregiver, the daily time spent with the patient, and the number of hospitalizations of the patient (p<0.05). There was no significant correlation between the caregivers’ knowledge about schizophrenia and caregiver burden (p<0.05). Living in the same house with the patient was a positive predictor, whereas functionality and income level of the patient and education level of the caregiver were negative predictors (p<0.05). Conclusion This study highlighted the importance of setting targets for improving the functionality of patients in the design and implementation of rehabilitation and support programs for patients with schizophrenia. Additionally, providing higher income for patients, creating conditions for an independent life, and increasing incentives for younger caregivers with a higher educational level may help decrease caregiver burden. PMID:28360779

  14. The Impact of Family Functioning on Caregiver Burden among Caregivers of Veterans with Congestive Heart Failure

    ERIC Educational Resources Information Center

    Moore, Crystal Dea

    2010-01-01

    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,…

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

    ERIC Educational Resources Information Center

    Cumming, John McClure

    2011-01-01

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

  16. “Sometimes It's Difficult to Have a Normal Life”: Results from a Qualitative Study Exploring Caregiver Burden in Schizophrenia

    PubMed Central

    Rofail, Diana; Abetz-Webb, Linda; Zarit, Steven H.; Berardo, Carmen Galani

    2014-01-01

    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

  17. Family Stigma and Caregiver Burden in Alzheimer's Disease

    ERIC Educational Resources Information Center

    Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia

    2012-01-01

    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…

  18. Perceived Stress: A Better Measure of Caregiver Burden.

    ERIC Educational Resources Information Center

    Chwalisz, Kathleen; Kisler, Valerie

    1995-01-01

    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…

  19. [The current perspectives regarding the burden on mental health caregivers].

    PubMed

    Cardoso, Lucilene; Vieira, Mariana Verderoce; Ricci, Maira Aparecida Malagutti; Mazza, Rafael Severio

    2012-04-01

    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.

  20. A Dimensional Analysis of Caregiver Burden among Spouses and Adult Children

    ERIC Educational Resources Information Center

    Savundranayagam, Marie Y.; Montgomery, Rhonda J. V.; Kosloski, Karl

    2011-01-01

    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…

  1. Effects of positive cognitions and resourcefulness on caregiver burden among caregivers of persons with dementia.

    PubMed

    Bekhet, Abir K

    2013-08-01

    Currently, 5.4 million persons in the USA are diagnosed with dementia, and this number is projected to rise to 7.7 million by the year 2030. Family caregivers provide up to 80% of the care needed by persons with dementia and published work suggests that caring for persons with dementia can be very costly to caregivers' health. This study examined the mediating and the moderating effects of positive cognitions on the relationship between caregiver burden and resourcefulness in 80 caregivers of persons with dementia. A descriptive, correlational, and cross-sectional design was used in this study. The researcher contacted the administrators at the Alzheimer's Association early stage programs in Southeastern Wisconsin and questionnaires were distributed to interested caregivers. Positive cognitions explained 31% of the variance in resourcefulness (F (1, 78) = 35.46, P < 0.001) and as positive cognitions increased, caregivers' resourcefulness increased. Positive cognitions were found to be a mediator as evidenced by a substantial drop in the beta weight of caregiver burden from B = -0.28 to B = -0.11 when positive cognitions were entered into the equation. Interventions to strengthen positive thinking among caregivers of persons with dementia are needed to help caregivers overcome their burden.

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

    PubMed

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

    2017-01-01

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

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

    PubMed Central

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

    2017-01-01

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

  4. Informal and Formal Social Support and Caregiver Burden: The AGES Caregiver Survey

    PubMed Central

    Shiba, Koichiro; Kondo, Naoki; Kondo, Katsunori

    2016-01-01

    Background We examined the associations of informal (eg, family members and friends) and formal (eg, physician and visiting nurses) social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results Multiple linear regression demonstrated that, after controlling for caregivers’ sociodemographic and other characteristics, informal social support was significantly associated with lower caregiver burden (β = −1.59, P < 0.0001), while formal support was not (β = −0.30, P = 0.39). Evaluating the associations by specific sources of social support, informal social supports from the caregiver’s family living together (β = −0.71, P < 0.0001) and from relatives (β = −0.61, P = 0.001) were associated with lower caregiver burden, whereas formal social support was associated with lower caregiver burden only if it was from family physicians (β = −0.56, P = 0.001). Compared to caregivers without informal support, those who had one support (β = −1.62, P < 0.0001) and two or more supports (β = −1.55, P < 0.0001) had significantly lower burden. This association was not observed for formal support. Conclusions Social support from intimate social relationships may positively affect caregivers’ psychological wellbeing independent of the receipt of formal social support, resulting in less burden. PMID:27180934

  5. Reciprocal Abuse: Elder Neglect and Abuse by Primary Caregivers and Caregiver Burden and Abuse in Turkey.

    PubMed

    Özcan, Neslihan Keser; Boyacıoğlu, Nur Elçin; Sertçelik, Elmas

    2017-04-01

    The aim of the study was to determine the relationship between the neglect and abuse that older people were exposed to by their primary caregivers and the experiences of caregivers' burden and abuse by their charges. This descriptive, cross-sectional and correlational study was conducted with 186 individuals over the age of 65 and 136 caregivers. The data were collected using questionnaires to determine neglect and abuse experienced by both older people and caregivers, and the Zarit Burden Scale. Abuse rate of the older people and their caregivers is both high and similar. This study is to make psychiatric nursing professionals aware of the problem of elder abuse and neglect. For researchers, educators, practitioners, and policymakers in the fields of aging, health, and mental health this study provides important data about elder abuse and neglect.

  6. The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease.

    PubMed

    Mioshi, Eneida; Foxe, David; Leslie, Felicity; Savage, Sharon; Hsieh, Sharpley; Miller, Laurie; Hodges, John R; Piguet, Olivier

    2013-01-01

    Caregiver burden is greater in frontotemporal dementia (FTD) than in Alzheimer disease (AD). However, little is known of the impact of the 3 main clinical variants of FTD- behavioral-variant frontotemporal dementia (bvFTD), semantic dementia (SemDem), and progressive nonfluent aphasia (PNFA)-or the role of disease severity in caregiver burden. The Zarit Burden Inventory was used to measure caregiver burden of bvFTD (n=17), SemDem (n=20), PNFA (n=20), and AD (n=19) patients. Symptom duration, caregiver age, and relationship type were matched across groups. Moreover, a number of caregiver (mood, social network) and patient variables (functional disability, behavioral changes, relationship with caregiver, and dementia stage) were addressed to investigate their impact on caregiver burden. Caregivers of bvFTD patients reported the highest burden, whereas SemDem and PNFA caregivers reported burden similar to AD. A regression analysis revealed that caregiver burden in FTD, regardless of subtype, was explained by a model combining disease staging, relationship changes, and caregiver depression. Burden increased with disease severity in FTD. This study is the first to show that caregivers of SemDem, PNFA, and AD patients show similar burden, while confirming that bvFTD caregivers show higher burden than AD caregivers. More importantly, this study demonstrates that burden worsens with disease progression in FTD.

  7. Caregiver burden among Iranian heart failure family caregivers: A descriptive, exploratory, qualitative study

    PubMed Central

    Bahrami, Masoud; Etemadifar, Shahram; Shahriari, Mohsen; Farsani, Alireza Khosravi

    2014-01-01

    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

  8. Caregiver Stigma and Burden in Memory Disorders: An Evaluation of the Effects of Caregiver Type and Gender

    PubMed Central

    Kahn, Phoebe V.; Wishart, Heather A.; Randolph, Jennifer S.; Santulli, Robert B.

    2016-01-01

    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

  9. Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada.

    PubMed

    Guerriere, Denise; Husain, Amna; Zagorski, Brandon; Marshall, Denise; Seow, Hsien; Brazil, Kevin; Kennedy, Julia; Burns, Sheri; Brooks, Heather; Coyte, Peter C

    2016-07-01

    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

  10. Primary caregivers of schizophrenia outpatients: burden and predictor variables.

    PubMed

    Grandón, Pamela; Jenaro, Cristina; Lemos, Serafín

    2008-04-15

    This article explores family burden in relation to relatives' coping strategies and social networks, as well as in relation to the patients' severity of positive and negative symptoms. Data on the severity of symptoms (Positive and Negative Syndrome Scale for Schizophrenia [PANSS]), social functioning (Social Functioning Scale [SFS]), caregivers burden (Interview on Objective and Subjective Family Burden or Entrevista de Carga Familiar Objetiva y Subjetiva [ECFOS]), coping skills (Family Coping Questionnaire [FCQ]), and social support (Social Network Questionnaire [SNQ]) were gathered from a randomized sample of 101 Chilean outpatients and their primary caregivers, mostly mothers. Low levels of burden were typically found, with the exception of moderate levels on general concerns for the ill relative. A hierarchical regression analysis with four blocks showed that clinical characteristics, such as higher frequency of relapses, more positive symptoms and lower independence-performance, together with lower self-control attributed to the patient, decrease in social interests, and less affective support, predict burden. The results support the relevance of psychoeducational interventions where families' needs are addressed.

  11. Association between traumatic brain injury-related brain lesions and long-term caregiver burden

    PubMed Central

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

    2015-01-01

    Objective To investigate the association between traumatic brain injury (TBI) related brain lesions and long-term caregiver burden in relation to dysexecutive syndrome. Setting National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland. Participants A total of 256 participants: 105 combat veterans with TBI, 23 healthy control combat veterans (HCv), and 128 caregivers. Outcome Measure Caregiver burden assessed by the Zarit Burden Interview (ZBI) at 40 years post-injury. Design Participants with penetrating TBI were compared with HCv on perceived caregiver burden and neuropsychological assessment measures. Data of Computed Tomography scans (overlay lesion maps of participants with a penetrating TBI whose caregivers have a significantly high burden) and behavioral statistical analyses were combined to identify brain lesions associated with caregiver burden. Results Burden was greater in caregivers of veterans with TBI than caregivers of HCv. Caregivers of participants with lesions affecting cognitive and behavioral indicators of dysexecutive syndrome (i.e., left dorsolateral prefrontal cortex and dorsal anterior cingulate cortex) showed greater long-term burden than caregivers of participants with lesions elsewhere in the brain. Conclusion and Implication TBI-related brain lesions have a lasting effect on long-term caregiver burden due to cognitive and behavioral factors associated with dysexecutive syndrome. PMID:26098258

  12. Assessment, measures and approaches to easing caregiver burden in Alzheimer's disease.

    PubMed

    Farcnik, Karl; Persyko, Michelle S

    2002-01-01

    The reduction of caregiver burden for those caring for patients with Alzheimer's disease (AD) is especially important given the prevalence of AD as populations age. This paper reviews the complex nature of caregiver burden, how it is measured, and possible interventions that may affect caregiver burden. Caregiver characteristics as well as symptoms exhibited by patients contribute to burden. A number of specific quantitative measures which have been developed to better evaluate caregiver burden are discussed. Such measures are also useful in measuring the impact of interventions on caregiver burden. Pharmacological treatment of patients with AD through the use of acetylcholinesterase inhibitors has positively affected cognition, activities of daily living, and behavioural problems. These benefits significantly reduce caregiver burden. The same is true for psychosocial interventions for the caregiver. It has been suggested that combining both approaches should be utilised for optimal management. Our knowledge of caregiver burden has greatly increased over the past two decades with clear benefits for both patients and caregivers. However, many aspects still clearly require further research. Given the significance of caregiver burden, various aspects have been extensively studied including contributing and protective factors, quantitative assessment, and pharmacological and psychosocial intervention. It is important for clinicians to be aware of this knowledge so that they can effectively incorporate it into their treatment plans for those affected by AD.

  13. Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden.

    PubMed

    Corvin, Jaime; Chan, Isabella; Tezak, Ann; Carpenter, Kelly; Aguado Loi, Claudia; Gonzales, Junius; Hoare, Ismael

    2017-01-01

    Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.

  14. Caregiver Burden in Patients Receiving Ranibizumab Therapy for Neovascular Age Related Macular Degeneration

    PubMed Central

    Forbes, Angus; Burton, Ben; Hykin, Phil; Sivaprasad, Sobha

    2015-01-01

    Purpose To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD). Methods This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA). Objective caregiver burden was determined by the caregiver tasks and level of care provided. The factors that may predict the caregiver burden such as the patient’s visual acuity of the better eye and vision related quality of life, demographics, satisfaction and support provided by the healthcare and the health status of the dyads were also collected and assessed in a hierarchical regression model. Results The mean CRA score was 3.2±0.5, similar to the score reported by caregivers for atrial fibrillation who require regular hospital appointments for monitoring their thromboprophylaxis. Caregiver tasks including accompanying for hospital appointments for eye treatment and patient’s visual acuity in the better eye were the biggest contributors to the caregiver burden hierarchical model explaining 18% and 11% of the variance respectively. Conclusion Ranibizumab therapy for nAMD is associated with significant caregiver burden. Both disease impact and treatment frequency contributed to the overall burden. PMID:26056840

  15. Dependency aspect of caregiver burden is uniquely related to cognitive impairment in Veterans.

    PubMed

    Stinson, Jennifer M; Collins, Robert L; Maestas, Kacey Little; Pacheco, Vitor; LeMaire, Ashley; Benge, Jared

    2014-01-01

    The psychosocial toll of caring for an individual with dementia is an important, if understudied, concept. For practitioners and researchers alike, understanding the relation between patient characteristics and different facets of caregiver burden is important for guiding treatment and prevention efforts. The current study analyzed the dimensions of caregiver burden and the relation between caregiver burden and results of neuropsychological testing. Participants included 243 dyads of caregivers and Veterans referred for neuropsychological evaluation. Caregivers completed the Zarit Burden Interview (ZBI) to assess caregiver burden. Patients completed a battery of neuropsychological tests measuring the domains of attention/processing speed, memory, language, and executive functioning. A principal components analysis of the ZBI revealed a three-factor structure: psychosocial burden, dependency burden, and guilt. Correlations with neuropsychological test performance by Veteran patients suggested that test performance in the memory, attention, processing speed, executive functioning, and emotional functioning domains were solely related to the caregiver dependency burden factor of the ZBI. Additional analyses suggested severity of dementia and number of tests in the impaired range further influenced reported caregiver burden. The current study is one of the few studies examining caregiver burden in relation to neuropsychological functioning in a mixed clinical sample and has important implications for clinical practice.

  16. Burden and coping strategies among Jordanian caregivers of patients undergoing hemodialysis.

    PubMed

    Alnazly, Eman Khamis

    2016-01-01

    Recent studies reported hemodialysis patients' sufferings from physical and psychosocial issues, but few studies reported family-caregiver burdens. This study aims to explore the burdens and coping strategies of caregivers of patients receiving hemodialysis. Caregivers of patients undergoing hemodialysis (n = 139) at 3 dialysis units were given 3 forms: Caregiver and Patient Characteristics, Oberst Caregiving Burden Scale Difficulty Subscale, and Ways of Coping Questionnaire. Descriptive statistics, correlational analysis, and multiple regression analysis were performed. The Oberst Caregiving Burden Scale was significantly related to self-controlling (r = 0.20) and seeking social support (r = 0.17). Caregiver burden was positively and significantly correlated with self-controlling coping subscale, with t = 1.10, P = 0.05, and β = 0.25. Living with the patient was the only variable that was a significant predictor of burden, with t = 2.96, P = 0.00, and β = 0.331. Living with patients predicted caregiver burden, and the burden scale correlated with self-controlling. The findings contribute to the evidence on the adverse health effects of caregivers of patients receiving hemodialysis. This study suggests that nursing interventions should target caregiver knowledge for better coping.

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

    PubMed Central

    2012-01-01

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

  18. Predictors of quality of life and caregiver burden among maternal and paternal caregivers of patients with eating disorders.

    PubMed

    Martín, Josune; Padierna, Angel; Aguirre, Urko; González, Nerea; Muñoz, Pedro; Quintana, José M

    2013-12-30

    This prospective study investigated quality of life and caregiver burden of 244 parent caregivers of 113 Spanish patients with Eating Disorders (ED). One hundred eleven mothers and 70 fathers fulfilled the inclusion criteria. ED patients completed the Hospital Anxiety and Depression Scale (HADS) and the Eating Attitudes Test-26. Caregivers completed the HADS, the Short Form-12 (SF-12), the Involvement Evaluation Questionnaire-EU version, and the Anorectic Behaviour Observation Scale. Descriptive statistics, ANOVA, Chi-square and Fisher's exact test were applied. Among mothers, anxiety and depression and patient age contributed to poorer quality of life. Caregiver variables that affected the burden for mothers were marital status, the mental subscale of the SF-12, and the mother's perception of the severity of her child's illness. Caregiver variables that affected the burden for fathers were the caregiver's anxiety and the physical domain of the SF-12. Among mothers but not fathers, being married was a protective factor of caregiver burden. Our findings suggest that mothers and fathers have different perceptions of their quality of life and caregiver burden, and that mothers of patients with ED may be in considerable need for extra psychosocial support.

  19. Care Burden and Self-Efficacy Levels of Family Caregivers of Elderly People in Turkey.

    PubMed

    Unver, Vesile; Basak, Tulay; Tosun, Nuran; Aslan, Ozlem; Akbayrak, Nalan

    2016-01-01

    The aim of this research was to determine the level of burden and self-efficacy among family caregivers of elderly people in Turkey. This study is descriptive and cross-sectional. A total of 658 family caregivers of elderly people were included in the study. The data were collected with a caregiver's characteristics form, elderly people's characteristics form, the Zarit Burden Interview, the self-efficacy scale, and the Barthell Index. Data were analyzed using SPSS 16.0 program. What are care burden and self-efficacy levels of the caregivers? Is there a relationship between care burden and self-efficacy levels of the caregivers with variables such as age, duration of care, sex, status of education, type of relationship, and status of employment that belong to the caregiver? Is there a relationship between care burden and self-efficacy levels of the caregivers with variables such as age and Bartell Index that belong to the elderly? The caregiver burden score was 38.65 ± 13.73, which indicates a moderate level of burden. The self-efficacy score was 29.31 ± 6.09, which is in the low range of self-efficacy. There were statistically significant differences between the caregiver burden score and the sex of caregivers, status of education, type of relationship, and the elderly person's score on the Bartell Index (P < .05). The relationship between the employment status of caregivers (P = .01), the age of the elderly (P = .01), and the caregivers' score on the self-efficacy scale (P < .05) was found to be statistically significant. Study revealed that the majority of the caregivers experienced moderate levels of care burden and low levels of self-efficacy. These results will provide beneficial information for nurses to provide the holistic nursing care.

  20. Family Caregiver Uplift and Burden: Associations with Aggressive Behavior in Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    Unwin, Gemma; Deb, Shoumitro

    2011-01-01

    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…

  1. Neuropsychiatric Symptoms in Parkinson’s Disease Dementia Are Associated with Increased Caregiver Burden

    PubMed Central

    Oh, Yoon-Sang; Lee, Ji E.; Lee, Phil Hyu; Kim, Joong-Seok

    2015-01-01

    Objective Neuropsychiatric symptoms are common in Parkinson’s disease dementia (PDD). Frequent and severe neuropsychiatric symptoms create high levels of distress for patients and caregivers, decreasing their quality of life. The aim of this study was to investigate neuropsychiatric symptoms that may contribute to increased caregiver burden in PDD patients. Methods Forty-eight PDD patients were assessed using the 12-item Neuropsychiatric Inventory (NPI) to determine the frequency and severity of mental and behavioral problems. The Burden Interview and Caregiver Burden Inventory were used to evaluate caregiver burden. Results All but one patient showed one or more neuropsychiatric symptoms. The three most frequent neuropsychiatric symptoms were apathy (70.8%) and anxiety (70.8%), followed by depression (68.7%). More severe neuropsychiatric symptoms were significantly correlated with increased caregiver burden. The domains of delusion, hallucination, agitation and aggression, anxiety, irritability and lability, and aberrant motor behavior were associated with caregiver stress. After controlling for age and other potential confounding variables, total NPI score was significantly associated with caregiver burden. Conclusions The results of this study confirm that neuropsychiatric symptoms are frequent and severe in patients with PDD and are associated with increased caregiver distress. A detailed evaluation and management of neuropsychiatric symptoms in PDD patients appears necessary to improve patient quality of life and reduce caregiver burden. PMID:25614783

  2. Caregiver burden and distress following the patient's discharge from psychiatric hospital

    PubMed Central

    Ranieri, Veronica; Madigan, Kevin; Roche, Eric; McGuinness, David; Bainbridge, Emma; Feeney, Larkin; Hallahan, Brian; McDonald, Colm; O'Donoghue, Brian

    2017-01-01

    Aims and method Caring for someone with a mental illness is increasingly occurring within the community. As a result, family members who fulfil a caregiving role may experience substantial levels of burden and psychological distress. This study investigates the level of burden and psychological distress reported by caregivers after the patient's admission. Results This study found that the overall level of burden and psychological distress experienced by caregivers did not differ according to the patient's legal status. However, the caregivers of those who were voluntarily admitted supervised the person to a significantly greater extent than the caregivers of those who were involuntarily admitted. Approximately 15% of caregivers revealed high levels of psychological distress. Clinical implications This study may emphasise a need for mental health professionals to examine the circumstances of caregivers, particularly of those caring for patients who are voluntarily admitted, a year after the patient's admission.

  3. A Measure of Subjective Burden for Dementia Care: The Caregiving Difficulty Scale Intellectual Disability

    ERIC Educational Resources Information Center

    McCallion, P.; McCarron, M.; Force, L. T.

    2005-01-01

    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…

  4. Determinants of subjective and objective burden of informal caregiving of patients with psychotic disorders

    PubMed Central

    Flyckt, Lena; Fatouros-Bergman, Helena; Koernig, Thomas

    2015-01-01

    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

  5. The influence of neuroticism and extraversion on the perceived burden of dementia caregivers: an exploratory study.

    PubMed

    González-Abraldes, Isabel; Millán-Calenti, José Carlos; Lorenzo-López, Laura; Maseda, Ana

    2013-01-01

    Most studies reflect dementia caregivers usually sustain higher levels of burden compared to other caregivers. However, they do not consider variability within the caregiver, such as personality traits. The purpose of this study was to examine the influence of extraversion and neuroticism on dementia caregiver burden. A cross-sectional descriptive study was conducted with 33 caregivers looking after demented-patients. All caregivers had intense burden levels, and their personality, depression, anxiety and self-rated health were evaluated. Personality variables had important effects on the caregiver burden and consequences on their mental health. Neuroticism was significantly correlated with burden (r=0.6, p<0.01), depression (r=0.68, p<0.01) and both anxiety measures, state (r=0.46, p<0.01) and trait (r=0.67, p<0.01). Extraversion was significantly correlated with neuroticism (r=-0.42, p<0.01) and burden (r=-0.46, p<0.01). Finally, depression was significantly correlated with state (r=0.63, p<0.01) and trait anxiety (r=0.66, p<0.01). These results indicate the importance of considering the caregiver personality in the theoretical and empirical models of the caring process. It is necessary to adequately assess the caregiver personality, as those presenting high levels of neuroticism and low levels of extraversion are more vulnerable to experience negative caring effects.

  6. Wives, Husbands, and Daughters Caring for Institutionalized and Noninstitutionalized Dementia Patients: Toward a Model of Caregiver Burden.

    ERIC Educational Resources Information Center

    Harper, Sarah; Lund, Dale A.

    1990-01-01

    Surveyed 409 caregivers. Found primary correlates of caregiver burden related to levels and types of impairment in patient functioning, caregiver life satisfaction, social support. Each category of caregiver circumstances had unique set of correlates with total amount of variance explained in burden ranging from 25 percent (husbands living with…

  7. Burden and associated pathologies in family caregivers of Alzheimer’s disease patients in Spain

    PubMed Central

    Cotelo, Natalia Vérez; Rodríguez, N. Floro Andrés; PÉREZ, José A. Fornos; Iglesias, J. Carlos Andrés; Lago, Marcos Ríos

    2014-01-01

    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

  8. Burden and mental health among caregivers of veterans with traumatic brain injury/polytrauma.

    PubMed

    Griffin, Joan M; Lee, Minji K; Bangerter, Lauren R; Van Houtven, Courtney Harold; Friedemann-Sánchez, Greta; Phelan, Sean M; Carlson, Kathleen F; Meis, Laura A

    2017-01-01

    Veterans who survive multiple traumatic injuries, including traumatic brain injuries (TBI), must often rely on family caregivers for ongoing care and support with reintegration. Understanding factors associated with caregiving that help or harm caregivers' health is critical for identifying appropriate and effective interventions that support caregiver health and promote the provision of quality care to veterans. This study utilized cross-sectional data from the Family and Caregiver Experiences Study, a survey of 564 caregivers caring for veterans who served after September 11, 2001, survived TBI/polytrauma during service, and received inpatient rehabilitation care in a Veterans Affairs Polytrauma Rehabilitation Center. Structural equation modeling was used to examine the relationship between caregiver stress (i.e., veterans' neurobehavioral problems and intensity of care required), and caregiver well-being (i.e., caregiver burden and mental health). Analyses also examined how intrapersonal, family or social, and financial resources mediate and moderate the relationship between caregiver stress and well-being. Results indicate that veterans' neurobehavioral problems and intensity of required care were associated with more caregiver burden, and more burden was associated with poor mental health. Intrapersonal and family or social resources mediated the relationship between veteran functioning and mental health. Family or social resources also moderated the relationship between care intensity and burden. The model explained a moderate amount of variability in burden (59%) and a substantial amount in mental health (75%). We conclude that caregivers of veterans with neurobehavioral problems who require intense care are at risk for burden and poor mental health. Increasing resources to bolster family or social resources may reduce risks. (PsycINFO Database Record

  9. Spousal role and caregiver burden in HIV affected families in Anhui Province, China.

    PubMed

    Hsieh, Julie; Li, Li; Lin, Chunqing; Luo, Sitong; Ji, Guoping

    2017-03-09

    This study examined the burden experienced by various roles of family caregivers of people living with HIV (PLH), in particular spouses vs. non-spouses. A total of 475 family members of PLH were recruited from Anhui Province, China. Participants responded to a survey using the Computer Assisted Personal Interview method. The assessment collected data on demographic characteristics and their perceived caregiver burden, which was compared between spouses and non-spouses. Multiple regression models were built to identify factors associated with caregiver burden. About 64.4% of our study participants were female and the mean age was 42.1 years. Among various relationships to PLH, almost half reported being a spouse. Spouses reported significantly higher caregiver burden than non-spouses. In addition, older age and lower family income were significantly associated with higher level of caregiver burden. Among the subsample of spouses, significantly higher level of caregiver burden was identified among wives. Future studies should give special consideration to address the needs of female spouses in order to reduce their caregiver burden.

  10. Parental caregiving of children with cancer and family impact, economic burden: nursing perspectives.

    PubMed

    Williams, Phoebe D; Williams, Kirstin A; Williams, Arthur R

    2014-03-01

    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.

  11. Burden, perceived health status, and mood among caregivers of Parkinson's disease patients.

    PubMed

    Martinez-Martin, Pablo; Arroyo, Susana; Rojo-Abuin, Jose Manuel; Rodriguez-Blazquez, Carmen; Frades, Belen; de Pedro Cuesta, Jesus

    2008-09-15

    The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross-sectional study that included 289 patient-caregiver pairs was conducted. Caregiver self-assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 +/- 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health-related quality of life (HRQol; EQ-Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r(S) = 0.01-0.28) with patient-related variables (disease duration, HY, SCOPA-Motor, SCOPA-AUT, HADS, PPRS, and CISI-PD) whereas the ZCBI correlated moderately (r(S) = 0.27-0.47). Among caregivers, the EQ-Tariff was significantly lower and the HADS-Anxiety scores significantly higher for women. ZCBI and HADS-depression, though not EuroQol and HADS-anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient-related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL.

  12. [Assessment of the burden of adult wheelchair-bound patients with neurological disabilities on the caregiver].

    PubMed

    Boaventura, Luiz Carlos; Borges, Heloise Cazangi; Ozaki, Armando Hitoshi

    2016-10-01

    The scope of this study was to evaluate factors that influence the burden of adult wheelchair-bound patients with neurological alterations on informal caregivers. Sixteen informal caregivers of adult wheelchair-bound patients with neurological alterations were evaluated, using the Zarit Burden Interview (ZBI) scale to evaluate the burden on caregivers, as well as gather data on the care and socio-demographic profile of the caregivers, on the socio-economic data and the degree of functional independence of adult wheelchair-bound patients with neurological alterations. Student's t-test, the one-way ANOVA with Tukey method and Pearson's product moment correlation coefficient were used for data analysis. The results associated lower education level of the caregiver (p = 0.01) and lower level of information of the affected pathology (p-value = 0.01) to a heavier burden on the caregiver. The therapeutic and social support provided by the support institutions, such as the Physiotherapy Clinic/School of CEUNSP, was revealed as being important to help caregivers to handle situations in an easier manner. Understanding the factors that influence the burden on the caregiver is important for planning and intervention for this specific population group.

  13. Effect of Second Generation Antipsychotics on Caregiver Burden in Alzheimer Disease

    PubMed Central

    Mohamed, Somaia; Rosenheck, Robert; Lyketsos, Constantine G.; Kaczyinski, Richard; Sultzer, David; Schneider, Lon S.

    2014-01-01

    Context Alzheimer disease (AD) imposes a severe burden upon patients and their caregivers. Severity of psychiatric symptoms and behavioral disturbances are important determinants of caregivers’ experience of burden. These symptoms may be improved with atypical antipsychotic treatment. Objective In this study we use data from the CATIE-AD trial to evaluate the effect of atypical antipsychotics as compared to placebo on the experiences of caregivers of outpatients with Alzheimer disease. Design We compared the effect of atypical antipsychotic drugs (olanzapine, risperidone or quetiapine) considered together as a group, to placebo, on experiences of caregivers of AD outpatients. We also evaluated whether improvement in patients’ psychiatric and behavioral symptoms mediated the relationship between drug treatment and caregiver burden. Setting CATIE-AD included outpatients in usual care settings, and assessed treatment effectiveness over a nine-month period. Participants Data from CATIE-AD participants who had at least one post-baseline outcome assessment, and from their caregivers, were examined in an intention-to-treat analysis (ITT) (N=361), and then in a phase 1 only analysis including only observations while on the initially randomized drug (N=153). Measures The Burden Interview, Beck Depression Inventory, and the NPI Caregiver Distress Scale were used to evaluate caregiver burden. Results In both ITT and phase 1-only analyses, caregivers of patients treated with second generation antipsychotics (SGAs) scored significantly lower than those on placebo on both the Burden Interview (p = 0.009) and the NPI Caregiver Distress Scale’s scores (p = 0.0209). These differences appeared to have been mediated by lower levels of agitation, hostility, and psychotic distortions. Conclusion In AD patients with symptoms of psychosis, agitation or aggressive behavior, medications can have a small but significant impact on caregiver burden. PMID:21939611

  14. Burden Among Caregivers of Children Living with Human Immunodeficiency Virus in North India

    PubMed Central

    Chauhan, Ramesh Chand; Rai, Sanjay Kumar; Kant, Shashi; Lodha, Rakesh; Kumar, Nand; Singh, Neelima

    2016-01-01

    Background: Due to wider access to and free antiretroviral therapy (ART) program, the number of children dying due to acquired immune deficiency syndrome (AIDS)-related causes has declined and the nature and duration of human immunodeficiency virus (HIV)/AIDS caregiving has also dramatically altered. The care of children living with HIV/AIDS (CLHA) places a significant additional burden on the caregivers. Aims: This study was conducted to assess the perceived burden among caregivers of children living with HIV in North India. Materials and Methods: A hospital-based cross-sectional study among 156 CLHA-caregiver dyads in North India was conducted from June 2010 to May 2011. Data were collected by using a pretested structured interview schedule. The caregiver burden was measured with a 36-item scale adapted from Burden Assessment Schedule of Schizophrenia Research Foundation (BASS). Child characteristics, caregiver characteristics, caregiving burden, the knowledge of caregivers, and issues related to health care, nutrition, education, and psychological aspects were studied. Results: Caregivers had a mean age of 35.9 ± 10.2 years. Women accounted for over three-fourth (76.9%) of the caregivers. Nearly two-third of them (65.4%) reported as living with HIV. The mean caregiver burden score was 68.7 ± 2.9. A majority of the caregivers reported either low or moderate burden. Standardized percentage score was high in the domains of physical and mental health, external support, patients’ behavior, and caregivers’ strategy and seemed to be comparatively less in the other domains such as support of the patient and taking responsibility. Conclusions: Caring of children is a universal practice but there is a need of special care for children living with HIV. The majority of caregivers who were usually the mothers perceived the burden and need to be assisted in caring for the child. Stigma and discrimination with HIV infection further increased the burden as caregivers did

  15. Caregiver burden in Parkinson disease with dementia compared to Alzheimer disease in Korea.

    PubMed

    Shin, Hyeeun; Youn, Jinyoung; Kim, Ji Sun; Lee, Jun-Young; Cho, Jin Whan

    2012-12-01

    We compared caregiver burden in Parkinson disease with dementia (PDD) to that in Alzheimer disease (AD) and examined the factors contributing to the burden in PDD. Totally, 42 patients with PDD and 109 patients with AD and their caregivers participated in this study. The caregiver burden was measured using the Burden Interview (BI). Scores of Barthel activities of daily living (BADLs), Mini-Mental State Examination, Clinical Dementia Rating of patients, and score of Center for Epidemiologic Studies Depression scale, and Euro-quality of life of the caregivers were examined. The Unified Parkinson's Disease Rating Scale (UPDRS) and Hoehn and Yahr stage of the patients were administered to assess burden relating to parkinsonism on PDD. We used multiple linear regression to assess the predictors. The BI of caregivers was higher in PDD (47.9, Standard deviation [SD]: 3.8) than in AD (36.3, SD:2.1). In the AD group, the BI was predicted by cognitive function ((β±SE: -0.8±0.4, P value=04) and basic ADL status of patients (β±SE: -1.3±0.1, P<.001), depressive symptoms (β±SE: 1.1±0.1, P<.001), and poor quality of life (β±SE: -0.2±0.1, P=.017) in caregivers. In PDD group, BI was predicted only by scores of Part 1 on the UPDRS (β±SE: 2.9±1.3, P=.03) of patients and depressive symptoms (β±SE: 1.1±0.2, P<.001) of the caregivers. We concluded the caregiver burden is higher in PDD than in AD and factors predicting burden are different in AD and PDD. In patients with PDD, the neuropsychiatric problems are the major contributor to caregiver burden.

  16. Caregiving responsibilities and burden among older people by HIV status and other determinants in Uganda.

    PubMed

    Mugisha, Joseph; Scholten, Francien; Owilla, Sebastian; Naidoo, Nirmala; Seeley, Janet; Chatterji, Somnath; Kowal, Paul; Boerma, Ties

    2013-01-01

    Older caregivers have major caregiving responsibilities in countries severely affected by the HIV epidemic, but little is known about their own health and well-being. We conducted this study to assess the association of caregiving responsibilities and self-perceived burden with caregivers' health, HIV status, background characteristics and care-receiving among older people in South Western Uganda. Men and women aged 50 years and older were recruited from existing cohort studies and clinic registers and interviewed at home. Health was measured through a composite score of health in eight domains, anthropometry and handgrip strength. Summary measures of caregiving responsibilities and self-reported burden were used to analyse the main associations. There were 510 participants, including 198 living with HIV. Four fifths of women and 66% of men were caregivers. Older respondents with no care responsibility had poorer scores on all health indicators (self-reported health score, body mass index and grip strength). Having a caregiving responsibility was not associated with poorer health status or quality of life. Notably, HIV-infected people, whether on antiretroviral treatment (ART) or not, had similar caregiving responsibilities and health status as others. The self-reported burden associated with caregiving was significantly associated with a poorer health score. One third of female caregivers were the single adult in the household with larger caregiving responsibilities. Many of these women are in the poorest wealth quartile of the households in the study and are therefore more likely to need assistance. Physical and financial supports were received by 70% and 63%, respectively. Those with larger caregiving responsibilities more frequently received support. Caregiving responsibilities were associated with better health status, greater satisfaction and quality of life. Older HIV-infected people, whether on ART or not, had similar caregiving responsibilities and self

  17. Video Game Addiction and Life Style Changes: Implications for Caregivers Burden.

    PubMed

    Sharma, Manoj Kumar

    2016-01-01

    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.

  18. Video Game Addiction and Life Style Changes: Implications for Caregivers Burden

    PubMed Central

    Sharma, Manoj Kumar

    2016-01-01

    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

  19. The heterogeneity in financial and time burden of caregiving to children with chronic conditions.

    PubMed

    Zan, Hua; Scharff, Robert L

    2015-03-01

    We examine the financial and time burdens associated with caring for children with chronic conditions, focusing on disparities across types of conditions. Using linked data from the 2003 to 2006 National Health Interview Survey and 2004-2008 Medical Expenditure Panel Survey, we created measures of financial burden (out-of-pocket healthcare costs, the ratio of out-of-pocket healthcare costs to family income, healthcare costs paid by insurance, and total healthcare costs) and time burden (missed school time due to illness or injury and the number of doctor visits) associated with 14 groups of children's chronic conditions. We used the two-part model to assess the effect of condition on financial burden and finite mixture/latent class model to analyze the time burden of caregiving. Controlling for the influences of other socio-demographic characteristics on caregiving burden, children with chronic conditions have higher financial and time burdens relative to caregiving burdens for healthy children. Levels of financial burden and burden sharing between families and insurance system also vary by type of condition. For example, children with pervasive developmental disorder or heart disease have a relatively low financial burden for families, while imposing a high cost on the insurance system. In contrast, vision difficulties are associated with a high financial burden for families relative to the costs borne by others. With respect to time burden, conditions such as cerebral palsy and heart disease impose a low time burden, while conditions such as pervasive developmental disorder are associated with a high time burden. This study demonstrates that differences exist in caregiving burden for children by type of chronic condition. Each condition has a unique profile of time and financial cost burden for families and the insurance system. These results have implications for policymakers and for families' savings and employment decisions.

  20. Caregiver burden, health utilities, and institutional service use in Alzheimer’s Disease

    PubMed Central

    Miller, Edward Alan; Rosenheck, Robert A.; Schneider, Lon S.

    2011-01-01

    Objective This study examined the moderating effect of caregiver burden on the relationship between the health status of Alzheimer’s disease (AD) patients and their use of institutional services (i.e., hospitalization, nursing home, and residential care). Methods Data were obtained at baseline and 3-, 6-, and 9-months following study entry on 421 community-dwelling patients with AD in the CATIE-AD trial. The outcome variable includes use of any institutional services. Logistic regression was employed to estimate the interaction of Health Utility Index (HUI)-III score (a general health status measure) at outcome and four concurrent caregiver burden measures. Marginal effects were calculated and plotted using random effects models for observations at multiple time points per individual. Average effects were calculated across all observations using models without random effects. Results Random effects results suggest that caregiver burden weakens the inverse relationship between health utilities and institutional service use, leading to greater likelihood of institutional use than would be expected at a given level of health. This is indicated by positive, significant signs on the HUI-III*caregiver burden interaction when burden is measured using the Caregiver Distress Scale, Beck Depression Inventory (BDI), and Caregiver Assessment Survey (all p<.05). It is reinforced by positive, significant average effects deriving from Caregiver Distress and BDI models without random effects (both p<.10). Results deriving from the Burden Interview Scale, though positive, were non-significant and weak by comparison. Conclusion Caregiver support interventions should be offered to individuals caring for less advanced AD patients. Otherwise healthy patients may be at increased risk for institutionalization when caregivers experience high levels of burden. PMID:21560160

  1. Burden of Care on Caregivers of Schizophrenia Patients: A Correlation to Personality and Coping

    PubMed Central

    Geriani, Disha; Savithry, Kochukarottil Satish Babu; Shivakumar, Seemanthini

    2015-01-01

    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

  2. Elevated burden for caregivers of children with persistent asthma and a developmental disability.

    PubMed

    Koehler, Alana D; Fagnano, Maria; Montes, Guillermo; Halterman, Jill S

    2014-11-01

    To evaluate how having a child with both persistent asthma and a developmental disability (DD) affects caregiver burden and quality of life (QOL). 3-10 year old children with persistent asthma in urban Rochester, NY. Cross-sectional baseline survey (2006-2009). Parent report of autism spectrum disorder or other behavioral disorder requiring medication. Caregiver burden and QOL as measured by scores on previously validated depression, parenting confidence, and asthma-related QOL scales as well as an assessment of competing demands on the caregiver. Bivariate and multivariate regression analyses controlling for caregiver age, education, marital status, race, ethnicity, and child asthma symptom severity. We enrolled 530 children as part of a larger study (response rate: 74; 63 % Black, 73 % Medicaid). Of this sample, 70 children (13 %) were defined as having a DD. There were no differences in asthma symptom severity between children with and without a DD diagnosis. However, even after adjusting for potential confounders, caregivers of children with a DD reported worse scores on the depression (p = .003), parenting confidence (p < .001), and competing demands (p = .013) scales and worse asthma-related QOL (p = .035) compared to caregivers of typically developing children with asthma. Despite having similar asthma symptom severity, caregivers of children with both persistent asthma and a DD diagnosis report more burden and lower QOL compared to that of caregivers of typically developing children and persistent asthma. Further attention to this subgroup is needed to promote optimal support for caregivers.

  3. Caregiver burden, health utilities and institutional service costs among community-dwelling paients with Alzheimer's disease

    PubMed Central

    Miller, Edward Alan; Rosenheck, Robert A.; Schneider, Lon S.

    2014-01-01

    This study examined the moderating effect of caregiver burden on the relationship between patients’ health status and institutional costs in Alzheimer's disease (AD). Data were obtained on whether 421 community-dwelling patients with AD in the CATIE-AD trial received institutional services in the month preceding baseline and at 3-, 6-, and 9-months follow-up. All participants had a caregiver who lived with or visited them regularly. Outcome variables include hospital, nursing home, residential, and combined institutional costs. Mixed models were employed to estimate the interaction of Health Utility Index (HUI)-III scores (a health status measure) and five measures of caregiver burden. Wherever significant, results indicate that greater caregiver burden weakens the inverse relationship between health utilities and institutional costs, leading to greater costs than would be expected at a given level of health. Altogether 45.0% of the models (9/20) showed this effect (positive coefficient on the burden-HUI interaction term). Interventions should be based on caregiver burden, regardless of care recipient health status, for even seemingly manageable patients may be at heightened risk for institutionalization if caregivers experience sufficiently high levels of burden. PMID:20625266

  4. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients’ behavioral changes than physical disability: a comparative study

    PubMed Central

    2012-01-01

    Background Behavioral changes in patients with amyotrophic lateral sclerosis (ALS) mirror those found in frontotemporal dementia (FTD). Considering the high rate of neuropsychiatric symptoms found in ALS patients, this paper examines whether caregiver burden is associated with behavioral changes over and above the physical disability of patients with ALS, and if the presence of caregivers’ depression, anxiety and stress also impacts on caregiver burden. Methods 140 caregivers of patients with ALS participated in a postal survey investigating patients’ neuropsychiatric symptoms (Cambridge Behaviour Inventory Revised CBI-R), motor function (Amyotrophic Lateral Sclerosis Functional Rating Scale Revised - ALSFRS-R), caregiver burden (Zarit Burden Interview), and caregiver mood (Depression, Anxiety and Stress Scale- DASS21). Seventy four percent of them were caregivers of patients with limb onset and 25.7% were caregivers of patients with bulbar onset. Results Moderate to severe behavioral changes were reported in 10-40% of patients with ALS. The levels of depression, anxiety and stress in the caregivers reached 20%. Burden was high in 48% of the caregivers. The strongest predictor of high caregiver burden was ALS patients’ abnormal behavior rather than physical disability, with an odds ratio of 1.4, followed by caregivers’ stress. Conclusions Our study has identified that behavioral changes (e.g. disinhibition, impulsivity) and caregiver stress have greater impact on caregiver burden than level and pattern of physical disability. PMID:23216745

  5. Patients on the waiting list for liver transplantation: caregiver burden and stress.

    PubMed

    Miyazaki, Eliane Tiemi; Dos Santos, Randolfo; Miyazaki, M Cristina; Domingos, Neide M; Felicio, Hellen C; Rocha, Marcia F; Arroyo, Paulo C; Duca, William J; Silva, Renato F; Silva, Rita C M A

    2010-10-01

    Over the last few decades, informal caregivers of patients with chronic diseases have received more attention, and there is a growing volume of studies demonstrating high rates of burden, stress, and mental disorders in this group of individuals. The objective of this study was to evaluate the burden, stress, and psychosocial characteristics of informal caregivers of liver transplantation candidates. Participants were assessed by individual evaluations with the following instruments: a semistructured interview, the Caregiver Burden Scale, the Inventário de Sintomas de Stress para Adultos de Lipp, and the Beck Depression Inventory. The Mann-Whitney test was used for statistical analysis with a significance level of 0.05. The characteristics of the study group (n = 61) were similar to those of groups in other studies with respect to gender (82% were women), kinship (64% were spouses), and age (the mean age was 47.6 years). The main stressors identified by the participants were as follows: doubts about ways to react in a crisis or in emergency situations (42.6%), mood swings of the patient (29.5%), and care involving food and medications (27.9%). Approximately 25% of the caregivers reported that they felt unprepared to adequately perform their roles. Data analysis indicated a greater burden overall on caregivers when the patient's Model for End-Stage Liver Disease score was greater than or equal to 15 points (P = 0.041). Furthermore, caregivers of patients with alcoholic liver disease showed higher depression (P = 0.034) and overall burden scores (P = 0.031) versus caregivers of patients with liver disease due to other etiologies. In conclusion, the participants showed significantly high levels of burden, stress, and depression. Support measures and caregiver preparation should be implemented by health care providers.

  6. [Home care of demented and non-demented patients. II: Health and burden of caregivers].

    PubMed

    Grässel, E

    1998-02-01

    1911 informal caregivers from the Federal Republic of Germany who care for someone with a chronic, non-congenital condition rendering them in need of physical "hands-on" nursing completed a standardized questionnaire on their situation as caregivers. The questionnaire was pertinent in particular to their own somatic symptoms (Giessen Symptom List, GSL) as well as their subjective burden (Burden Scale for Family Caregivers, BSFC). Eight out of ten caregivers in Germany are women. The home care of a dementia patient or of a distant or non-related person is taken on significantly more frequently by female caregivers. Somatic symptoms covering the spectrum of exhaustion, aching limbs, and heart and stomach complaints are in greater evidence amongst caregivers of dementia patients than amongst those caring for elderly people with relatively unimpaired cognitive performance. In all, the average extent of the somatic symptoms lies significantly above the age and gender specific value for the general population. The increased subjective burden of caregivers caring for a dementia patient expresses itself particularly in more interpersonal conflicts and clashes of interest between the care given and other areas of activity.

  7. Influence of family dynamics on burden among family caregivers in aging Japan

    PubMed Central

    Kusaba, Tesshu; Sato, Kotaro; Fukuma, Shingo; Yamada, Yukari; Matsui, Yoshinori; Matsuda, Satoshi; Ando, Takashi; Sakushima, Ken; Fukuhara, Shunichi

    2016-01-01

    Background. Long-term care for the elderly is largely shouldered by their family, representing a serious burden in a hyper-aging society. However, although family dynamics are known to play an important role in such care, the influence of caring for the elderly on burden among caregiving family members is poorly understood. Objective. To examine the influence of family dynamics on burden experienced by family caregivers. Methods. We conducted a cross-sectional study at six primary care clinics, involving 199 caregivers of adult care receivers who need long-term care. Participants were divided into three groups based on tertile of Index of Family Dynamics for Long-term Care (IF-Long score), where higher scores imply poorer relationships between care receivers and caregiving family: best, <2; intermediate, 2 to <5; worst, ≥5. The mean differences in burden index of caregivers (BIC-11) between the three groups were estimated by linear regression model with adjustment for care receiver’s activity of daily living and cognitive function. Results. Mean age of caregivers was 63.2 years (with 40.7% aged ≥ 65 years). BIC-11 scores were higher in the worst IF-Long group (adjusted mean difference: 4.4, 95% confidence interval: 1.2 to 7.5) than in the best IF-Long group. We also detected a positive trend between IF-Long score and BIC-11 score (P-value for trend <0.01). Conclusion. Our findings indicate that family dynamics strongly influences burden experienced by caregiving family members, regardless of the care receiver’s degree of cognitive impairment. These results underscore the importance of evaluating relationships between care receivers and their caregivers when discussing a care regimen for care receivers. PMID:27450988

  8. Effects of Caregiver Burden and Satisfaction on Affect of Older End Stage Renal Disease Patients and their Spouses

    PubMed Central

    Wilson-Genderson, Maureen; Pruchno, Rachel A.; Cartwright, Francine P.

    2009-01-01

    Analyses examine the extent to which a two-factor model of affect explains how the burdens and satisfactions experienced by caregivers influence their own well-being and that of the spouses for whom they provide care. Using data from 315 older patients with End Stage Renal Disease and their spouses, we extend tests of Lawton et al.'s (1991) two-factor model both longitudinally and dyadically. Multilevel modeling analyses partially support the two-factor model. Consistent with the model, mean caregiver burden has a stronger effect on both caregiver and patient negative affect than does mean caregiver satisfaction. Contrary to the model, mean caregiver satisfaction has an effect on caregiver positive affect that is similar to that of mean caregiver burden, and it has no effect on patient positive affect. Time-varying effects of caregiver burden are consistent with the two-factor model for caregiver but not patient negative affect. Time-varying effects of caregiver satisfaction are not consistent with the two-factor model for either patients or caregivers. Results highlight the powerful role of caregiver burden for both caregivers and patients and suggest important new directions for conducting health-related research with late-life marital dyads. PMID:20025409

  9. Concepts of burden in giving care to older relatives: a study of female caregivers in a Mexico City neighborhood.

    PubMed

    Mendez-Luck, Carolyn A; Kennedy, David P; Wallace, Steven P

    2008-09-01

    This study examined how women in a Mexico City suburb conceptualized the construct of burden within the context of giving care to older relatives. Data were collected on 41 women through semi-structured interviews regarding their caregiving experiences to elderly relatives. Phenomenological principles were used to analyze meanings and understandings of caregiving experiences. 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. 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.

  10. Burden and depression in primary caregivers of persons with visual impairment

    PubMed Central

    Khare, Shubhank; Rohatgi, Jolly; Bhatia, Manjeet Singh; Dhaliwal, Upreet

    2016-01-01

    Context: Caregivers who assist persons with visual impairment often neglect their needs, resulting in burden and depression. Rehabilitation efforts, directed to the disabled, seldom target the caregiver. Aim: To assess burden and depression in persons caring for blind individuals. Settings and Design: This was a cross-sectional study carried out in the outpatient department of a tertiary-level teaching hospital in New Delhi. Materials and Methods: Institutional Ethical Board approval was obtained and written informed consent too was obtained from the participants involved in this study. Persons with best-corrected vision <20/200 in the better eye, and their primary caregivers, were recruited. We recorded demography, other illness/disability, household income, relationship with disabled person, and caregiver burden (Caregiver Burden Scale) and depression (Centre for Epidemiologic Studies Depression Scale). Statistical Analysis: Statistical analysis was carried out using SPSS version 20 (Released 2011. Armonk, NY: IBM Corp.); range, average, and standard deviation were determined for age, burden, and depression. The association between burden and depression was determined using Pearson's correlation; the relationship between degree of disability and caregiver burden and depression was determined using unpaired t-test; using multiple linear regression, factors were found to be statistically significant; significance was taken at P < 0.05. Results: Twenty-seven (53.0%) men and 24 (47.0%) women had visual impairment. Most caregivers (n = 40; 81.6%) were first-degree relatives or a spouse; 32 (65%) had schooling <5 years; and 29 (59%) were unemployed. Depression ranged from 21 to 52 (average 43.2 ± 5.71); it correlated with degree of disability (P = 0.012), household income (r = −0.320; P = 0.025), and burden (r = 0.616; P < 0.001). Burden ranged from 30 to 73 (average 54.5 ± 6.73) and correlated with degree of disability (P = 0.006). On multiple linear regression

  11. Predictors of Alzheimer's Disease Caregiver Depression and Burden: What Noncaregiving Adults Can Learn from Active Caregivers

    ERIC Educational Resources Information Center

    Hayslip, Bert, Jr.; Han, GiBaeg; Anderson, Cristina L.

    2008-01-01

    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…

  12. Elevated Burden for Caregivers of Children with Persistent Asthma and a Developmental Disability

    PubMed Central

    Koehler, Alana D.; Fagnano, Maria; Montes, Guillermo; Halterman, Jill S.

    2014-01-01

    Objective To evaluate how having a child with both persistent asthma and a developmental disability (DD) affects caregiver burden and quality of life (QOL). Methods Subjects/Setting 3–10 yr old children with persistent asthma in urban Rochester, NY. Design Cross-sectional baseline survey (2006–2009). DD Definition Parent report of autism spectrum disorder or other behavioral disorder requiring medication. Primary Outcome Caregiver burden and QOL as measured by scores on previously validated depression, parenting confidence, and asthma-related quality of life scales as well as an assessment of competing demands on the caregiver. Analyses Bivariate and multivariate regression analyses controlling for caregiver age, education, marital status, race, ethnicity, and child asthma symptom severity. Results We enrolled 530 children as part of a larger study (response rate: 74%; 63% Black, 73% Medicaid). Of this sample, 70 children (13%) were defined as having a DD. There were no differences in asthma symptom severity between children with and without a DD diagnosis. However, even after adjusting for potential confounders, caregivers of children with a DD reported worse scores on the depression (p = .003), parenting confidence (p<.001), and competing demands (p = .013) scales and worse asthma-related quality of life (p = .035) compared to caregivers of typically developing children with asthma. Conclusions Despite having similar asthma symptom severity, caregivers of children with both persistent asthma and a DD diagnosis report more burden and lower QOL compared to that of caregivers of typically developing children and persistent asthma. Further attention to this subgroup is needed to promote optimal support for caregivers. PMID:24619226

  13. Factors Associated with Family Caregivers' Burden and Depression in Korea

    ERIC Educational Resources Information Center

    Yoon, Hyunsook

    2003-01-01

    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…

  14. Concepts of burden in giving care to older relatives: A study of female caregivers in a Mexico City neighborhood

    PubMed Central

    Mendez-Luck, Carolyn A.; Kennedy, David P.; Wallace, Steven P.

    2010-01-01

    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

  15. Burden and Depression among Caregivers of Visually Impaired Patients in a Canadian Population

    PubMed Central

    Khan, Zainab; Braich, Puneet S.; Rahim, Karim; Rayat, Jaspreet S.; Xing, Lin; Iqbal, Munir; Mohamed, Karim; Sharma, Sanjay; Almeida, David

    2016-01-01

    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

  16. Caregiver Burden, Spirituality, and Psychological Well-Being of Parents Having Children with Thalassemia.

    PubMed

    Anum, Jawaria; Dasti, Rabia

    2016-06-01

    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: 10.1037/0022-3514.57.6.1069 ) 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.

  17. The determinants of informal caregivers' burden in the care of frail older persons: a dynamic and role-related perspective.

    PubMed

    Mello, J de Almeida; Macq, J; Van Durme, T; Cès, S; Spruytte, N; Van Audenhove, C; Declercq, A

    2016-04-07

    Research into informal caregivers' burden does not distinguish between different stages of impairment. This study explored the determinants of burden from an in-depth perspective in order to identify which determinants apply to which phases of impairment.

  18. The Association of Satisfaction and Perceived Burden With Anxiety and Depression in Primary Caregivers of Dependent Elderly Relatives.

    PubMed

    del-Pino-Casado, Rafael; Palomino-Moral, Pedro A; Frías-Osuna, Antonio

    2015-10-01

    Some researchers have viewed caregiver burden and satisfaction as two ends of the same continuum rather than as independent aspects of the caregiving experience. We conducted a cross-sectional study of primary caregivers of dependent elderly relatives in Spain (N = 200; probabilistic sample), to determine whether satisfaction and perceived burden coexisted in caregivers, and whether these variables, considered separately and in combination, were associated with anxiety and depression, while controlling for objective aspects of care recipients' needs. Data on satisfaction with care, perceived burden, objective burden, anxiety, and depression were gathered in 2013 by interviews in caregivers' homes. Descriptive, bivariate, and multivariate analyses were performed. Of the 200 primary caregivers, 12.5% reported both high satisfaction with care and high perceived burden. Anxiety and depression levels were lower in caregivers with high satisfaction and low perceived burden than in those with low satisfaction and high burden or with high satisfaction and high burden. Our findings support the following conclusions: (1) Satisfaction may be experienced despite the presence of stressful factors; (2) the combination of high satisfaction and low burden might have protective effects on anxiety and depression in caregivers.

  19. INSTRUMENT TO ASSESS BURDEN ON CAREGIVERS OF CHRONIC MENTALLY ILL

    PubMed Central

    Thara, R.; Padmavati, R.; Kumar, Shuba; Srinivasan, Latha

    1998-01-01

    The family is a major source of support for the mentally ill in India. Although Indian families show tremendous resilience in caring for their ill relatives, they experience a lot of physical and emotional distress. The burden assessment schedule (BAS) aims to assess both objective and subjective burden experienced by the primary care givers of chronic mentally ill patients. Stepwise ethnographic exploration has been used in the development of this 40 item instrument. Reliability exercises have been carried out throughout the development of this schedule. Criterion validity has been established by comparing with another standardized instrument to assess burden, which has been developed in India. PMID:21494438

  20. Psychological Distress Among Latino Family Caregivers of Adults With Schizophrenia: The Roles of Burden and Stigma

    PubMed Central

    Magaña, Sandy M.; Ramírez García, Jorge I.; Hernández, María G.; Cortez, Raymond

    2008-01-01

    Objective Little research has focused on the mental health of Latino caregivers with a relative with schizophrenia, despite data showing that up to three-quarters of Latino persons with schizophrenia live with their families. This study examined the relation between caregivers’ mental health and perceived burden and stigma and characteristics of the patient and caregiver. Methods Interviews were conducted in the language of preference (Spanish or English) in Wisconsin, California, and Texas with 85 Latinos caring for an adult with schizophrenia. Measures included the Center for Epidemiologic Studies–Depression Scale, the Zarit Burden Scale, and the Greenley Stigma Scale. Results General population studies of Mexican Americans have found that between 12% and 18% meet the cutoff for being at risk of depression; however, 40% of the sample met this criterion. Younger caregiver age, lower levels of caregivers’ education, and higher levels of the patients’ mental illness symptoms were predictive of higher levels of caregivers’ depressive symptoms. Caregivers’ perceived burden mediated the relation between patients’ psychiatric symptoms and caregivers’ depression. Caregivers’ perceived stigma was significantly related to caregivers’ depressive symptoms, even when the analyses statistically adjusted for psychiatric symptoms and demographic variables. Conclusions The high rates of depressive symptoms among Latino families caring for a relative with schizophrenia suggest that interventions should include attention to the mental health and recovery of family caregivers in addition to the patient’s recovery. Younger Latino caregivers and those with lower levels of education are particularly at risk of depression. PMID:17325112

  1. Effectiveness of Problem-Focused Coping Strategies on the Burden on Caregivers of Hemodialysis Patients

    PubMed Central

    Ghane, Golnar; Ashghali Farahani, Mansoureh; Seyedfatemi, Naima; Haghani, Hamid

    2016-01-01

    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

  2. Modeling the Social Determinants of Caregiver Burden among Families of Children with Developmental Disabilities

    ERIC Educational Resources Information Center

    McManus, Beth M.; Carle, Adam; Acevedo-Garcia, Dolores; Ganz, Michael; Hauser-Cram, Penny; McCormick, Marie

    2011-01-01

    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…

  3. The Impact of Intellectual Disability, Caregiver Burden, Family Functioning, Marital Quality, and Sense of Coherence

    ERIC Educational Resources Information Center

    Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir

    2011-01-01

    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…

  4. Attenuation of neuropsychiatric symptoms and caregiver burden in Alzheimer's disease by motor intervention: a controlled trial

    PubMed Central

    Stella, Florindo; Canonici, Ana Paula; Gobbi, Sebastião; Santos-Galduroz, Ruth Ferreira; de Castilho Cação, João; Gobbi, Lílian Teresa Bucken

    2011-01-01

    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

  5. The Impact of Anticipatory Grief on Caregiver Burden in Dementia Caregivers

    ERIC Educational Resources Information Center

    Holley, Caitlin K.; Mast, Benjamin T.

    2009-01-01

    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…

  6. Self-characterizations of adult female informal caregivers: gender identity and the bearing of burden.

    PubMed

    Kramer, Maeona K

    2005-01-01

    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.

  7. Zarit Burden Interview Psychometric Indicators Applied in Older People Caregivers of Other Elderly 1

    PubMed Central

    Bianchi, Mariana; Flesch, Leticia Decimo; Alves, Erika Valeska da Costa; Batistoni, Samila Sathler Taveres; Neri, Anita Liberalesso

    2016-01-01

    ABSTRACT Objective: to derive psychometric indicators of construct validity and internal consistence of the Zarit Burden Interview scale for caregivers, describing associations of the scale with metrics related to care demands, coping strategies and depression in aged caregivers. Method: crosscutting descriptive and correlational study. The convenience sample was composed by a hundred and twenty one senior caregivers (Avg=70.5 ± 7.2 years, 73% women). They answered a questionnaire to check the physical and cognitive demands of care, the Zarit Burden Interview (ZBI), the California Inventory of Coping Strategies and the Geriatric Depression Scale (GDS-15). Results: ZBI showed good internal consistency and also for the three factors emerging from factor analysis, explaining 44% of variability. ZBI is positively related with objective care demands (p < 0.001), depression (p = 0.006) and use of dysfunctional coping strategies (p = 0.0007). Conclusion: ZBI is of interest to be applied to aged caregivers and the association of higher degrees of burden, dysfunctional coping and depression show a vulnerability scenario that may affect to older people taking care of other elderly. PMID:27901220

  8. Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis

    PubMed Central

    Bayen, E.; Papeix, C.; Pradat-Diehl, P.; Lubetzki, C.; Joël, M. E.

    2015-01-01

    Background. Home care for patients with Multiple Sclerosis (MS) relies largely on informal caregivers (ICs). Methods. We assessed ICs objective burden (Resource Utilization in Dementia measuring informal care time (ICT)) and ICs subjective burden (Zarit Burden Inventory (ZBI)). Results. ICs (N = 99) were spouses (70%), mean age 52 years, assisting disabled patients with a mean EDSS (Expanded Disability Status Scale) of 5.5, with executive dysfunction (mean DEX (Dysexecutive questionnaire) of 25) and a duration of MS ranging from 1 to 44 years. Objective burden was high (mean ICT = 6.5 hours/day), mostly consisting of supervision time. Subjective burden was moderate (mean ZBI = 27.3). Multivariate analyses showed that both burdens were positively correlated with higher levels of EDSS and DEX, whereas coresidency and IC's female gender correlated with objective burden only and IC's poor mental health status with subjective burden only. When considering MS aggressiveness, it appeared that both burdens were not correlated with a higher duration of MS but rather increased for patients with severe and early dysexecutive function and for patients classified as fast progressors according to the Multiple Sclerosis Severity Score. Conclusion. Evaluation of MS disability course and IC's personal situation is crucial to understand the burden process and to implement adequate interventions in MS. PMID:26078487

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

    PubMed

    Yeh, Pi-Ming; Chang, Yuanmay

    2015-10-01

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

  10. Factors associated with caregiver burden among pharmacotherapy-treated children/adolescents with ADHD in the Caregiver Perspective on Pediatric ADHD survey in Europe

    PubMed Central

    Fridman, Moshe; Banaschewski, Tobias; Sikirica, Vanja; Quintero, Javier; Erder, M Haim; Chen, Kristina S

    2017-01-01

    Background Burden on caregivers of children/adolescents with attention-deficit/hyperactivity disorder (ADHD) is multidimensional, but incompletely understood. Objective To analyze caregiver burden across the concepts of work, social/family life, and parental worry/stress, in relation to selected contributing factors. Methods The online Caregiver Perspective on Pediatric ADHD survey was fielded in ten European countries. Analysis included children/adolescents (6–17 years) who were receiving/had received ADHD pharmacotherapy in the previous 6 months. Caregivers recorded their child’s/adolescent’s symptoms “on”/“off” medication (ie, when the caregiver reported that the child/adolescent forgot/chose not to take medication, before the onset of medication effect, or medication worn off). Effects of ADHD severity, comorbidities, and medication adherence on each burden outcome were assessed (multiple regression models). Results In total, 2,326 caregivers were included (children/adolescents’ mean age: 11.5 years, 80% male). Caregivers reported missed/altered work, avoiding social activity, increased parental worry/stress, and strain on family life, despite using ADHD pharmacotherapy. Child/adolescent comorbidities and ADHD severity were significantly related to all burden concepts measured; the strongest comorbidity associations were with altered work (odds ratios [ORs] =1.68 [95% confidence interval {CI} 1.33, 2.12], 1.87 [1.37, 2.54], 3.47 [2.51, 4.78] for 1, 2, 3+ comorbidities, respectively) and planning the day around the child/adolescent (OR =1.42 [95% CI 1.17, 1.72], 1.73 [1.33, 2.15], 2.65 [1.99, 3.53]); the strongest severity associations were: quitting a job (OR =1.41 [95% CI 1.26, 1.59]) and planning a day around the child/adolescent (OR =1.26 [95% CI 1.20, 1.32]). Increased medication adherence was most associated with reducing the caregiver burden for altered work (OR =0.57 [95% CI 0.45, 0.72]), worrying about how they are being perceived as a

  11. Confirmatory Factor Analysis of a Brief Version of the Zarit Burden Interview in Black and White Dementia Caregivers

    ERIC Educational Resources Information Center

    Flynn Longmire, Crystal V.; Knight, Bob G.

    2011-01-01

    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…

  12. Burden and Cognitive Appraisal of Stroke Survivors' Informal Caregivers: An Assessment of Depression Model With Mediating and Moderating Effects.

    PubMed

    Tsai, Yi-Chen; Pai, Hsiang-Chu

    2016-04-01

    This study proposes and evaluates a model of depression that concerns the role of burden and cognitive appraisal as mediators or moderators of outcomes among stroke survivor caregivers. A total of 105 informal caregivers of stroke survivor completed the self-report measures of Caregiver Burden Inventory, Center for Epidemiologic Studies Depression Scale, and Cognitive Impact of Appraisal Scale. The Glasgow Coma Scale and Barthel Index were used by the researcher to examine the physical functional status of the survivor. Partial least squares (PLS) path modeling was used to estimate the parameters of a depression model that included mediating or moderating effects. The model shows that burden and impact of cognitive appraisal have a significant direct and indirect impact on depression, while survivor physical functional status does not have a direct impact. The model also demonstrates that burden and impact of cognitive appraisal separately play a mediating role between survivor physical functional status and caregiver depression. In addition, cognitive appraisal has a moderating influence on the relationship between burden and depression. Overall, survivor physical functional status, burden, and cognitive appraisal were the predictors of caregiver depression, explaining 47.1% of the variance. This study has shown that burden and cognitive appraisal are mediators that more fully explain the relationship between patient severity and caregiver depression.

  13. Physical activity attenuates neuropsychiatric disturbances and caregiver burden in patients with dementia

    PubMed Central

    Christofoletti, Gustavo; Oliani, Merlyn Mércia; Bucken-Gobbi, Lílian Teresa; Gobbi, Sebastião; Beinotti, Fernanda; Stella, Florindo

    2011-01-01

    INTRODUCTION: A significant benefit from physical activity has recently been described in some patients who suffer from neurodegenerative diseases. OBJECTIVE: To assess the effects of physical activity on neuropsychiatric disturbances in demented patients and on the mental burden of their caregivers. METHODS: Assisted by a public geriatric psychiatry clinical unit, we studied 59 patients with dementia. Patients were divided into three groups according to their diagnosis and level of physical activity. Data were assessed through a semi-structured interview. Patients were evaluated with the Neuropsychiatric Inventory, the Mini-Sleep Questionnaire and the Baecke Questionnaire. The data were statistically analyzed using the Mann-Whitney U test and linear regression, with the level of significance set at 5%. RESULTS: Patients with Alzheimer's or vascular dementia who engaged in physical activity had fewer neuropsychiatric symptoms than those who did not. When compared to the control group, the caregivers of patients with vascular dementia who engaged in physical activity had a reduced burden. CONCLUSION: The regular practice of physical activity seems to contribute to a reduction in neuropsychiatric symptoms in dementia patients and to attenuate the burden of the caregivers of those patients. PMID:21655755

  14. Declining Patient Functioning and Caregiver Burden/Health: The Minnesota Stroke Survey-Quality of Life after Stroke Study

    ERIC Educational Resources Information Center

    Nelson, Melissa M.; Smith, Maureen A.; Martinson, Brian C.; Kind, Amy; Luepker, Russell V.

    2008-01-01

    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…

  15. Family caregivers' subjective experiences of satisfaction in dementia care: aspects of burden, subjective health and sense of coherence.

    PubMed

    Andrén, Signe; Elmståhl, Sölve

    2005-06-01

    Family caregivers experience both positive and negative reactions in caregiving situations. There has been considerably less published about the positive aspects, however. The general aim of this study was to explore a previously developed instrument to study rewards gained by caregivers and to determine the factors associated with satisfaction in family members caring for patients with dementia living at home. The study group consisted of 153 such family members. Standardized interview schedules exploring different background characteristics, and instruments for assessment of the degree of dementia in the patients and the caregivers' total burden and degree of satisfaction were used. Factorial analysis of the Caregiver's Assessment of Satisfactions Index was performed and it became more specific for conditions of dementia when it was reduced. Stressors as measured by the Caregiver Burden scale and satisfaction can coexist and assess different aspects of the caregiver's situation. The caregiver can perceive both moderate burden and great satisfaction at the same time, and further studies may help to broaden our understanding of how we can reduce the degree of burden whilst increasing the sense of satisfaction.

  16. Economic burden to primary informal caregivers of hospitalized older adults in Mexico: a cohort study

    PubMed Central

    2013-01-01

    Background The burden of out of pocket spending for the Mexican population is high compared to other countries. Even patients insured by social security institutions have to face the cost of health goods, services or nonmedical expenses related to their illness. Primary caregivers, in addition, experience losses in productivity by taking up responsibilities in care giving activities. This situation represents a mayor economic burden in an acute care setting for elderly population. There is evidence that specialized geriatric services could represent lower overall costs in these circumstances and could help reduce these burdens. The aim of this study was to investigate economic burden differences in caregivers of elderly patients comparing two acute care services (Geriatric and Internal Medicine). Specifically, economic costs associated with hospitalization of older adults in these two settings by evaluating health care related out of pocket expenditures (OOPE), non-medical OOPE and indirect costs. Methods A comparative analysis of direct and indirect costs in hospitalised elderly patients (60-year or older) and their primary informal caregivers in two health care settings, using a prospective cohort was performed. Economic burden was measured by out of pocket expenses and indirect costs (productivity lost) due to care giving activities. The analysis included a two-part model, the first one allowing the estimation of the probability of observing any health care related and non-medical OOPE; and the second one, the positive observations or expenditures. Results A total of 210 subjects were followed during their hospital stay. Of the total number of subjects 95% reported at least one non-medical OOPE, being daily transportation the most common expense. Regarding medical OOPE, medicines were the most common expense, and the mean numbers of days without income were 4.12 days. Both OOPE and indirect costs were significantly different between type of services, with less

  17. Caregiving burden and parent-child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagement.

    PubMed

    Carona, Carlos; Silva, Neuza; Crespo, Carla; Canavarro, Maria Cristina

    2014-12-01

    The aim of this study was to analyze the direct and indirect effects, via parents' behavioral disengagement coping, of caregiving burden on the quality of life (QL) of parents and their children with neurodevelopmental conditions. Self-completion questionnaires on the target variables were administered to a sample of 156 parents who had a child with a neurodevelopmental condition, namely epilepsy (n = 65) and cerebral palsy (n = 91). Structural equation modeling was used to test a mediation model and ascertain direct and indirect effects among study variables. Significant direct effects of caregiving burden on parents' and their children's QL were found. Additionally, caregiving burden had a significant indirect effect on parents' QL, via behavioral disengagement, but not on their children's QL. Finally, this model was found to be invariant across conditions and patients' age groups. Caregiving burden may be elected as a strategic intervention target to improve parent-child QL outcomes in neuropediatric settings. Parents should be encouraged to avoid or reduce behavioral disengagement coping in relation to their caregiving stress, and alternatively adopt active coping strategies that may positively affect their children's QL and impede or attenuate the deleterious effects of caregiving burden on their own QL.

  18. Burdens and psychological health of family caregivers of people with schizophrenia in two Chinese metropolitan cities: Hong Kong and Guangzhou.

    PubMed

    Cw Lam, Paul; Ng, Petrus; Tori, Christopher

    2013-12-01

    Family members charged with the care of those suffering from schizophrenia experience considerable stress due to their multiple responsibilities. Research regarding the burdens of caregiving is scant in Hong Kong and China. The present study quantified the association of the duties of caregivers with mental health symptoms in two Asian cities having distinct health care systems (i.e., Hong Kong and Guangzhou, China). Thirty nine caregivers in Hong Kong and 70 caregivers in Guangzhou were recruited from nongovernmental mental health organizations. They were assessed using the Chinese version of the Involvement Evaluation Questionnaire and the General Health Questionnaire. While the Guangzhou family caregivers had a significantly higher burden than the Hong Kong sample, there was no significant difference in the psychological health status of family caregivers in the two cities. Result of correlational analyses, however, revealed high associations between burden of care variables and the psychological health of the caregivers. Findings for the present study have implications regarding the physical and mental health needs of those caring for seriously disturbed relatives.

  19. The burden and quality of life of caregivers of sickle cell anemia patients taking hydroxyurea versus those not taking hydroxyurea

    PubMed Central

    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

    2012-01-01

    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

  20. Mapping the caregiving process in paediatric asthma: Parental burden, acceptance and denial coping strategies and quality of life.

    PubMed

    Silva, Neuza; Crespo, Carla; Carona, Carlos; Canavarro, Maria Cristina

    2015-01-01

    Based on a multidimensional model of the caregiving process, the main goal of this study was to examine the direct and indirect links, via acceptance and denial coping, between the caregiving burden and the quality of life (QoL) in parents of children with asthma. The sample was composed of 182 parents of a child/adolescent between 8 and 18 years of age with a clinical diagnosis of asthma. Data were obtained via self-report questionnaires assessing the caregiving burden, acceptance and denial coping strategies and QoL. Results from structural equation modelling indicated a good fit for the mediation model, which explained 30% of the variability of the parents' QoL. Higher levels of caregiving burden were negatively and indirectly associated with the parents' QoL, via less use of acceptance and greater use of denial coping strategies. Multigroup analyses ascertained the invariance of these links across the children's asthma severity, age and socio-economic groups. These findings emphasise acceptance and denial as important coping mechanisms in the caregiving process. Thus, broad-spectrum family-centred interventions in paediatric asthma settings can target the development of the parents' coping tendencies characterised by greater acceptance and less denial as a way of reappraising caregiving demands as less burdensome and improving their QoL.

  1. The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden

    PubMed Central

    Torabi Chafjiri, Razieh; Navabi, Nasrin; Shamsalinia, Abbas; Ghaffari, Fatemeh

    2017-01-01

    Introduction Stroke is a chronic condition that necessitates multidimensional and overwhelming care. The caregivers of stroke patients are faced with various stressors that can threaten different aspects of their health, especially their mental health. Spiritual attitude and being spiritually oriented contribute significantly to mental health and can be used as a strategy for adapting to the stressful events that are part of the role of caregiving. This study was therefore conducted to investigate the relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden. Methods This descriptive cross-sectional study was conducted in 2016. The study population consisted of all the family caregivers of older patients with stroke presenting to health care centers and nursing service companies of Gilan Province in Iran. The participants were selected through convenience sampling and consisted of 407 participants. Data were collected using the Spiritual Attitude Scale and the Caregiver Burden Inventory and were then analyzed in SPSS-18 using Pearson’s correlation coefficient at a significance level of 0.05. Results The results showed that 88.9% of the caregivers were females. The mean age of the participants was 38.3±8.8 years. The duration of caregiving was <5 years in 84.4% of the participants, while its mean was 4.2±2.5 years. The mean score of spiritual attitude was 108.77±6.20. The majority of the participants (49.3%) had moderate and relatively favorable spiritual attitude (a score of 72–120), 27.8% had high or favorable spiritual attitude; 8.7% had mild burden, 54.4% had moderate burden and 37% had favorable burden. The mean score of burden was 28±12.75. A statistically significant positive relationship was observed in this study between the mean score of spiritual attitude and the total score of burden in all its dimensions, namely, time dependence, as well as the developmental, physical, social and

  2. Use of psychotropic medications by caregivers of elderly patients with dementia: is this a sign of caregiver burden?

    PubMed

    Camargos, Einstein Francisco; Souza, Andrea Brígida; Nascimento, Aline Silva; Morais-E-Silva, Alessandra Cicari; Quintas, Juliana Lima; Louzada, Luciana Lilian; Medeiros-Souza, Patricia

    2012-03-01

    This study evaluated the consumption of psychotropic medications by caregivers of elderly patients with or without dementia. This was a cross-sectional study conducted at all geriatric units in Brasília, Brazil, during a two-month period. Structured interviews were performed with 311 caregivers of people with or without dementia and they completed questionnaires. Among the caregivers, 196 (63%) were caregivers of patients with dementia and 115 (37%) were caregivers of patients without dementia. Forty-four caregivers (14.1%) were taking psychotropic drugs (benzodiazepines or antidepressants), and this usage was more frequent among caregivers of patients with dementia (p<0.01). Twenty-two caregivers of patients with dementia (11.4%) had used sleeping pills after beginning care, compared with only five (4.3%) caregivers of patients without dementia (p<0.01). In conclusion, this study found that caregivers of patients with dementia took psychotropic drugs (benzodiazepines and antidepressants) more frequently than the ones of patients without dementia.

  3. Caregiver Burden as People with Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder Transition into Adolescence and Adulthood in the United Kingdom

    ERIC Educational Resources Information Center

    Cadman, Tim; Eklund, Hanna; Howley, Deirdre; Hayward, Hannah; Clarke, Hanna; Findon, James; Xenitidis, Kiriakos; Murphy, Declan; Asherson, Philip; Glaser, Karen

    2012-01-01

    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…

  4. Adjustment Difficulties and Caregiving Burdens Faced by College Students with a Parent with Bipolar or Depressive Disorders

    ERIC Educational Resources Information Center

    Crandall, Erin K.; Ruggero, Camilo J.; Bain, Kathleen; Kilmer, Jared

    2014-01-01

    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…

  5. Caregiving burden and uplifts: a contradiction or a protective partnership for the quality of life of parents and their children with asthma?

    PubMed

    Silva, Neuza; Carona, Carlos; Crespo, Carla; Canavarro, Maria Cristina

    2015-04-01

    Parental caregiving in the context of pediatric chronic conditions is a multifaceted experience that encompasses negative (burdens) and positive dimensions (uplifts), which may support risk and protective processes that influence family adaptation. This study aimed to examine the caregiving experience of parents caring for a child with asthma and the moderating role of caregiving uplifts on the associations between caregiving burden and quality of life (QoL) of parents and their children. Participants were 180 dyads of children/adolescents with asthma between 8 and 18 years of age and one of their parents. The parents reported on caregiving burden and uplifts and on their QoL, and the children/adolescents completed a self-report measure of generic QoL. Results showed that although parents of children with intermittent asthma and parents of younger children presented higher levels of caregiving burden, noncontrolled asthma was the only clinical variable representing a significant risk factor for decreased QoL in children. Significant negative and positive associations were found between burden dimensions and QoL and between caregiving uplifts and QoL, respectively, in parents and children. Additionally, caregiving uplifts moderated the negative link between relationship burden and parents' QoL. These results suggest that, far from being contradictory, caregiving uplifts may co-occur with high levels of burden and may constitute a protective factor against the deleterious effect of the caregiving burden on parents' QoL and a resource that directly contributes to children's QoL. This risk-resistance approach to family caregiving may contribute to operationalizing strength-based interventions in the context of pediatric asthma.

  6. Linking family cohesion and flexibility with expressed emotion, family burden and psychological distress in caregivers of patients with psychosis: A path analytic model.

    PubMed

    Koutra, Katerina; Simos, Panagiotis; Triliva, Sofia; Lionis, Christos; Vgontzas, Alexandros N

    2016-06-30

    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.

  7. Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia.

    PubMed

    Stensletten, Kari; Bruvik, Frøydis; Espehaug, Birgitte; Drageset, Jorunn

    2016-11-01

    Family members are often the care providers of individuals with dementia, and it is assumed that the need for this will increase. There has been little research into the association between the burden of care and the caregiver's sense of coherence or receipt of social support. This study examined the relationship between the social support subdimensions and sense of coherence and the burden of care among older people giving care to a partner with dementia. The study was a cross-sectional observation study of 97 individuals, ≥65 years old and living with a partner who had symptoms of dementia. We used the Informant Questionnaire on Cognitive Decline in the Elderly, the Relative Stress Scale, the Social Provisions Scale, the Sense of Coherence Scale, and a questionnaire on sociodemographic variables. We used multiple regression analysis in a general linear model procedure. We defined statistical significance as p < 0.05. With adjustments for sociodemographic variables, the association with burden of care was statistically significant for the subdimension attachment (p < 0.01) and for sense of coherence (p < 0.001). The burden of care was associated with attachment and with sense of coherence. Community nurses and other health professionals should take necessary action to strengthen attachment and sense of coherence among the caregivers of people with dementia. Qualitative studies could provide deeper understanding of the variation informal caregivers experience when living together with their partner with dementia.

  8. Differences in Rate of Cognitive Decline and Caregiver Burden between Alzheimer’s Disease and Vascular Dementia: a Retrospective Study

    PubMed Central

    Pilon, Marie-Hélène; Poulin, Stéphane; Fortin, Marie-Pierre; Houde, Michèle; Verret, Louis; Bouchard, Rémi W.; Laforce, Robert

    2016-01-01

    Few studies have explored the rate of cognitive decline and caregiver burden within the context of a specialized memory clinic. When this was done, the focus was largely on functional decline related to Alzheimer’s disease (AD). Our goal was to compare the longitudinal decline of AD patients to those with Vascular Dementia (VaD) on Mini-Mental State Examination (MMSE). We further explored the differential impact on caregiver burden. We retrospectively studied 237 charts from patients seen at our Memory Clinic between 2006 and 2012. The data was collected over 17 years. Cohorts were formed by excluding conditions other than AD and VaD, and including patients who had been assessed at least twice with the MMSE (AD: n = 83; mean age: 67.7 yo; VaD: n = 32; mean age: 73.3yo). A small group of 36 caregivers was surveyed by phone to explore caregiver burden. Results indicated that the natural history of MMSE changes in AD patients differed significantly from that of patients with VaD (F = 10.41, p<0.0014), with AD patients showing more cognitive decline over time. Sadness, stress/anxiety, fatigue, and sleep disorders were reported as the main preoccupations by caregivers and its impact was rated as ‘severe’ in 50% of cases. Altogether, this study provides further insight into the natural history of cognitive decline in AD and VaD. Future studies should explore the progression of dementing disorders in larger cohorts using prospective methodological designs. PMID:27747317

  9. Influence of neuroticism, ethnicity, familism, and social support on perceived burden in dementia caregivers: pilot test of the transactional stress and social support model.

    PubMed

    Shurgot, Gia Robinson; Knight, Bob G

    2005-11-01

    In this study we assessed the new transactional stress and social support model, postulating the role of neuroticism, ethnicity, familism, and social support in perceived burden in dementia caregivers. We used a convenience sample (N=77) of African American and White dementia caregivers. Results substantiated interrelationships among social support variables, and the influence of perceived positive social support on burden. Neuroticism was related to the perception of positive social support and burden. Results corroborated the model, focusing on neuroticism and quality of social support in modeling perceived burden in family caregivers. Findings call attention to the role of presumably long-standing individual differences in neuroticism that influence caregiver appraisals of stress and social support.

  10. Cross-national differences in the prevalence and correlates of burden among older family caregivers in the WHO World Mental Health (WMH) Surveys

    PubMed Central

    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.

    2014-01-01

    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

  11. Defining the Burden and Measuring Resource Utilization (Part 1 of a Working Caregivers Feature)

    ERIC Educational Resources Information Center

    Shadden, Barbara; Powers, Melissa; DiBrezzo, Ro

    2004-01-01

    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…

  12. Structured interviews examining the burden, coping, self-efficacy, and quality of life among family caregivers of persons with dementia in Singapore.

    PubMed

    Tay, Kay Chai Peter; Seow, Chuen Chai Dennis; Xiao, Chunxiang; Lee, Hui Min Julian; Chiu, Helen F K; Chan, Sally Wai-Chi

    2016-03-01

    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.

  13. Control Synthesis of Discrete-Time T-S Fuzzy Systems: Reducing the Conservatism Whilst Alleviating the Computational Burden.

    PubMed

    Xie, Xiangpeng; Yue, Dong; Zhang, Huaguang; Peng, Chen

    2016-07-01

    The augmented multi-indexed matrix approach acts as a powerful tool in reducing the conservatism of control synthesis of discrete-time Takagi-Sugeno fuzzy systems. However, its computational burden is sometimes too heavy as a tradeoff. Nowadays, reducing the conservatism whilst alleviating the computational burden becomes an ideal but very challenging problem. This paper is toward finding an efficient way to achieve one of satisfactory answers. Different from the augmented multi-indexed matrix approach in the literature, we aim to design a more efficient slack variable approach under a general framework of homogenous matrix polynomials. Thanks to the introduction of a new extended representation for homogeneous matrix polynomials, related matrices with the same coefficient are collected together into one sole set and thus those redundant terms of the augmented multi-indexed matrix approach can be removed, i.e., the computational burden can be alleviated in this paper. More importantly, due to the fact that more useful information is involved into control design, the conservatism of the proposed approach as well is less than the counterpart of the augmented multi-indexed matrix approach. Finally, numerical experiments are given to show the effectiveness of the proposed approach.

  14. The effect of a culturally-informed therapy on self-conscious emotions and burden in caregivers of patients with schizophrenia: A randomized clinical trial

    PubMed Central

    Weisman de Mamani, Amy; Suro, Giulia

    2015-01-01

    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

  15. Alleviating emotional exhaustion in oncology nurses: an evaluation of Wellspring's "Care for the Professional Caregiver Program".

    PubMed

    Edmonds, Claire; Lockwood, Gina M; Bezjak, Andrea; Nyhof-Young, Joyce

    2012-03-01

    A high level of burnout has been demonstrated in oncologists, nurses, and other health professionals. Interventions developed in response demonstrate mixed results. Wellspring, a community cancer support organization, has developed a 1-day session called Care for the Professional Caregiver Program (CPCP) and has delivered it to over 700 healthcare workers. The present study assessed the effects of the CPCP on three groups of oncology nurses (pediatric, surgical, and general oncology staff) and one group of nurse managers. Subjects completed the Maslach burnout inventory (MBI), the General health questionnaire (GHQ) and the short form of the Marlowe-Crowne social desirability scale (M-C) prior to receiving the intervention. They then completed the MBI and GHQ at 1-month and 7-month follow-ups. Six months after the original session, a small subset of subjects was randomly selected to participate in a 1-day CPCP booster session. At baseline, one third of the nurses showed high burnout on the MBI. The nurses demonstrated a significant decrease in emotional exhaustion and an improvement on the GHQ, at the 1-month follow-up testing (p = 0.003 and 0.001, respectively) and 7-month follow-up testing (p = 0.002 and 0.001). The booster session proved difficult to deliver because of institutional scheduling problems due to nurse shortages, so only a small percentage (22%) of the sample participated; however, it was well received. Thus, the CPCP is effective in ameliorating emotional exhaustion, an intrinsic aspect of burnout.

  16. Stress and Burden among Caregivers of Patients with Lewy Body Dementia

    ERIC Educational Resources Information Center

    Leggett, Amanda N.; Zarit, Steven; Taylor, Angela; Galvin, James E.

    2011-01-01

    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…

  17. Stirring the Pot: Can Dietary Modification Alleviate the Burden of CKD?

    PubMed Central

    Snelson, Matthew; Clarke, Rachel E.; Coughlan, Melinda T.

    2017-01-01

    Diet is one of the largest modifiable risk factors for chronic kidney disease (CKD)-related death and disability. CKD is largely a progressive disease; however, it is increasingly appreciated that hallmarks of chronic kidney disease such as albuminuria can regress over time. The factors driving albuminuria resolution remain elusive. Since albuminuria is a strong risk factor for GFR loss, modifiable lifestyle factors that lead to an improvement in albuminuria would likely reduce the burden of CKD in high-risk individuals, such as patients with diabetes. Dietary therapy such as protein and sodium restriction has historically been used in the management of CKD. Evidence is emerging to indicate that other nutrients may influence kidney health, either through metabolic or haemodynamic pathways or via the modification of gut homeostasis. This review focuses on the role of diet in the pathogenesis and progression of CKD and discusses the latest findings related to the mechanisms of diet-induced kidney disease. It is possible that optimizing diet quality or restricting dietary intake could be harnessed as an adjunct therapy for CKD prevention or progression in susceptible individuals, thereby reducing the burden of CKD. PMID:28287463

  18. Self-Efficacy Is Associated with Less Burden and More Gains from Behavioral Problems of Alzheimer's Disease in Hong Kong Chinese Caregivers

    ERIC Educational Resources Information Center

    Cheng, Sheung-Tak; Lam, Linda C. W.; Kwok, Timothy; Ng, Natalie S. S.; Fung, Ada W. T.

    2013-01-01

    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…

  19. Similarities amid the Difference: Caregiving Burden and Adaptation Outcomes in Dyads of Parents and Their Children with and without Cerebral Palsy

    ERIC Educational Resources Information Center

    Carona, C.; Crespo, C.; Canavarro, M. C.

    2013-01-01

    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…

  20. Similarities amid the difference: caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy.

    PubMed

    Carona, C; Crespo, C; Canavarro, M C

    2013-03-01

    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 children/adolescents and one of their parents (total N=420), divided in 93 dyads of children/adolescents with cerebral palsy and 117 dyads of children/adolescents with no medical diagnosis. Data on caregiving burden, social support and adaptation outcomes were obtained through self-report questionnaires. Caregiving burden was linked to parents and their children's psychological maladjustment and quality of life both directly (except for children's quality of life) and indirectly through social support. Findings were invariant across clinical and healthy subsamples. Caregiving burden may influence adaptation outcomes of children/adolescents with CP and their parents both directly and via their social support perceptions. These patterns are similar to those observed in typically developing children/adolescents.

  1. A Disproportionate Burden of Care: Gender Differences in Mental Health, Health-Related Quality of Life, and Social Support in Mexican Multiple Sclerosis Caregivers

    PubMed Central

    Perrin, Paul B.; Panyavin, Ivan; Morlett Paredes, Alejandra; Aguayo, Adriana; Macias, Miguel Angel; Rabago, Brenda; Picot, Sandra J. Fulton; Arango-Lasprilla, Juan Carlos

    2015-01-01

    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

  2. A systematic review of the psychobiological burden of informal caregiving for patients with dementia: Focus on cognitive and biological markers of chronic stress.

    PubMed

    Allen, Andrew P; Curran, Eileen A; Duggan, Áine; Cryan, John F; Chorcoráin, Aoife Ní; Dinan, Timothy G; Molloy, D William; Kearney, Patricia M; Clarke, Gerard

    2017-02-01

    As the physiological impact of chronic stress is difficult to study in humans, naturalistic stressors are invaluable sources of information in this area. This review systematically evaluates the research literature examining biomarkers of chronic stress, including neurocognition, in informal dementia caregivers. We identified 151 papers for inclusion in the final review, including papers examining differences between caregivers and controls as well as interventions aimed at counteracting the biological burden of chronic caregiving stress. Results indicate that cortisol was increased in caregivers in a majority of studies examining this biomarker. There was mixed evidence for differences in epinephrine, norepinephrine and other cardiovascular markers. There was a high level of heterogeneity in immune system measures. Caregivers performed more poorly on attention and executive functioning tests. There was mixed evidence for memory performance. Interventions to reduce stress improved cognition but had mixed effects on cortisol. Risk of bias was generally low to moderate. Given the rising need for family caregivers worldwide, the implications of these findings can no longer be neglected.

  3. Identifying at-risk dementia caregivers following institutionalization: the nursing home admission-burden and nursing home admission-depression prognostic tools.

    PubMed

    Gaugler, Joseph E; Mittelman, Mary S; Hepburn, Kenneth; Newcomer, Robert

    2014-08-01

    The current study developed prognostic tools to identify dementia caregivers at-risk for clinically relevant burden or depressive symptoms following nursing home admission (NHA) of their family members. A retrospective, longitudinal design was used that included 1,610 dementia caregivers who provided data prior to and up to 6 months following nursing home admission. Response operant characteristic (ROC) curves were constructed to test and validate two prognostic tools: the NHA-Burden and NHA-Depression tools. An ROC curve yielded a sensitivity of 77% and a specificity of 62.5% at a cutoff score of 5.41 for the NHA-Burden Prognostic tool. A second ROC curve indicated a sensitivity of 75.4% and a specificity of 62.5% at a cutoff score of 7.45 for the NHA-Depression tool. Clinicians may wish to utilize cutpoints on the NHA-Burden and NHA-Depression tools to ensure that more persons who are at-risk for clinically significant burden or depression during NHA are identified.

  4. Variation in Socio-Economic Burden for Caring of Children with Autism Spectrum Disorder in Oman: Caregiver Perspectives

    ERIC Educational Resources Information Center

    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

    2013-01-01

    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)…

  5. Depression among Low-Income Female Muslim Uyghur and Kazakh Informal Caregivers of Disabled Elders in Far Western China: Influence on the Caregivers’ Burden and the Disabled Elders’ Quality of Life

    PubMed Central

    Wu, Fuchen; Chen, Xuefeng; Wang, Wenting; Yang, Xue

    2016-01-01

    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

  6. Caregiver distress in parkinsonism.

    PubMed

    Cifu, David X; Carne, William; Brown, Rashelle; Pegg, Phillip; Ong, Jason; Qutubuddin, Abu; Baron, Mark S

    2006-01-01

    This study examined the frequency and degree of caregiver burden in persons with parkinsonism, a group of disorders with four primary symptoms that include tremor, rigidity, postural instability, and bradykinesia. We assessed associations between perceived caregiver burden and physical, cognitive, and functional impairments using well-established tools for persons with parkinsonism. The 49 individuals with parkinsonism ranged in age from 61 to 87 (mean = 75), while their caregivers (N = 49) ranged in age from 48 to 83 (mean = 70). The caregivers were predominantly either wives (82%) or daughters (6%), with other family members, friends, and/or neighbors (12%) making up the rest. The caregivers reported a relatively high ability for coping (mean scores = 4.6/6). Caregiver burden was significantly negatively associated with activities of daily living and motoric difficulties as measured on the Unified Parkinson's Disease Rating Scale (UPDRS). Likewise, caregiver burden was negatively associated with caregiver self-reported sleep and coping ability. Results did not demonstrate an association on the UPDRS among mentation, behavior, and mood. We found a significant negative correlation for mentation between the Folstein Mini-Mental Status Examination and caregiver burden measures; however, we did not find this association with the Dementia Rating Scale-2. Patient's self-reported pain and caregiver burden were not associated.

  7. Caregiver Objective Burden and Assessments of Patient-Centered, Family-Focused Care for Frail Elderly Veterans

    ERIC Educational Resources Information Center

    Rose, Julia Hannum; Bowman, Karen F.; O'Toole, Elizabeth E.; Abbott, Katherine; Love, Thomas E.; Thomas, Charles; Dawson, Neal V.

    2007-01-01

    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…

  8. Coping strategies and caregiving outcomes among rural dementia caregivers.

    PubMed

    Sun, Fei; Kosberg, Jordan I; Kaufman, Allan V; Leeper, James D

    2010-08-01

    We studied the coping styles by which family caregivers living in rural areas of Alabama deal with the demands of caring for an older relative with dementia. Data were obtained from a sample of 141 caregivers through the random-digit dialing telephone survey. Two coping styles were identified: deliberate coping and avoidance coping. Deliberate coping was related to higher life satisfaction scores and, avoidance coping was related to lower life satisfaction scores and higher caregiver burden scores. Avoidance coping appeared to moderate the effects of caregiver health on caregiver burden. Social workers should pay greater attention to caregivers with dysfunctional coping styles.

  9. What else should we know about experiencing COPD? A narrative review in search of patients’ psychological burden alleviation

    PubMed Central

    Rzadkiewicz, Marta; Bråtas, Ola; Espnes, Geir Arild

    2016-01-01

    The present paper is a narrative review focusing on the psychological impact, identification of protective factors, and interventions minimizing the psychological burdens of chronic obstructive pulmonary disease (COPD). The research reviews studies on neurocognitive functions, personality, emotional problems, and health-related quality of life. This is done with regard to resources as well as activities enabling or enhancing a patient’s adaptation. PubMed and PsychArticles databases were searched for relevant medical (eg, CODP, emphysema), psychopathology (eg, depression), and psychological (eg, personality) keywords, followed by hand search. After application of the inclusion and exclusion criteria, the search resulted in 82 articles and book chapters. The choice was based on evidence accepted by evidence-based medicine, although at different levels of strength. Psychological experiencing of COPD appears to be very unequally represented with scientific research on emotional problems and functioning decrease significantly outnumbering those addressing resources or effective interventions. As our initial literature search called for an urgent need for further exploration, we have carefully pointed out numerous areas where the knowledge on how to protect or restore psychological well-being among COPD patients should be broadened. PMID:27695316

  10. 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).

    PubMed

    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

    2016-05-01

    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.

  11. Caregiver Well-Being

    PubMed Central

    Dujela, Carren; Smith, André

    2015-01-01

    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

  12. Assessment of Caregiver Inventory for Rett Syndrome.

    PubMed

    Lane, Jane B; Salter, Amber R; Jones, Nancy E; Cutter, Gary; Horrigan, Joseph; Skinner, Steve A; Kaufmann, Walter E; Glaze, Daniel G; Neul, Jeffrey L; Percy, Alan K

    2017-01-28

    Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher's exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach's alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder.

  13. The Role of Unpaid Volunteers in a Group Caregiving Approach: Validation of the Share the Care™ Program.

    PubMed

    Hegener, Amy; Warnock, Sheila; Hokenstad, Alene

    2016-01-01

    Share The Care™ (STC) is a caregiving program that has been guiding people on how to pool their skills and resources to assist someone facing a health, aging, or medical crisis. The purpose of this research was to conduct a descriptive program evaluation to establish STC as an advanced program within the caregiver continuum that helps to alleviate caregiver burnout and isolation through the formation of an organized "caregiving family" for support. A sample of 134 participants completed an online questionnaire and 7 participated in follow-up phone interviews. The data collection was conducted in 2 phases, beginning with an online survey and followed by in-depth phone interviews of a sample of survey participants. The results of the study demonstrate that STC is successful in providing alternative caregiving strategies, helping to prevent isolation among adults living alone, easing burden among caregivers, and improving the overall wellbeing of those involved. A majority of caregivers (83%) reported a decreased sense of burden and 80% became more accepting of their family member's challenge or diagnosis. STC is a replicable caregiving program that has been supported by evidence. Adapting this model could provide benefits to participants and communities.

  14. The influence of caregiving stressors, social support, and caregiving appraisal on marital functioning among African American wife caregivers.

    PubMed

    Chadiha, Letha A; Rafferty, Jane; Pickard, Joseph

    2003-10-01

    Using a stress and coping framework, we examined the influence of caregiving stressors, social support, and caregiving appraisal on the marital functioning of 100 African American wife caregivers. Results of separate multivariate analyses revealed received church support, caregiving burden, and caregiving satisfaction significantly predicted wives' marital functioning, when caregivers' background characteristics (age and education), length of caregiving, whether first marriage, and urban versus rural location were controlled. Receiving church support was associated with increased marital functioning. Lower levels of caregiving burden were associated with increased marital functioning. Higher levels of caregiving satisfaction were associated with increased marital functioning. Findings illuminate wives' caregiving and marital experiences, and have implications for family therapy and future research.

  15. Cancer Caregivers Information Needs and Resource Preferences

    PubMed Central

    Longacre, Margaret L.

    2013-01-01

    This study sought to characterize the need for information about personal psychosocial care, providing direct care, and managing care among cancer caregivers, and explore preferred resources for caregiving information. Methods Data comes from cross-sectional telephone interviews of 1,247 family caregivers, which included 104 cancer caregivers. Results A majority of cancer caregivers expressed one or more information need for each of the three content categories. Four out of ten caregivers expressed needing information about managing physical and emotional stress. A significantly higher percentage of male caregivers reported needing more information pertinent to providing direct care than females. Heightened objective burden was significantly associated with caregivers preferring to receive information from health professionals than informal sources (e.g., Internet), while the opposite was found among caregivers with lower objective burden. Conclusion These findings suggest that specific types of information and resources may be most relevant to specific subgroups of cancer caregivers. PMID:23553000

  16. Caregiving Statistics

    MedlinePlus

    ... Costs; National Alliance for Caregiving and MetLife Mature Market Institute. February 2010 40% to 70% of family ... Costs; National Alliance for Caregiving and MetLife Mature Market Institute. February 2010 73% of family caregivers who ...

  17. Caregiver Depression

    MedlinePlus

    ... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard — and can lead to feelings ...

  18. The cancer caregiving experience of caregivers of Mexican ancestry.

    PubMed

    Juarez, Gloria; Branin, Joan J; Rosales, Monica

    2014-01-01

    The act of providing care may be the same in all ethnic groups, but the way caregiving is defined by family members is influenced by cultural values and beliefs. This study describes the caregiving experience and challenges of caregivers of Mexican ancestry. Qualitative interviews of 20 family caregivers and thematic analysis of transcribed audiotapes identified four themes that characterized their caregiving experience. These themes include an emphasis on family values, a strong commitment to care, difficulties dealing with everyday life realities, and a reliance on spirituality, all of which added to the meaningfulness and burden of caregiving. Further investigation within a cultural context is warranted in the development of interventions and programs to better assist caregivers in coping with the challenges of providing cancer care.

  19. The Effects of Caregiving on the Family.

    ERIC Educational Resources Information Center

    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…

  20. Caregiver Assessment

    ERIC Educational Resources Information Center

    Feinberg, Lynn

    2008-01-01

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

  1. Directory of Education Programs for Caregivers of Elders.

    ERIC Educational Resources Information Center

    Missouri Univ., Kansas City. Center on Rural Elderly.

    Caregiver education and support programs help decrease the stress and burden on family caregivers of the elderly. This directory profiles 72 programs for caregivers of elders. Programs are grouped into the categories of education, respite, and support. Education programs address skills and techniques for caregiving and include program…

  2. Alleviating the environmental heat burden on laying hens by feeding on diets enriched with certain antioxidants (vitamin E and selenium) individually or combined.

    PubMed

    Abd El-Hack, Mohamed E; Mahrose, Khalid; Arif, Muhammad; Chaudhry, Maria Tabassum; Saadeldin, Islam M; Saeed, Muhammad; Soomro, Rab Nawaz; Abbasi, Imtiaz Hussain Raja; Rehman, Zaib Ur

    2017-03-11

    The present study was designed to alleviate the negative biohazards of high ambient temperature on the productive performance and physiological status of laying hens. A total of 135 Bovans laying hens were distributed into nine groups in a 3 × 3 factorial design experiment. Basal diet was supplemented with vitamin E at levels of 0, 250, and 500 mg /kg diet. Within each dietary vitamin E level, each diet was supplemented with sodium selenite as a source of selenium (Se) to supply 0, 0.25, and 0.50 mg Se/kg diet. Results showed that supplementing layer's diet with 500 mg vitamin E/kg was accompanied with the lowest feed consumption (FC) and feed conversion ratio (FCR). The interaction among vitamin E and Se levels exerted significant effects only on FC and FCR. Insignificant differences were observed in egg quality criteria due to the treatments studied. Increasing vitamin E level was associated with a gradual decrease in basophil count and an increase in monocytes. A gradual decrease in the count of each of heterophils, monocytes, and eosinophils was observed with the elevation in the dietary Se level. The combination among vitamin E and Se levels produced a significant effect on all hematological parameters studied. As vitamin E increased, a marked decrease in serum AST and a gradual increase in total lipids, total cholesterol, and calcium were observed. As the level of dietary Se increased, serum total protein, albumin, T4, total cholesterol, and total lipids increased. No significant impacts were detected for the interaction among vitamin E and Se levels on any of blood constituents determined except serum globulin, ALT, and calcium. In conclusion, the combination between vitamin E and Se showed a good ability to alleviate the harmful impacts of heat stress and produced the highest productive performance when compared with the other groups, which exhibit the synergistic effect between the two antioxidants.

  3. Caring for the caregiver.

    PubMed

    Levy, Mitchell M

    2004-07-01

    There are certainly many coping behaviors that may assist ICU caregivers in the process of caring for themselves. Staff support groups,regular interdisciplinary meetings to discuss difficult cases,and bringing trained personnel into the intensive care unit (ICU)environment to offer staff training in communication and conflict resolution skills have been suggested as methods for alleviating caregiver stress. Combining these as well as other tools with a deeper look at the caregiver-patient relationship are important building blocks for creating a sane, healthy environment in the ICU. Over the next years, as the population ages, and as technologic advances continue, the critical care units will play an even more prominent role in health care. Given the threat posed by the severe nursing shortage, it becomes apparent that, to prepare for this increased need for critical care services, efforts must be directed to identify the sources of distress for ICU caregivers and develop focused training programs that alleviate the inevitably strains and pressures that arise in the process of compassionate caring for the critically ill.

  4. Northern Manhattan Hispanic Caregiver Intervention Effectiveness Study: protocol of a pragmatic randomised trial comparing the effectiveness of two established interventions for informal caregivers of persons with dementia

    PubMed Central

    Luchsinger, José A; Burgio, Louis; Mittelman, Mary; Dunner, Ilana; Levine, Jed A; Kong, Jian; Silver, Stephanie; Ramirez, Mildred; Teresi, Jeanne A

    2016-01-01

    Introduction The prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive symptoms. There are several behavioural interventions designed to alleviate stress and depressive symptoms in caregivers of persons with dementia with evidence of efficacy. Two of the best-known interventions are the New York University Caregiver Intervention (NYUCI) and the Resources for Enhancing Alzheimer's Caregivers Health (REACH). The effectiveness of the NYUCI and REACH has never been compared. There is also a paucity of data on which interventions are more effective in Hispanics in New York City. Thus, we proposed the Northern Manhattan Hispanic Caregiver intervention Effectiveness Study (NHiCE), a pragmatic clinical trial designed to compare the effectiveness of adaptations of the NYUCI and the REACH in informal Hispanic caregivers of persons with dementia in New York City. Methods and analysis NHiCE is a 6-month randomised controlled trial comparing the effectiveness of adaptations of the NYUCI and REACH among 200 Hispanic informal adult caregivers of persons with dementia. The planned number of sessions of the NYUCI and REACH are similar. The primary outcome measures are changes from baseline to 6 months in the Zarit Caregiver Burden Scale and Geriatric Depression Scale. Our primary approach to analyses will be intent-to-treat. The primary analyses will use mixed random effects models, and a full information maximum likelihood approach, with sensitivity analyses using generalised estimating equation. Ethics and dissemination NHiCE is approved by the Institutional Review Board of Columbia University Medical Center (protocol AAAM5150). A Data Safety Monitoring Board monitors the progress of the study. Dissemination will include reports of the characteristics of the study participants, as well as a report of the results of the clinical trial. Trial

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed Central

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

    2016-01-01

    Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index—Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale—Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden. PMID:27854287

  7. Caregiving appraisal in schizophrenia: a study from India.

    PubMed

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

    2013-12-01

    This study evaluated caregiving experience in the caregivers of patients with schizophrenia within the framework of the stress-appraisal-coping model. By purposive random sampling, 100 Indian patients with schizophrenia and their primary caregivers were assessed. The patients were assessed on Positive and Negative Symptom Scale (PANSS). Caregivers completed the Scale for Positive Aspects of Caregiving Experience (SPACE), Involvement Evaluation Questionnaire (IEQ), Family Burden Interview (FBI) Schedule, Coping Checklist, Social Support Questionnaire, and General Health Questionnaire (GHQ-12). Path analysis showed that psychological morbidity is mainly determined by subjective experience of burden, which in turn is significantly influenced by severity of psychopathology, time spent per day (in hours) in caregiving and the coping strategies used. Although coping strategies and PANSS do influence objective burden, objective burden itself has no influence on the level of psychological morbidity. Total PANSS score has no direct influence on subjective burden, but acts indirectly through total time spent in caregiving and coping. Caregiver's gain in positive experiences on SPACE scale positively influences subjective burden. The present findings suggest that better control of patients' symptoms would lead to less demand on the caregivers in the form of time and strain on coping abilities and would thus reduce subjective burden and psychological morbidity in the caregivers.

  8. Family caregivers of people with dementia

    PubMed Central

    Brodaty, Henry; Donkin, Marika

    2009-01-01

    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

  9. Cancer Communication and Family Caregiver Quality of Life

    PubMed Central

    Wittenberg, Elaine; Borneman, Tami; Koczywas, Marianna; Del Ferraro, Catherine; Ferrell, Betty

    2017-01-01

    Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH) Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care. PMID:28257110

  10. Caregiver Stress

    MedlinePlus

    ... may take your loved one to an adult day care center or day hospital) The National Eldercare Locator , a service of the U.S. Administration on Aging, can help you find caregiving services in your area. You also can ... care and other caregiving services? Medicare, Medicaid, and private ...

  11. The Caregiving Experience in a Racially Diverse Sample of Cancer Family Caregivers

    PubMed Central

    Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth

    2009-01-01

    The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools. PMID:18772665

  12. THE NATURE AND SCOPE OF STRESSFUL SPOUSAL CAREGIVING RELATIONSHIPS

    PubMed Central

    Davis, Linda Lindsey; Gilliss, Catherine L.; Deshefy-Longhi, Tess; Chestnutt, Deborah H.; Molloy, Margory

    2013-01-01

    The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships however relational difficulties around caregiving are seldom described in the literature. This paper presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease and Parkinson’s disease spousal caregivers enrolled in a home care skill training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of the other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions and care decision making conflicts. PMID:21531858

  13. Caregiver’s burden in pulmonary arterial hypertension: a clinical review

    PubMed Central

    Verma, Sameer; Sayal, Abhineet; Vijayan, V. K.; Rizvi, Syed M.; Talwar, Arunabh

    2016-01-01

    Caregiver’s burden is a multidimensional phenomenon affecting care-givers physically, emotionally and socially. It is critical to examine the burden of caregivers, because of the complex responsibility they have with their partners. There are relatively few studies that have examined factors linked with psychological burden amongst caregivers of pulmonary arterial hypertension (PAH) patients. Hence, it is pertinent to develop a good understanding of these factors and develop appropriate management strategies, modified to assist PAH caregivers. PMID:27807515

  14. Project CARE: A Randomized Controlled Trial of a Behavioral Intervention Group for Alzheimer's Disease Caregivers

    ERIC Educational Resources Information Center

    Gonyea, Judith G.; O'Connor, Maureen K.; Boyle, Patricia A.

    2006-01-01

    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…

  15. Positive aspects of caregiving in schizophrenia: A review

    PubMed Central

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

    2012-01-01

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

  16. Psychometric Properties of the Caregiver Strain Questionnaire (CGSQ) among Caregivers of Children with Autism

    ERIC Educational Resources Information Center

    Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Tworek, Cindy; Patrick, Julie H.; Becker-Cottrill, Barbara

    2012-01-01

    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…

  17. Family Caregiver Alliance

    MedlinePlus

    ... on your schedule. Look for our launch soon! FAMILY CARE NAVIGATOR ─ Click on Your State AL AK ... Group) Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn more Caregiver Research Caregivers exhibit ...

  18. Correlates of well-being among caregivers of long-term community-dwelling stroke survivors.

    PubMed

    Dankner, Rachel; Bachner, Yaacov G; Ginsberg, Gary; Ziv, Arnona; Ben David, Hadar; Litmanovitch-Goldstein, Dalit; Chodick, Gabriel; Balicer, Ran; Tanne, David; Greenberg, Dan

    2016-12-01

    Although caregiving for stroke survivors is usually long-term, most studies on caregivers have generally involved only the first year following the event. We assessed and compared the long-term level of well-being measures among stroke survivors and their caregivers at more than 1 year following the stroke event and examined the associations between well-being, survivors' characteristics, and caregiver burden. We interviewed a convenience sample of 51 community-dwelling stroke survivors, at least 1 year after the last stroke event, and their primary caregivers. Disability of survivors was assessed using the Barthel index and the modified Rankin Scale; health-related quality of life by the SF-36 questionnaire; and depression and anxiety using the Hospital Anxiety Depression Scale. Caregivers filled the SF-36 questionnaire, Hospital Anxiety Depression Scale questionnaire, and the Zarit Burden Interview, which assesses caregiver burden. Caregivers reported low levels of health-related quality of life and high levels of burden, anxiety, and depression. Caregivers' anxiety level was higher than that of the survivors (7.7±5.1 vs. 5.8±4.5, respectively; P=0.02). Anxiety was the only characteristic of caregivers that was associated with overall caregiver burden. Our study suggests that there is a spillover effect of the disease on stroke patients' primary caregivers. Intervention programs for caregivers should focus on their mental state and address their specific needs.

  19. Personality Type as a Determinant of Caregiver Distress: Preliminary Findings Using the Weinberger Assessment Inventory.

    ERIC Educational Resources Information Center

    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…

  20. Educational Support Group in Changing Caregivers' Psychological Elder Abuse Behavior toward Caring for Institutionalized Elders

    ERIC Educational Resources Information Center

    Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti

    2009-01-01

    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…

  1. Physical activity in caregivers: What are the psychological benefits?

    PubMed

    Loi, Samantha M; Dow, Briony; Ames, David; Moore, Kirsten; Hill, Keith; Russell, Melissa; Lautenschlager, Nicola

    2014-01-01

    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.

  2. Parental caregiving of children prior to hematopoietic stem cell transplant.

    PubMed

    Rodday, Angie Mae; Pedowitz, Elizabeth J; Mayer, Deborah K; Ratichek, Sara J; Given, Charles W; Parsons, Susan K

    2012-08-01

    Using the Caregiver Reaction Assessment (CRA), we assessed positive reactions and burdens of the caregiving experience among parental caregivers (n = 189) of children scheduled to undergo hematopoietic stem cell transplant. Although widely used in non-parental caregivers, the CRA has not been used in parents of pediatric patients. Reliability (Cronbach's alpha: .72-.81 vs. .63) and concurrent validity (correlation: .41-.61 vs. .28) were higher for negatively framed than positively framed subscales. Results indicate that the caregiving experience is complex. The parents experienced high caregiver's esteem and moderate family support, but also negative impacts on finances and schedule, and to a lesser degree, health. Compared to non-parental caregivers, parental caregivers experienced higher esteem and more impact on finances and schedule.

  3. Needs of Caregivers of Elderly Attending Day Hospital

    PubMed Central

    Boxall, Jan; McKercher, Grant

    1990-01-01

    A mailed questionnaire was used to assess the time demands and relative stress burden of tasks performed by caregivers to patients attending a geriatric day hospital. Eighty per cent (43 of 54) of the questionnaires were completed. Most (84%) of caregivers were women, and 38% were older than 65 years of age. Fifty-three per cent of care receivers were women; 54% were 80 years of age or older. Most care receivers were related to the caregiver, and 84% lived with them. Activities causing the most stress to caregivers were bathing, bladder control, walking about the home, and travelling outside the home. A significant number of caregivers did not have access to alternate caregivers for relief during the day (18%) or night (26%), or for a weekend (28%) or a week (40%). Sixty-eight per cent of caregivers felt some mental strain as a result of their caregiver role. PMID:21249102

  4. Objective and subjective burden in relatives of patients with schizophrenia and its influence on care relationships in Chile.

    PubMed

    Caqueo-Urízar, Alejandra; Urzúa, Alfonso; Jamett, Patricio Rojas; Irarrazaval, Matias

    2016-03-30

    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.

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

    PubMed

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

    2006-10-01

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

  6. Metachromatic Leukodystrophy: An Assessment of Disease Burden.

    PubMed

    Eichler, Florian S; Cox, Timothy M; Crombez, Eric; Dali, Christine Í; Kohlschütter, Alfried

    2016-11-01

    Metachromatic leukodystrophy is accompanied by severe motor and cognitive dysfunction. This is the first survey of metachromatic leukodystrophy caregiver perspectives to identify relevant clinical/quality-of-life outcomes for patients/caregivers. Interviews and 1 focus group were conducted with 30 caregivers representing 23 patients. Caregivers were asked about their experiences, including diagnostic process, signs/symptoms, symptoms affecting caregivers' and patients' lives, and treatment priorities. Caregivers reported loss of physical autonomy, weight loss, limited social relationships, frequent crying, and challenging sibling relationships. Most troublesome symptoms were immobility (9/30) and respiratory difficulties (6/30). Health care visits were frequent: 8/22 patients had experienced ≥11 hospitalizations since diagnosis, and 14/22 caregivers reported that these lasted ≥4 days. Caregivers also experienced work problems, feelings of fear/sadness, and loss of social relationships. Caregivers/physicians consider a therapy that could improve decline in mobility, pain, cognitive ability, communication, or food intake as conferring the greatest benefit. In conclusion, a so-far-unreported physical/economic burden in these families is presented.

  7. Family caregiving to those with dementia in rural Alabama: racial similarities and differences.

    PubMed

    Kosberg, Jordan I; Kaufman, Allan V; Burgio, Louis D; Leeper, James D; Sun, Fei

    2007-02-01

    This study explored differences and similarities in the experiences of African American and White family caregivers of dementia patients living in rural Alabama. This cross-sectional survey used a caregiving stress model to investigate the interrelationships between caregiving burden, mediators, and outcomes. Random-digit-dialing telephone interviews were used to obtain data on a probability sample of 74 non-Hispanic White and 67 African American caregivers. White caregivers were more likely to be married and older, used acceptance and humor as coping styles, and had fewer financial problems. African American caregivers gave more hours of care, used religion and denial as coping styles, and were less burdened. The authors have developed a methodology for obtaining a representative sample of African American and White rural caregivers. Further investigations are needed of the interactions between urban/rural location and ethnic/racial backgrounds of dementia caregivers for heuristic and applied reasons.

  8. Differences in the Experience of Caregiver Strain between Families Caring for Youth with Substance Use Disorders and Families of Youth with Mental Health Problems

    ERIC Educational Resources Information Center

    Heflinger, Craig Anne; Brannan, Ana Maria

    2006-01-01

    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…

  9. Institutionalization in Taiwan. The role of caregiver gender.

    PubMed

    Kao, Hsueh-Fen Sabrina

    2003-10-01

    The role of caregiver gender in the likelihood of institutionalization of Taiwanese older adults was explored in this study. A sample of 78 male and 69 female primary caregivers of elderly patients who had experienced a stroke at least 6 months prior to the study were interviewed. Logistic regression analyses were applied to examine direct and interaction effects of the elderly adult's functioning the caregiver's available resources, the degree of caregiver burden, perceived public opinion toward institutionalization, and precipitating events on the likelihood of institutionalization among Taiwanese male and female caregivers. Women were more likely to institutionalize the older adult for whom they cared. The proposed model correctly predicted the likelihood of institutionalization of an elderly adult based on male versus female caregivers at the 92% level. Perceived public opinion toward institutionalization was the most significant predictor of institutionalization for both genders. Perceived public opinion toward institutionalization has a strong influence on whether or not caregivers institutionalize an elderly relative. This is consistent with Chinese culture in which public opinion has a much stronger effect on individual behavior than in the United States. American concepts of "minding one's own business" do not exist in Taiwan. It is logical that the older adults' level of functioning would predict the likelihood of institutionalization regardless of caregiver gender. In terms of caregiver characteristics, working hours in male caregivers is more predictive, and the quality of the relationship with the older adult was more predictive of institutionalization for female caregivers.

  10. Why are spousal caregivers more prevalent than nonspousal caregivers as study partners in AD dementia clinical trials?

    PubMed Central

    Cary, Mark S.; Rubright, Jonathan D.; Grill, Joshua D.; Karlawish, Jason

    2014-01-01

    Objectives Most Alzheimer’s disease (AD) caregivers are not spouses and yet most AD dementia trials enroll spousal study partners. This study examines the association between caregiver relationship to the patient and willingness to enroll in an AD clinical trial and how caregiver burden and research attitudes modify willingness. Design Interviews with 103 AD caregivers who met criteria for ability to serve as a study partner. Results 54% of caregivers were spouses or domestic partners and the remaining were adult children. Willingness to enroll a patient in a clinical trial was associated with being a spouse (OR = 2.53, p = 0.01), increasing age (OR = 1.39, p = 0.01), and increasing scores on the Research Attitudes Questionnaire (OR = 1.39, p < 0.001). No measures of caregiver burden or patient health were significant predictors of willingness. In multivariate models both research attitudes (OR = 1.37, p < 0.001) and being a spouse, as opposed to an adult child, (OR = 2.06, p = 0.048) were independently associated with willingness to participate. Conclusions Spousal caregivers had both a higher willingness to participate and a more positive attitude toward research. Caregiver burden had no association with willingness to participate. The strongest predictor of willingness was research attitudes. PMID:24805971

  11. Effects of personality on the transition into caregiving.

    PubMed

    Rohr, Margund K; Wagner, Jenny; Lang, Frieder R

    2013-09-01

    Recent research has emphasized the critical role of personality in the caregiving situation, but not much is known about how individual differences shape the transitions into and out of caregiving. Based on longitudinal data from the German Socio-Economic Panel (SOEP, N= 14,495), we explored how personality is associated with adopting and maintaining the caregiving role. The results revealed that individuals with less emotional stability were more likely to take over the responsibility to provide care. Moreover, care-related personality change was affected by sex and age. In detail, female care entrants were more burdened than their male counterparts, and younger caregivers seemed to adapt better to the caregiving role than older ones. The findings point to the interplay of personality and sociostructural conditions in the caregiving role over time.

  12. Linking family dynamics and the mental health of Colombian dementia caregivers.

    PubMed

    Sutter, Megan; Perrin, Paul B; Chang, Yu-Ping; Hoyos, Guillermo Ramirez; Buraye, Jaqueline Arabia; Arango-Lasprilla, Juan Carlos

    2014-02-01

    This cross-sectional, quantitative, self-report study examined the relationship between family dynamics (cohesion, flexibility, pathology/ functioning, communication, family satisfaction, and empathy) and mental health (depression, burden, stress, and satisfaction with life [SWL]) in 90 dementia caregivers from Colombia. Hierarchical multiple regressions controlling for caregiver demographics found that family dynamics were significantly associated with caregiver depression, stress, and SWL and marginally associated with burden. Within these regressions, empathy was uniquely associated with stress; flexibility with depression and marginally with SWL; and family communication marginally with burden and stress. Nearly all family dynamic variables were bivariately associated with caregiver mental health variables, such that caregivers had stronger mental health when their family dynamics were healthy. Family-systems interventions in global regions with high levels of familism like that in the current study may improve family empathy, flexibility, and communication, thereby producing better caregiver mental health and better informal care for people with dementia.

  13. Caregivers’ burden in patients with COPD

    PubMed Central

    Miravitlles, Marc; Peña-Longobardo, Luz María; Oliva-Moreno, Juan; Hidalgo-Vega, Álvaro

    2015-01-01

    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

  14. Interpersonal Effects of Suffering in Older Adult Caregiving Relationships

    PubMed Central

    Monin, Joan K.; Schulz, Richard

    2009-01-01

    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

  15. The experience of caregivers of people living with serious mental disorders: a study from rural Ghana

    PubMed Central

    Ae-Ngibise, Kenneth Ayuurebobi; Doku, Victor Christian Korley; Asante, Kwaku Poku; Owusu-Agyei, Seth

    2015-01-01

    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

  16. Self-reported impact of caregiving on voluntary home-based caregivers in Mutale Municipality, South Africa

    PubMed Central

    Netshandama, Vhonani O.; Mudau, Makondelela J.

    2016-01-01

    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

  17. The Experience of High Levels of Grief in Caregivers of Persons with Alzheimer's Disease and Related Dementia

    ERIC Educational Resources Information Center

    Sanders, Sara; Ott, Carol H.; Kelber, Sheryl T.; Noonan, Patricia

    2008-01-01

    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…

  18. Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work.

    PubMed

    van Campen, Cretien; de Boer, Alice H; Iedema, Jurjen

    2013-03-01

    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.

  19. Caregiving and Ethnicity.

    ERIC Educational Resources Information Center

    Glicksman, Allen

    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…

  20. Transitions in Spousal Caregiving.

    ERIC Educational Resources Information Center

    Burton, Lynda C.; Zdaniuk, Bozena; Schulz, Richard; Jackson, Sharon; Hirsch, Calvin

    2003-01-01

    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…

  1. Frequency and difficulty in caregiving among spouses of individuals with cancer: effects of adult attachment and gender.

    PubMed

    Kim, Youngmee; Carver, Charles S

    2007-08-01

    How caregivers relate to care recipients can affect how well care is provided and how much burden is experienced in providing it. We conceptualized the relationship of spousal caregivers via adult attachment theory and examined how attachment qualities of caregivers related to level of caregiving involvement and difficulties in caregiving. Gender differences in the associations were also explored. From participants in the ACS Quality of Life Survey for Caregivers, 400 spousal caregivers provided valid data for the study variables. Findings indicated that frequency of various types of care was a joint function of attachment orientation and gender. In contrast, the difficulty that caregivers experienced in providing care related directly to attachment, without moderation by gender. Our findings suggest that ineffective caregivers of cancer patients, who can be identified by their attachment orientation and/or gender, may benefit from educational programs to improve their caregiving skills and to encourage them to utilize resources from other family members or community.

  2. The Sociocultural Context of Caregiving Experiences for Vietnamese Dementia Family Caregivers

    PubMed Central

    Nguyen, Kim Hanh; Dao, To Nhu; Vu, Phuoc; Arean, Patricia; Hinton, Ladson

    2015-01-01

    The goal of this qualitative study was to describe the beliefs and experiences of Vietnamese caregivers caring for a family member with dementia and to elicit their ideas about promising interventions. We recruited 10 caregivers from support groups, the Alzheimer’s Association, and local community-based organizations in Northern California. We conducted semi-structured in-depth interviews with all caregivers, as well as a focus group to obtain ideas about supportive strategies. Several themes emerged from the data: (1) Filial piety was influential in caregiving; (2) A sense of loss/grief or trauma was pervasive; and (3) Caregivers had clear sources of stress and sources of support. An overarching theme underlying these three topics was that cultural beliefs, values, and expectations impacted the caregiving experience. Suggestions for promising interventions included education, language-congruent and/or telephone support groups, case management, inclusion of the care recipient in the intervention, and importance of credibility of the intervention. It also may be valuable to include an understanding of cultural values and promotion of spirituality and religion as key components. Findings highlight targets for dementia caregiver interventions to reduce burden and distress in an understudied population. PMID:26617956

  3. Preliminary study of themes of meaning and psychosocial service use among informal cancer caregivers

    PubMed Central

    APPLEBAUM, ALLISON J.; FARRAN, CAROL J.; MARZILIANO, ALLISON M.; PASTERNAK, ANNA R.; BREITBART, WILLIAM

    2016-01-01

    Objective The burden experienced by informal caregivers (ICs) of patients with advanced cancer is well documented. ICs are at risk for anxiety and depression, as well as existential concerns that arise when a loved one is facing a terminal illness. Few psychosocial interventions focus on existential concerns of ICs. However, a growing body of literature indicates that finding meaning in the experience of being an IC for a person with cancer has the potential to buffer against burden. The purpose of this study was to collect preliminary descriptive data regarding caregiver burden, meaning, and psychosocial service use to inform the adaptation of a meaning-centered intervention for ICs. Method Twenty-five caregivers and 32 patients completed brief, anonymous questionnaires that asked about their role as a caregiver or their perception of their loved one as a caregiver, caregiver burden, and psychosocial service use. Results Caregivers and patients identified anxiety and depression as top correlates of burden experienced by caregivers, whereas guilt, issues with role/sense of identity, and self-care were additional areas of concern. The majority of caregivers were not receiving psychosocial services, although they almost unanimously reported desiring services. A greater proportion of patients than caregivers believed that an intervention designed to enhance meaning would ameliorate burden, but, nevertheless, close to three quarters of caregivers reported interest in participating in such an intervention. Significance of results These study findings provide further support for, at a minimum, engaging ICs of persons with advanced cancer in interventions that address existential issues, mental health, self-care, and service use. Such interventions are likely to improve the quality of life of both patients with cancer and their ICs. PMID:23919966

  4. Family-based therapy for dementia caregivers: clinical observations

    PubMed Central

    MITRANI, V. B.; CZAJA, S. J.

    2008-01-01

    Family caregiving for dementia patients is a major social and clinical problem. Family caregivers face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected increase in the number of people with dementia, there is a need to identify approaches that will help families manage the challenges of caregiving. Social support from friends and family members has consistently been found to mediate caregiver outcomes, yet many caregivers face problems with isolation and estrangement from family members. In this regard, family-based therapy is a promising intervention for increasing social support for caregivers, and enhancing their quality of life and ability to provide care.This paper will discuss how family-based therapy can be applied as an intervention for family caregivers of dementia patients.The clinical implications of specific interactional patterns will be presented via case examples from an ongoing clinical trial with white American and Cuban American caregivers of dementia patients.The intent is to demonstrate how identification of interactional patterns is a valuable tool for implementing family-based interventions. PMID:18548132

  5. Gender differences in caregiving among family - caregivers of people with mental illnesses

    PubMed Central

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-01-01

    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

  6. Lewy body dementia: the impact on patients and caregivers.

    PubMed

    Zweig, Yael R; Galvin, James E

    2014-01-01

    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.

  7. Differences in COPD Patient Care by Primary Family Caregivers: An Age-Based Study

    PubMed Central

    Hsiao, Peng-Ching; Chu, Chi-Ming; Sung, Pei-Yi; Perng, Wann-Cherng; Wang, Kwua-Yun

    2014-01-01

    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

  8. An Integrated Review of Interventions to Improve Psychological Outcomes In Caregivers of Patients with Heart Failure

    PubMed Central

    Evangelista, Lorraine S.; Strömberg, Anna; Dionne-Odom, J. Nicholas

    2016-01-01

    Purpose of the Review To examine interventions aimed at improving psychological outcomes (e.g., caregiver burden, quality of life, anxiety, depression, perceived control, stress mastery, caregiver confidence and preparedness, and caregiver mastery) in family caregivers of patients with heart failure (HF). Recent Findings Eight studies meeting the inclusion criteria were included in the review. The most common intervention involved psychoeducation facilitated by a nurse (6/8) and supplemented with a combination of follow-up face-to-face sessions (2/6), home visits (2/6), telephone calls (3/6), and telemonitoring (3/6). Two studies used a support group intervention of 4–6 sessions. Half of the interventions reported a significant effect on one or more primary outcomes, including caregiver burden (n=4), depressive symptoms (n=1), stress mastery (n=1), caregiver confidence and preparedness (n=1), and caregiver mastery (n=1). Summary Compared to dementia and cancer family caregiving, few interventions have been evaluated in caregivers of patients with HF. Of the existing interventions identified in this review, considerable variability was observed in aims, intervention content, delivery methods, duration, intensity, methodological rigor, outcomes, and effects. Given this current state of the science, direct comparison of HF caregiver interventions and recommendations for clinical practice are premature. Thus, research priority is strongly warranted for intervention development and testing to enhance HF caregiver support and education. PMID:26716392

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

    PubMed

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

    2014-03-01

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

  10. [Night of the Alzheimer's patient: the nightmare of the caregiver via the caregivers'guides].

    PubMed

    Ostrowski, Madeleine; Mietkiewicz, Marie-Claude

    2015-06-01

    Care for Alzheimers' patients is quite a burden on the caregivers. Guides have been devoted to improve their knowledge about the disease and to help to provide the best care for the patient. A recent study on the reluctance of caregivers'spouses to seek external help, shows that none of 31 spouses had read a caregiver's guide. The aim of this study was to assess if caregiver's guides would help caregivers to deal with sleep/wake disorders. Amongst the 46 French guides, published between 1988 and 2013, thirty three raised the subject of the night sleep with more or less details. In these guides sleep disturbances are considered either as a symptom to be monitored or a natural aging process to be supported. We made a survey of the content of the caregiver's guides, of their goals and why they have been designed to. Then we analyze how the night sleep issue is dealt with in the guides, and eventually we consider the place to be granted to the patient in the management of his/her sleep disturbances.

  11. Effect of Support Group Intervention Applied to the Caregivers of Individuals With Heart Failure on Caregiver Outcomes.

    PubMed

    Barutcu, Canan Demir; Mert, Hatice

    2016-01-01

    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.

  12. [Family Caregivers as a Target Group for Health Promotion and Prevention].

    PubMed

    Budnick, A; Dräger, D; Blüher, S; Kummer, K

    2015-09-01

    Family caregivers are a target group for health promotion, due to the various burdens. Against this background an assessment (ARR) was developed, implemented, and validated in the project "Health Promotion for Elderly Family Caregiver". On the basis of the ARR, family caregivers received an individual, need-oriented, and specific offer for health promotion. In order to reach the target group optimally, a national health insurance company was used.

  13. Eating disorders: predictors of change in the quality of life of caregivers.

    PubMed

    Las Hayas, Carlota; Padierna, Jesús Ángel; Bilbao, Amaia; Martín, Josune; Muñoz, Pedro; Quintana, Jose María

    2014-03-30

    Eating disorders (EDs) have a strong impact on the quality of life (QoL) of caregivers. This study explores the longitudinal changes in the QoL of ED caregivers at 1 (T1; n=109) and 2 years (T2; n=32) follow-up, and identifies predictors of improvement at 1-year follow-up. ED outpatients also completed a battery of tests at T1 (n=69) and T2 (n=11). Multivariate hierarchical linear mixed models were used, in which the caregivers' 1-year changes in QoL, anxiety and depression scores were analysed as the dependent variables. Predictor variables were the caregivers' perception of burden, perception of the severity of the patient's ED, kinship data, and the ED person's scores on QoL, anxiety depression and ED symptoms. Higher scores in mental health and low perception of burden at baseline predicted improved caregiver QoL at 1-year follow-up. The caregivers' QoL improved if the perception of burden decreased over time and if depression of the patient improved. The results suggest that interventions directed to reduce the caregivers' perception of burden and to improve the mental health of the ED patients would lead to improved caregiver QoL. The high attrition rate at T2 made prediction analyses unviable.

  14. Caregivers' resilience is independent from the clinical symptoms of dementia.

    PubMed

    Dias, Rachel; Simões-Neto, José Pedro; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Baptista, Maria Alice Tourinho; Lacerda, Isabel Barbeito; Kimura, Nathalia Ramos Santos; Dourado, Marcia Cristina Nascimento

    2016-12-01

    Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p < 0.01) and inversely associated with their depressive symptoms (p < 0.01). There was no relationship between caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

  15. Caregiver- and Patient-Directed Interventions for Dementia

    PubMed Central

    2008-01-01

    other chronic diseases. The increased burden of caregiving contributes to a host of chronic health problems seen among many informal caregivers of persons with dementia. Much of this burden results from managing the behavioural and psychological symptoms of dementia (BPSD), which have been established as a predictor of institutionalization for elderly patients with dementia. It is recognized that for some patients with dementia, an LTC facility can provide the most appropriate care; however, many patients move into LTC unnecessarily. For individuals with dementia to remain in the community longer, caregivers require many types of formal and informal support services to alleviate the stress of caregiving. These include both respite care and psychosocial interventions. Psychosocial interventions encompass a broad range of interventions such as psychoeducational interventions, counseling, supportive therapy, and behavioural interventions. Assuming that 50% of persons with dementia live in the community, a conservative estimate of the number of informal caregivers in Ontario is 82,500. Accounting for the fact that 29% of people with dementia live alone, this leaves a remaining estimate of 58,575 Ontarians providing care for a person with dementia with whom they reside. Description of Interventions The 2 main categories of caregiver-directed interventions examined in this review are respite care and psychosocial interventions. Respite care is defined as a break or relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Depending on a caregiver’s needs, respite services will vary in delivery and duration. Respite care is carried out by a variety of individuals, including paid staff, volunteers, family, or friends. Psychosocial interventions encompass a broad range of interventions and have been classified in various ways in the literature. This review will examine educational, behavioural

  16. Sleep disturbances in caregivers of persons with dementia: Contributing factors and treatment implications

    PubMed Central

    McCurry, Susan M.; Logsdon, Rebecca G.; Teri, Linda; Vitiello, Michael V.

    2007-01-01

    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

  17. Prevalence and predictors of change in adult-child primary caregivers.

    PubMed

    Szinovacz, Maximiliane E; Davey, Adam

    2013-01-01

    Family caregiving research is increasingly contextual and dynamic, but few studies have examined prevalence and predictors of change in primary caregivers, those with the most frequent contact with healthcare professionals. We identified prevalence and predictors of 2-year change in primary adult-child caregivers. Data pooled from the 1992-2000 waves of the Health and Retirement Study (HRS) represent 1,068 parent-level care occasions and 3,616 child-level occasions. There is considerable 2-year stability in primary adult-child caregivers. Parents are more prone to experience a change in adult-child primary caregivers if they live by themselves and if they have more sons and daughters. As far as the adult children are concerned, daughters and children living closer to parents are more likely to remain primary caregivers. Results suggest that change in primary caregivers is more strongly associated with available alternatives and gender norms than burden and competing obligations.

  18. Accessible support for family caregivers of seniors with chronic conditions: from isolation to inclusion.

    PubMed

    Stewart, Miriam; Barnfather, Alison; Neufeld, Anne; Warren, Sharon; Letourneau, Nicole; Liu, Lili

    2006-01-01

    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.

  19. Understanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United States.

    PubMed

    DeKoven, M; Karkare, S; Kelley, L A; Cooper, D L; Pham, H; Powers, J; Lee, W C; Wisniewski, T

    2014-07-01

    Congenital haemophilia is an inherited bleeding disorder typically diagnosed at birth or shortly thereafter. Haemophilia imposes a significant burden on patients and their caregivers. The aim of the study was to quantify the overall burden of haemophilia on caregivers in the USA using a novel disease-specific questionnaire and the previously validated CarerQol. Targeted literature review and a previous survey conducted by the authors was used to develop an online questionnaire with six burden domains of interest to caregivers (emotional stress, financial, sacrifice, medical management, child's pain and transportation) and several visual analogue scales (VAS). Content validity of the questionnaire was confirmed by three haemophilia caregivers. The study sample consisted of caregivers of children with haemophilia identified via a previously developed opt-in research database. Descriptive statistics were employed for demographic and clinical characteristics; a generalized linear model (GLM) was used to identify factors influencing caregiver burden. A total of 310 caregivers completed the survey (45.5% response rate). Most of the participating caregivers were mothers of a child with haemophilia (88%), between 35 and 44 years of age (48%), and with a college education or a postgraduate degree (63%). 'Child's pain' was identified as the most burdensome domain to caregivers (median score = 3.50 out of 5), followed by 'emotional stress' (2.67), 'financial' (2.40), 'transportation' (2.33), 'sacrifice' (2.17) and 'medical management' (2.00) domains. Although higher income exhibited a protective effect, episodes of bleeds, current presence of an inhibitor and lower caregiver productivity in the past month negatively affected caregiver burden per GLM results. Training and educational programs should potentially be developed to address caregiver burden.

  20. Concordance of Race or Ethnicity of Interventionists and Caregivers of Dementia Patients: Relationship to Attrition and Treatment Outcomes in the REACH Study

    ERIC Educational Resources Information Center

    McGinnis, Kathleen A.; Schulz, Richard; Stone, Roslyn A.; Klinger, Julie; Mercurio, Rocco

    2006-01-01

    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…

  1. Long Distance Caregiving

    MedlinePlus

    ... life, working women with their own major family responsibilities remain our primary caregivers, more and more men are becoming caregivers. However, anyone anywhere can give care—regardless of gender, income, age, social status, and employment. No matter how great the ...

  2. Stress associated with caregiving: an examination of the stress process model among Kenyan Luo elders.

    PubMed

    Ice, Gillian H; Sadruddin, Aalyia F A; Vagedes, Amy; Yogo, Jaja; Juma, Elizabeth

    2012-06-01

    Globally, a growing number of grandparents are caring for their grandchildren. The impact and burden associated with increases in custodial grandparenting, however, may differ by culture. In the United States, the caregiving role has been shown to be a significant source of stress for older adults. In cultures in which grandparents are more commonly involved in the care of young children, however, increasing caregiving roles may not be viewed as stressful. This study examines the impact of caregiving on perceived and physiological measures of stress among 640 Luo elders (60+) in western Kenya, where high HIV prevalence among younger-to-middle aged adults has led to a heavy burden of orphan care. Perceived stress levels were measured using the Luo Perceived Stress Scale (LPSS). Salivary cortisol and casual blood pressure were used as biomarkers of stress. Results were analyzed using random mixed effects models. Overall this study showed that caregivers have higher levels of perceived stress than non-caregivers. For women, household composition, including the number of orphans and adults in the homestead impacted perceived stress. Among men, those who perceived caregiving as burdensome had higher perceived stress. Despite the association between caregiving and perceived stress, there was a minimal relationship between caregiving and the two biomarkers of stress. This may be because caregiving is superimposed onto other stressors and therefore has a minimal physiological impact. These results highlight the importance of local context in determining the impact of the caregiving role on older adult well-being.

  3. A Randomized Trial of a CAM Therapy for Stress Reduction in American Indian and Alaskan Native Family Caregivers

    ERIC Educational Resources Information Center

    Korn, Leslie; Logsdon, Rebecca G.; Polissar, Nayak L.; Gomez-Beloz, Alfredo; Waters, Tiffany; Ryser, Rudolph

    2009-01-01

    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…

  4. Differences in caregivers' cognitive appraisal, coping strategies, and perceived influence on life by care recipients' sex and kinship with primary caregivers.

    PubMed

    Iwata, Noboru; Horiguchi, Kazuko

    2016-01-01

    caregivers' perceptions of negative and positive influences on family life. Regarding the main effects of caregivers' kinship, spousal caregivers felt more anxious about continuous caregiving but felt more "fulfilled" and "positively accepted" in their caregiving role.Conclusion Cognitive appraisal and coping strategies toward family caregiving, and the caregivers' perceptions of negative and positive influences on life might vary according to care recipients' sex and caregivers' kinship. Our findings suggest the necessity for long-term care insurance services to incorporate not only care for the care recipients but also a strategy to deal with the psychological burden of family caregivers.

  5. Burden of childhood-onset arthritis

    PubMed Central

    2010-01-01

    Juvenile arthritis comprises a variety of chronic inflammatory diseases causing erosive arthritis in children, often progressing to disability. These children experience functional impairment due to joint and back pain, heel pain, swelling of joints and morning stiffness, contractures, pain, and anterior uveitis leading to blindness. As children who have juvenile arthritis reach adulthood, they face possible continuing disease activity, medication-associated morbidity, and life-long disability and risk for emotional and social dysfunction. In this article we will review the burden of juvenile arthritis for the patient and society and focus on the following areas: patient disability; visual outcome; other medical complications; physical activity; impact on HRQOL; emotional impact; pain and coping; ambulatory visits, hospitalizations and mortality; economic impact; burden on caregivers; transition issues; educational occupational outcomes, and sexuality. The extent of impact on the various aspects of the patients', families' and society's functioning is clear from the existing literature. Juvenile arthritis imposes a significant burden on different spheres of the patients', caregivers' and family's life. In addition, it imposes a societal burden of significant health care costs and utilization. Juvenile arthritis affects health-related quality of life, physical function and visual outcome of children and impacts functioning in school and home. Effective, well-designed and appropriately tailored interventions are required to improve transitioning to adult care, encourage future vocation/occupation, enhance school function and minimize burden on costs. PMID:20615240

  6. The Contribution of a “Supportive Community” Program for Older Persons in Israel to Their Offspring Who Are Primary Caregivers

    PubMed Central

    Even-Zohar, Ahuva

    2015-01-01

    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

  7. Family Caregiving or Caregiving Alone: Who Helps the Helper?

    ERIC Educational Resources Information Center

    Sims-Gould, Joanie; Martin-Matthews, Anne

    2007-01-01

    This study advances the understanding of family caregiving by examining the relationship between adult children caregivers and their helpers. Specifically, it focuses on examining "who helps whom" and extends analyses beyond the dyadic focus of caregiving in later life. The focus on helping and caregiving addresses the variety of…

  8. Empowering Family Caregivers: The Powerful Tools for Caregiving Program

    ERIC Educational Resources Information Center

    Boise, Linda; Congleton, Leslie; Shannon, Kathy

    2005-01-01

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

  9. The Needs of Others: Gender and Sleep Interruptions for Caregivers

    ERIC Educational Resources Information Center

    Burgard, Sarah A.

    2011-01-01

    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.…

  10. A Telephone Intervention for Dementia Caregivers: Background, Design, and Baseline Characteristics

    PubMed Central

    Tremont, Geoffrey; Davis, Jennifer; Papandonatos, George D.; Grover, Christine; Ott, Brian R.; Fortinsky, Richard H.; Gozalo, Pedro; Bishop, Duane S.

    2013-01-01

    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

  11. American Indian Family Caregivers' Experiences with Helping Elders

    PubMed Central

    Jervis, Lori L.; Boland, Mathew E.; Fickenscher, Alexandra

    2011-01-01

    Abstract 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

  12. Caregiving appraisal and interventions based on the progressively lowered stress threshold model.

    PubMed

    Stolley, Jacqueline M; Reed, David; Buckwalter, K C

    2002-01-01

    The purpose of this article is to describe the impact of a theoretically driven, psychoeducational intervention based on the Progressively Lowered Stress Threshold (PLST) model on caregiving appraisal among community-based caregivers of persons with Alzheimer's disease and related disorders. A total of 241 subjects completed the year-long study in four sites in Iowa, Minnesota, Indiana, and Arizona. Caregiving appraisal was measured using the four factors of the Philadelphia Geriatric Center Caregiving Appraisal Scale: mastery, burden, satisfaction, and impact. Analysis of trends over time showed that the intervention positively affected impact, burden, and satisfaction but had no effect on mastery when measured against the comparison group. The PLST model was influential in increasing positive appraisal and decreasing negative appraisal of the caregiving situation.

  13. Wife Caregivers of Frail Elderly Veterans: Correlates of Caregiver Satisfaction and Caregiver Strain.

    ERIC Educational Resources Information Center

    Dorfman, Lorraine T.; And Others

    1996-01-01

    Investigated correlates of satisfaction and strain in 80 wife caregivers of frail elderly veterans. Support from spouse was the strongest positive predictor of satisfaction with caregiving and the strongest negative predictor of caregiver strain. Self efficacy was the strongest predictor of caregiver life satisfaction. (Author)

  14. The Caregiving Quandary
.

    PubMed

    Boyle, Deborah A

    2017-04-01

    Long before I became a cancer caregiver, I worried about families. Providing care without a script, expanding their workload, solo decision making, incessant worrying, managing expectations, overseeing medications-that is the lay caregiver's all-consuming world. However, when cancer entered my residence, I started living what I had historically observed from a distance. The double-duty caregiving at work and home overwhelmed me. Years of experience did little to prepare me for the emotional tsunami and physical toll caregiving took on me. I questioned my ability to make decisions, I got my husband's medications mixed up, and I had trouble asking for and accepting help, despite how much I needed it.
.

  15. Eldercare at Home: Caregiving

    MedlinePlus

    ... as a way of showing appreciation for the love and care they have received themselves. Caregiving can ... give. You might also forget that other people love and care about you and are willing to ...

  16. Caregivers and Serious Illness

    MedlinePlus

    ... or those we choose to call family. Caregiver Responsibilities When a family member has a serious illness , ... transportation; do housework; handle your loved one’s former responsibilities, such as child care; and provide help with ...

  17. Depression and Caregiving

    MedlinePlus

    ... FCA - A A + A You are here Home Depression and Caregiving Order this publication Printer-friendly version ... a more serious depression over time. Symptoms of Depression People experience depression in different ways. Some may ...

  18. Guide for Caregivers

    MedlinePlus

    ... Caregivers to the satisfaction they have in their personal and social relationships, and the amount of time ... reduced for carepartners who are able to develop personal and social support. Anger The situation feels — and ...

  19. Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C): Rationale and Overview

    PubMed Central

    APPLEBAUM, ALLISON J.; KULIKOWSKI, JULIA R.; BREITBART, WILLIAM

    2016-01-01

    Objective The multidimensional burden that results from providing care to a patient with cancer is well documented and a growing number of psychosocial interventions have been developed to address this burden. None, however, target existential distress, a critical, common element — and potentially driving mechanism — of caregiver burden. Meaning-Centered Psychotherapy (MCP) is a structured psychotherapeutic intervention originally developed by our group to target existential distress and spiritual well-being among patients with advanced cancer. We are currently developing Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C). The objective of this qualitative study is to describe the application of MCP to the unique experience of caregivers of patients with advanced cancer. Methods A case study of a participant from an initial MCP-C group is presented, with a focus on the application of sources of meaning to the cancer caregiving experience. Results The exploration of critical sources of meaning in the participant’s life generally, and related to caregiving specifically, highlighted significant areas of growth, including an increased understanding of the historical context shaping her experience of providing care, the recognition of the need for improved self-care and reconnecting with meaningful activities, and the possibility for continued connectedness to others and the world, despite the limitations resulting from her husband’s terminal illness. Significance of results Existential distress is a critical and often overlooked element of burden among cancer caregivers. MCP-C is intended to target this component of burden and address this critical gap in the palliative care literature. Clinical trials are underway to evaluate the efficacy of MCP-C delivered over the Internet. Future studies are needed to evaluate the benefits of MCP-C for particularly burdened groups of caregivers, such as caregivers of patients with brain tumors and those undergoing

  20. Burden of neurological conditions in Canada.

    PubMed

    Gaskin, J; Gomes, J; Darshan, S; Krewski, D

    2016-05-03

    Neurological conditions are among the leading causes of disability in the Canadian population and are associated with a large public health burden. An increase in life expectancy and a declining birth rate has resulted in an aging Canadian population, and the proportion of age-adjusted mortality due to non-communicable diseases has been steadily increasing. These conditions are frequently associated with chronic disability and an increasing burden of care for patients, their families and caregivers. The National Population Health Study of Neurological Conditions (NPHSNC) aims to improve knowledge about neurological conditions and their impacts on individuals, their families, caregivers and health care system. The Systematic Review of Determinants of Neurological Conditions, a specific objective within the NPHSNC, is a compendium of systematic reviews on risk factors affecting onset and progression of the following 14 priority neurological conditions: Alzheimer's disease (AD), amyotrophic lateral sclerosis (ALS), brain tumours (BT), cerebral palsy (CP), dystonia, epilepsy, Huntington's disease (HD), hydrocephalus, multiple sclerosis (MS), muscular dystrophies (MD), neurotrauma, Parkinson's disease (PD), spina bifida (SB), and Tourette's syndrome (TS). The burden of neurological disease is expected to increase as the population ages, and this trend is presented in greater detail for Alzheimer's and Parkinson's disease because the incidence of these two common neurological diseases increases significantly with age over 65 years. This article provides an overview of burden of neurological diseases in Canada to set the stage for the in-depth systematic reviews of the 14 priority neurological conditions presented in subsequent articles in this issue.

  1. Quality of life of primary caregivers of spinal cord injury survivors.

    PubMed

    Graça, Ágatha; Nascimento, Matheus Amarante do; Lavado, Edson Lopes; Garanhani, Márcia Regina

    2013-01-01

    The aim of this study was to analyze quality of life of caregivers who are relatives of patients with spine cord injury (SCI). Fourteen women (seven caregivers and seven controls) were evaluated by the Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36) and the Caregiver Burden Scale (CBS) Questionnaires. The data from both questionnaires were compared using the Mann-Whitney U testing procedure for differences between caregivers and controls (p<0.05). The results from SF-36 were not statistically significant between groups, however, for the CBS data, there were significant differences between groups (p>0.05), characterized by the percentage difference of 62%, 66.7%, 55%, 50%, 57% and 63% for tension, isolation, disappointment, emotional involvement, environment and overall score, respectively. The CBS questionnaire was more adequate for verifying quality of life of caregivers of SCI patients, and caregiving may have a negative impact on their quality of life.

  2. Clinical effectiveness of a skills training intervention for caregivers in improving patient and caregiver health following in-patient treatment for severe anorexia nervosa: pragmatic randomised controlled trial

    PubMed Central

    Hibbs, Rebecca; Magill, Nicholas; Goddard, Elizabeth; Rhind, Charlotte; Raenker, Simone; Macdonald, Pamela; Todd, Gill; Arcelus, Jon; Morgan, John; Beecham, Jennifer; Schmidt, Ulrike; Landau, Sabine

    2015-01-01

    Background Families express a need for information to support people with severe anorexia nervosa. Aims To examine the impact of the addition of a skills training intervention for caregivers (Experienced Caregivers Helping Others, ECHO) to standard care. Method Patients over the age of 12 (mean age 26 years, duration 72 months illness) with a primary diagnosis of anorexia nervosa and their caregivers were recruited from 15 in-patient services in the UK. Families were randomised to ECHO (a book, DVDs and five coaching sessions per caregiver) or treatment as usual. Patient (n=178) and caregiver (n=268) outcomes were measured at discharge and 6 and 12 months after discharge. Results Patients with caregivers in the ECHO group had reduced eating disorder psychopathology (EDE-Q) and improved quality of life (WHO-Quol; both effects small) and reduced in-patient bed days (7–12 months post-discharge). Caregivers in the ECHO group had reduced burden (Eating Disorder Symptom Impact Scale, EDSIS), expressed emotion (Family Questionnaire, FQ) and time spent caregiving at 6 months but these effects were diminished at 12 months. Conclusions Small but sustained improvements in symptoms and bed use are seen in the intervention group. Moreover, caregivers were less burdened and spent less time providing care. Caregivers had most benefit at 6 months suggesting that booster sessions, perhaps jointly with the patients, may be needed to maintain the effect. Sharing skills and information with caregivers may be an effective way to improve outcomes. This randomised controlled trial (RCT) was registered with Current Controlled Trials ISRCTN06149665. Declaration of interest J.T. is a co-author of the book used in the ECHO intervention and receives royalties. Copyright and usage © The Royal College of Psychiatrists 2015. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) licence. PMID:27703724

  3. Parenting Stress Among Caregivers of Children With Bipolar Spectrum Disorders.

    PubMed

    Perez Algorta, Guillermo; MacPherson, Heather A; Youngstrom, Eric A; Belt, Caroline C; Arnold, L Eugene; Frazier, Thomas W; Taylor, H Gerry; Birmaher, Boris; Horwitz, Sarah McCue; Findling, Robert L; Fristad, Mary A

    2017-02-26

    Caregivers of psychiatrically impaired children experience considerable parenting stress. However, no research has evaluated parenting stress within the context of pediatric bipolar spectrum disorders (BPSD). Thus, the aim of this investigation was to identify predictors and moderators of stress among caregivers in the Longitudinal Assessment of Manic Symptoms study. Participants included 640 children and their caregivers in the Longitudinal Assessment of Manic Symptoms cohort. Children had a mean age of 9.4 ± 1.9 years (68% male, 23% BPSD); parents had a mean age of 36.5 ± 8.3 years (84% mothers). Children with BPSD had more service utilization, psychiatric diagnoses, mood and anxiety symptoms, and functional impairment but fewer disruptive behavior disorders. Caregivers of children with BPSD were more likely than caregivers of children without BPSD to have a partner, elevated depressive symptoms, antisocial tendencies, and parenting stress (Cohen's d = .49). For the whole sample, higher child IQ, mania, anxiety, disruptive behavior, and caregiver depression predicted increased parenting stress; maternal conduct disorder predicted lower stress. Child anxiety and disruptive behavior were associated with elevated caregiver stress only for non-BPSD children. Caregivers of children with BPSD experience significant burden and thus require specialized, family-focused interventions. As stress was also elevated, to a lesser degree, among depressed caregivers of children with higher IQ, mania, anxiety, and disruptive behavior, these families may need additional supports as well. Although parents with conduct/antisocial problems evidenced lower stress, these difficulties should be monitored. Thus, parenting stress should be evaluated and addressed in the treatment of childhood mental health problems, especially BPSD.

  4. Descriptive analyses of caregiver reprimands.

    PubMed

    Sloman, Kimberly N; Vollmer, Timothy R; Cotnoir, Nicole M; Borrero, Carrie S W; Borrero, John C; Samaha, Andrew L; St Peter, Claire C

    2005-01-01

    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.

  5. Effect of a Caregiver's Education Program on Stroke Rehabilitation

    PubMed Central

    2017-01-01

    Objective To evaluate effects of caregiver's education program on their satisfaction, as well as patient functional recovery, performed in addition to daily conventional rehabilitation treatment. Methods Three hundred eleven subjects diagnosed with first-onset stroke and transferred to the Department of Physical Medicine and Rehabilitation of Inha University Hospital were surveyed. In 2015, caregivers attended an education program for acute and subacute stroke patients. Patients who received an additional rehabilitation therapy were assigned to the experimental group (n=81), whereas the control group (n=100) consisted of transfer cases in 2014 with only conventional treatment. The experimental group was classified by severity using the Korean version of the National Institutes of Health Stroke Scale (K-NIHSS), which was administered to all 181 subjects, in addition to, the Korean version of the Mini Mental Status Examination (K-MMSE), a Modified Barthel Index (K-MBI), and the Berg Balance Scale (K-BBS). Caregiver satisfaction and burden before and after education programs were assessed using the Canadian Occupational Performance Measure (COPM), as well as family burden and caregiver burnout scales. Results No significant intergroup difference was observed between initial K-NIHSS, K-MMSE, K-BBS, K-MBI scores, and times from admission to transfer. Those with moderate or severe strokes under the experimental condition showed a more significant improvement than the control group as determined by the K-NIHSS and K-BBS, as well as tendential K-MMSE and K-MBI score increases. Satisfaction was significantly greater for family members and formal caregivers of patients with strokes of moderate severity in the experimental group. Conclusion The caregiver's education program for stroke subjects had a positive outcome on patients' functional improvement and caregiver satisfaction. The authors believe that the additional rehabilitation therapy with the education program aids

  6. The Zarit Burden Interview in Portugal: Validity and recommendations in dementia and palliative care.

    PubMed

    Gonçalves-Pereira, Manuel; Zarit, Steven H

    2014-01-01

    The impact of dementia on informal or family caregivers became a public health issue. One well-established tool for the assessment of emotional, physical and social impact on caregivers is the Zarit Burden Interview. Worldwide, it is widely used in epidemiological studies, drug or psychosocial clinical trials, and health services research. The original focus on burden among dementia caregivers has spread to other clinical contexts, mostly in old age and palliative care. Given these diverse applications, issues around the validity and reliability of national translations are crucial to assure that all evidence gathered is indeed of high quality. Moreover, caution is needed on the use of cut-offs for categorizing levels of caregiver strain or of subscales derived from recurrent exploratory factor analyses in small-scale local studies. As with other translations of measures in the health field, researchers and clinicians in Portugal must be aware of how to address bias in using the Zarit Burden Interview and interpreting findings.

  7. A Web-Based Psychosocial Intervention for Family Caregivers of Older People: Results from a Mixed-Methods Study in Three European Countries

    PubMed Central

    Poli, Arianna; Andréasson, Frida; Salzmann, Benjamin; Papa, Roberta; Hanson, Elizabeth; Efthymiou, Areti; Döhner, Hanneli; Lancioni, Cristina; Civerchia, Patrizia; Lamura, Giovanni

    2016-01-01

    Background Informal caregiving is the main source of care for older people in Europe. An enormous amount of responsibility and care activity is on the shoulders of family caregivers, who might experience problems in their psychological well-being and in reconciling caregiving and their personal sphere. In order to alleviate such burden, there is increasing interest and growing research in Europe on Web-based support addressing family caregivers and their needs. However, the level of development and penetration of innovative Web-based services for caregivers is still quite low and the access to traditional face-to-face services can be problematic for logistic, availability, and quality reasons. Objective As part of the European project INNOVAGE, a pilot study was conducted for developing and testing a Web-based psychosocial intervention aimed at empowering family caregivers of older people in Italy, Sweden, and Germany. The program offered information resources and interactive services to enable both professional and peer support. Methods A mixed-methods, sequential explanatory design was adopted. Caregivers’ psychological well-being, perceived negative and positive aspects of caregiving, and social support received were assessed before and after the 3-month intervention. Poststudy, a subsample of users participated in focus groups to assist in the interpretation of the quantitative results. Results A total of 94 out of 118 family caregivers (79.7%) from the three countries used the Web platform at least once. The information resources were used to different extents in each country, with Italian users having the lowest median number of visits (5, interquartile range [IQR] 2-8), whereas German users had the highest number (17, IQR 7-66) (P<.001). The interactive services most frequently accessed (more than 12 times) in all countries were the social network (29/73, 40%) and private messages (27/73, 37%). The pretest-posttest analysis revealed some changes

  8. Religious coping and caregiver well-being in Mexican-American families

    PubMed Central

    Lee, Jerry W.; Nanyonjo, Rebecca D.; Laufman, Larry E.; Torres-Vigil, Isabel

    2017-01-01

    Objective We sought to explore the association of religious and spiritual coping with multiple measures of well-being in Latinos caring for older relatives with long-term or permanent disability, either with or without dementia. Methods Using a multi-dimensional survey instrument, we conducted in-home interviews with 66 predominantly Mexican-American Catholic family caregivers near the US–Mexico border. We assessed caregivers' intrinsic, organizational and non-organizational religiosity with the Duke Religiosity Index, as well as Pargament's brief positive and negative spiritual coping scale to determine the association of religiosity with caregivers' mental and physical health, depressive symptomatology and perceived burden. Results Using regression analysis, we controlled for sociocultural factors (e.g. familism, acculturation), other forms of formal and informal support, care recipients' functional status and characteristics of the caregiving dyad. Intrinsic and organizational religiosity was associated with lower perceived burden, while non-organizational religiosity was associated with poorer mental health. Negative religious coping (e.g. feelings that the caregiver burden is a punishment) predicted greater depression. Conclusion Measures of well-being should be evaluated in relation to specific styles of religious and spiritual coping, given our range of findings. Further investigation is warranted regarding how knowledge of the positive and negative associations between religiosity and caregiving may assist healthcare providers in supporting Latino caregivers. PMID:19197693

  9. R. I. Caregivers. Caring: A Training Program for Family Caregivers.

    ERIC Educational Resources Information Center

    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…

  10. Family Caregiving. A Manual for Caregivers of Older Adults.

    ERIC Educational Resources Information Center

    Mehrotra, Chandra, Ed.; And Others

    This manual provides caregivers with practical knowledge and suggestions that could be of help to them in this important role. Chapter 1 gives an overview of the volume and tells how to use it. Chapter 2 identifies who caregivers are, what they do, and what changes have taken place in their lives since they became caregivers. Chapter 3 begins with…

  11. Coping strategies, care manager support and mental health outcome among Japanese family caregivers.

    PubMed

    Yamada, Miho; Hagihara, Akihito; Nobutomo, Koichi

    2008-07-01

    Coping and social support are regarded as major modifiers of the caregiving stress and negative mental health effects experienced by caregivers. Under Japan's Long-term Care Insurance (LTCI) system, care managers have played a major role in providing psychosocial support for family caregivers while coordinating formal and informal care resources for elderly people. However, since the launch of the LTCI system in 2000, no evaluation has examined the role care managers play in buffering the negative effects of the caregiver burden among family caregivers in Japan. This study examined the direct and buffering effects of stress-coping strategies and care manager support on caregiver burden and depression among Japanese family caregivers (n = 371) caring for community-dwelling persons aged 65 or over who were having difficulties with the activities of daily living. A self-administrated questionnaire survey was conducted between February and March 2005 in a rural suburb in south-western Japan. Hierarchical regression analyses revealed the following. (i) Coping strategies and 'social talk' by care managers had direct effects on caregiver burden and depression. (ii) 'Avoidant' coping and 'social talk' by care managers had buffering effects on the care needs-depression relationship. (iii) 'Information giving' by care managers had no significant direct effect, but it had a negative effect on the care needs-depression relationship. Overall, results concerning 'approaching' coping were in line with those of previous studies, while findings concerning 'avoidant' coping were not consistent with findings in Western countries. The type of care manager support appeared to have a variable influence on caregiver burden and depression.

  12. Informal Caregiving and Self-Reported Mental and Physical Health: Results From the Gazel Cohort Study

    PubMed Central

    Bonnaud, Sophie; Boumendil, Ariane; Andrieu, Sandrine; Bonenfant, Sébastien; Goldberg, Marcel; Zins, Marie; Ankri, Joël

    2011-01-01

    Objectives. We investigated whether, and under what conditions, informal caregiving is associated with improved self-reported physical and mental health, most notably in terms of cognitive functioning. Methods. We performed a cross-sectional analysis of 2008 data from the Gazel Cohort Study, which involved 10 687 men and women aged 54 to 70 years. Multivariate linear and logistic regression models were used to estimate the associations between self-reported health and caregiving status and burden. Results. Regular caregivers with the highest burden scores reported significantly worse health status than did noncaregivers for almost all of the physical and mental outcomes evaluated after adjustment for potential confounding factors. In particular, they reported more cognitive complaints (odds ratio [OR] = 1.44; 95% confidence interval [CI] = 1.21, 1.73). Conversely, caregivers with the lowest burden scores reported better perceived health status, less physical and mental tiredness, and fewer depressive symptoms (OR = 0.50; 95% CI = 0.37, 0.68) than did noncaregivers; however, they did not report decreases in cognitive difficulties (OR = 0.98; 95% CI = 0.81, 1.18). Conclusions. Our findings support the hypothesis that caregiving can have positive effects on health, provided that caregiving activities themselves are not too heavy a burden. PMID:21493948

  13. Examining the relationship between health-related quality of life in individuals with spinal cord injury and the mental health of their caregivers in Colombia, South America.

    PubMed

    Coleman, Jennifer A; Harper, Leia A; Perrin, Paul B; Olivera, Silvia L; Perdomo, Jose L; Arango, Jose A; Arango-Lasprilla, Juan C

    2013-12-01

    Although considerable research has been carried out on family caregivers of individuals with various types of disabilities, spinal cord injury (SCI) caregivers have received considerably less attention in terms of research, especially in regions such as Latin America. This study examined the relationship between health-related quality of life (HRQOL) in individuals with SCI and their family caregiver's mental health in Neiva, Colombia. Thirty-four individuals with SCI and their primary caregivers (34 dyads; n=68) from the Foundation for the Integral Development of People with Disabilities in Neiva, Colombia, were included in this study. Individuals with SCI completed eight subscales of the SF-36 that assessed HRQOL. Five aspects of caregiver mental health were assessed, including burden (Zarit Burden Interview), satisfaction with life (Satisfaction with Life Scale), depression (Patient Health Questionnaire-9), self-esteem (Rosenberg Self-Esteem Scale), and anxiety (State Trait Anxiety Inventory). A series of multiple regressions uncovered strong associations among the HRQOL of individuals with SCI and various aspects of caregiver mental health. In these regressions, patient physical functioning and pain were independently related to caregiver burden; patient pain and general health were independently related to caregiver satisfaction with life; and patient pain was independently related to caregiver anxiety. HRQOL in individuals with SCI was robustly related to their caregiver's mental health, suggesting that the two sets of variables are closely linked. These findings suggest that caregiver mental health should be a central part of SCI rehabilitation interventions, especially in Latin America.

  14. Health of Elderly Mexican American Adults and Family Caregiver Distress

    PubMed Central

    Rote, Sunshine; Angel, Jacqueline L.; Markides, Kyriakos

    2016-01-01

    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

  15. Naturalistic Enactment to Elicit and Recognize Caregiver State Anxiety.

    PubMed

    Miranda, Darien; Favela, Jesus; Ibarra, Catalina; Cruz, Netzahualcoyotl

    2016-09-01

    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.

  16. Recalled attributes of parents with Alzheimer's disease: relevance for caregiving

    PubMed Central

    Chiriboga, David A.; Jang, Yuri; Molinari, Victor; Kim, Giyeon; Ko, Jung Eun

    2014-01-01

    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

  17. Stress Relief for the Caregiver

    MedlinePlus

    ... 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 ...

  18. For Caregivers: Coping with Burnout

    MedlinePlus

    ... roles in our lives, such as wife/husband, mother/father, caregiver, and breadwinner. It is easy to ... From One Caregiver to Another Respite Care Resources Military Veterans Stories of Courage Newly Diagnosed We’re ...

  19. Caregiving for Frail Elders in Rural America.

    ERIC Educational Resources Information Center

    Bane, Share DeCroix

    This handbook attempts to answer questions about informal caregiving and caregivers, focusing on the rural elderly. The first section presents a national perspective on caregiving. Recipients of caregiving, providers of caregiving, the caregiving dilemma, and psychological, physical, family, and financial issues are discussed. The second section…

  20. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review 1

    PubMed Central

    Macedo, Eliza Cristina; da Silva, Leila Rangel; Paiva, Mirian Santos; Ramos, Maria Natália Pereira

    2015-01-01

    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

  1. Validation of the Italian Version of the Caregiver Abuse Screen among Family Caregivers of Older People with Alzheimer's Disease

    PubMed Central

    Di Rosa, Mirko; Barbabella, Francesco; Barbini, Norma; Chiatti, Carlos

    2017-01-01

    Introduction. Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives. To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer's disease (AD) and to identify risk factors for elder abuse in Italy. Methods. The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman's correlation coefficients, principal-component analysis, and Cronbach's alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results. The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach's alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions. The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD. PMID:28265571

  2. Caregiving: A Qualitative Concept Analysis

    ERIC Educational Resources Information Center

    Hermanns, Melinda; Mastel-Smith, Beth

    2012-01-01

    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…

  3. Predictors of Child Caregiver Commitment.

    ERIC Educational Resources Information Center

    Webb, Nancy Carnahan; Lowther, Malcolm

    This study examined the relationship between child caregiver commitment and the caregiver's personal characteristics and work experience, the characteristics of the job, and the quality of the child care center. Questionnaires that included several measurement instruments were sent to 381 full-time child caregivers in 94 centers. Caregiver…

  4. [Factors affecting subjective satisfaction with verbal communication among the disabled elderly and their family caregivers].

    PubMed

    Miura, Hiroko; Arai, Yumiko; Yamasaki, Kiyoko

    2005-05-01

    The aims of the present study were to investigate satisfaction with verbal communication among the disabled elderly and their family caregivers; and to find the significantly influential factors of satisfaction with verbal communication. The subjects were 85 disabled elderly and 85 family caregivers. For the disabled elderly, satisfaction with verbal communication, demographic, and physical factors were examined using an interview survey. For the caregivers, satisfaction with verbal communication, demographic factors, and some factors related caregiving were examined using a self-administered questionnaire. In the disabled elderly, 82.4% were satisfied with their verbal communication while 55.3% of family caregivers were satisfied. Satisfaction with verbal communication between the disabled elderly and their caregivers showed low agreement (kappa = 0.17). Bivariate analysis revealed that satisfaction with verbal communication of the disabled elderly was significantly related to ADL (p < 0.01), dysphagia risk (p < 0.05), and ability of comprehension (p < 0.05) while satisfaction with verbal communication of caregivers was significantly related to the gender of the disabled elderly and caregivers' burden. Furthermore, multiple regression analysis showed that the factor most related to satisfaction with verbal communication for the disabled elderly was ability of comprehension (p value = 0.032, odds ratio = 2.960), and the most related factor for their caregivers was the burden evaluated by J-ZBI_8 (p value = 0.004, odds ratio = 0.842). These results suggest that satisfaction with verbal communication of the disabled elderly disagrees with that of the family caregivers, and that some related factors for the disabled elderly are different from those in their family caregivers.

  5. Caregiver Action Network

    MedlinePlus

    ... back from Iraq, he depends on me.” “My wife has been diagnosed with MS.” We CAN help ... and I’m his primary caregiver.” “Since my wife’s stroke, I handle everything.” “It’s been 10 years ...

  6. MDA ALS Caregiver's Guide

    MedlinePlus

    ... caregiving is to get support through respite care. Call on your network of paid or volunteer helpers to stay with your loved one so you can get a hair cut, go to a ball game, shop, enjoy a hobby, or just sit in the park and watch birds. Ask for babysitting or for someone to take ...

  7. A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care.

    PubMed

    Whitmore, Rebecca; Crooks, Valorie A; Snyder, Jeremy

    2017-01-01

    Canadians travelling abroad for privately arranged surgeries paid for out-of-pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver-companions. Caregiver-companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or 'experiential resources' they draw upon to cope with providing care and avoiding caregiver burden. The care-giving literature has demonstrated that such burden can negatively impact caregivers' well-being. The unique, transnational context of care-giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver-companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi-structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel; (ii) previous experiences of informal care-giving; and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants' perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism

  8. The burden of Duchenne muscular dystrophy

    PubMed Central

    Landfeldt, Erik; Lindgren, Peter; Bell, Christopher F.; Schmitt, Claude; Guglieri, Michela; Straub, Volker; Lochmüller, Hanns

    2014-01-01

    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

  9. Geography and the Burden of Care in Pediatric Cancers

    PubMed Central

    Fluchel, Mark N.; Kirchhoff, Anne C.; Bodson, Julia; Sweeney, Carol; Edwards, Sandra L.; Ding, Qian; Stoddard, Gregory J.; Kinney, Anita Y.

    2016-01-01

    Background Childhood cancers typically require rigorous treatment at specialized centers in urban areas, which can create substantial challenges for families residing in remote communities. We evaluated the impact of residence and travel time on the burden of care for families of childhood cancer patients. Procedure We conducted a cross-sectional, self-administered survey of 354 caregivers of pediatric cancer patients at a children’s hospital serving a seven state area. Measures included the impact of cancer treatment on relocation, employment, schooling and finances. We evaluated these domains by rural/urban residence and travel time (>1 hour and >2 hours) to the hospital in multivariable regression models. Results Of the 29% of caregivers who reported moving residences since their child was diagnosed, 33% reported that the move was due to their child’s cancer. Rural and remote (e.g., >1 hour travel time) caregivers missed more days of work during the first month after diagnosis than did urban and local caregivers, however, these differences did not persist over the first six months of therapy. One-third of caregivers reported quitting or changing jobs as a direct result of their child being diagnosed with cancer. Rural respondents had greater out-of-pocket travel expenses and reported a significantly greater perceived financial burden. Rural patients missed more school days and were at an increased risk of having to repeat a grade. Conclusions Childhood cancer has an appreciable impact on the lives of patients and caregivers. The burden is greater for those living far from a treatment center. PMID:25131518

  10. [Alzheimer's disease and caregivers experience in home care].

    PubMed

    Daga, Eleonora; Corvo, Elisabetta; Marucci, Anna Rita; Sansoni, Julita

    2014-01-01

    The aim of this study is to investigate the experience of primary caregivers (men and women) of Alzheimer Disease dementia, in order to tailor program and project to avoid care giving burden. A qualitative phenomenological method was used and the sample was defined by data saturation. Interviews were carried out and recorded in a day care Centre, transcribed verbatim. The analysis was conducted coding common themes and phrases. Six main themes emerged. Our results are similar to those existing in literature, showing care givers as individual in great danger physically and mentally. In the light of the study it is possible to tailor a nursing model in order to improve quality of life and decrease the burden of caregivers, this model should be implemented and analyzed.

  11. Problem-Solving Intervention for Caregivers of Children with Mental Health Problems

    PubMed Central

    Gerkensmeyer, J. E.; Johnson, C. S.; Scott, E. L.; Oruche, U. M.; Lindsey, L. M.; Austin, J. K.; Perkins, S. M.

    2013-01-01

    Building Our Solutions and Connections (BOSC) focused on enhancing problem-solving skills (PSS) of primary caregivers of children with mental health problems. Aims were determining feasibility, acceptability, and effect size (ES) estimates for depression, burden, personal control, and PSS. Methods Caregivers were randomized to BOSC (n=30) or wait-list control (WLC) groups (n=31). Data were collected at baseline, post-intervention, and 3 and 6 months post-intervention. Results Three-months post-intervention, ES for burden and personal control were .07 and .08, respectively. ES for depressed caregivers for burden and personal control were 0.14 and 0.19, respectively. Conclusions Evidence indicates that the intervention had desired effects. PMID:23706887

  12. [Conception and Preliminary Evaluation of a Rehabilitation-Attending Counseling Service for Caregivers of Stroke Patients].

    PubMed

    Jungbauer, J; Krieger, T; Floren, M

    2017-02-23

    This paper presents the pilot project "The Caregivers' Guide", which is financed by the German Federal Ministry of Education and Research (BMBF). The project's concept is outreach-oriented and personal, giving constant support to relatives of stroke patients throughout rehabilitation. Its effects were reviewed in an accompanying study. A combination of qualitative and quantitative methods was chosen to gather data on the experiences and assessments of the caregivers, as well as changes during the counselling process. 62 caregivers completed questionnaires before and after the intervention. Additionally, 30 qualitative interviews were carried out. Positive effects could be observed in accordance with the project goals, especially regarding provision of appropriate information, burden reduction and strengthening clients' resources. The accompaniment by a fixed reference person was viewed as helpful, the combination of professional knowledge and emotional support was deemed most essential. The concept "The Caregivers' Guide" is suitable as an impetus of innovation regarding the development of counseling structures for family caregivers.

  13. Finding Meaning in Written Emotional Expression by Family Caregivers of Persons With Dementia.

    PubMed

    Butcher, Howard K; Gordon, Jean K; Ko, Ji Woon; Perkhounkova, Yelena; Cho, Jun Young; Rinner, Andrew; Lutgendorf, Susan

    2016-12-01

    This study tested the effect of written emotional expression on the ability to find meaning in caregiving and the effects of finding meaning on emotional state and psychological burden in 91 dementia family caregivers. In a pretest-posttest design, participants were randomly assigned to either an experimental or a comparison group. Experimental caregivers (n = 57) wrote about their deepest thoughts and feelings about caring for a family member with dementia, whereas those in the comparison group (n = 34) wrote about nonemotional topics. Results showed enhanced meaning-making abilities in experimental participants relative to comparison participants, particularly for those who used more positive emotion words. Improved meaning-making ability was in turn associated with psychological benefits at posttest, but experimental participants did not show significantly more benefit than comparison participants. We explore the mediating roles of the meaning-making process as well as some of the background characteristics of the individual caregivers and their caregiving environments.

  14. Do Age and Quality of Life of the Cancer Patient Influence Quality of Life of the Caregiver?

    PubMed Central

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

    2015-01-01

    Background There are significant burdens associated with providing care for loved ones with cancer. However, caregiver quality of life (QOL) is often overlooked. With the increasing number of older adults with cancer, it is important to determine whether a patient’s age and QOL have any association with the caregiver’s QOL. Objective The objective of our study was to describe caregiver QOL and explore whether patient age and other psychosocial factors impact caregiver QOL. Design Baseline information from patients with advanced cancer undergoing radiation and their caregivers, who were enrolled in a randomized, controlled clinical trial to test the effectiveness of a structured, multidisciplinary QOL intervention, was analyzed for this study. Measurement Caregivers completed the Caregiver Quality of Life Index—Cancer Scale (CQOLC). Both patients and caregivers completed the Linear Analogue Self-Assessment (LASA) to measure QOL, and Profile of Mood States (POMS) to measure mood states. Results Overall, 131 patient-caregiver pairs participated in the study. At baseline, caregivers of older adults (≥65 years) had higher mental (P=0.01), emotional (P=0.003), spiritual (P<0.01), and social support (P=0.03) LASA QOL scores. Caregivers of older adults also had higher baseline QOL (CQOLC, P=0.003) and mood (POMS, P=0.04) than caregivers of younger adults. Caregivers of patients with higher LASA QOL scores had higher overall (P=0.02), mental (P=0.006), physical (P=0.02), emotional (P=0.002), and spiritual LASA QOL scores (P=0.047). Conclusions Caregivers of older adults with advanced cancer demonstrated better QOL and fewer mood disturbances compared to caregivers of younger patients. When patients have good QOL, caregivers also had good QOL. PMID:24726867

  15. Effectiveness of an Interdisciplinary Palliative Care Intervention for Family Caregivers in Lung Cancer

    PubMed Central

    Sun, Virginia; Grant, Marcia; Koczywas, Marianna; Freeman, Bonnie; Zachariah, Finly; Fujinami, Rebecca; Del Ferraro, Catherine; Uman, Gwen; Ferrell, Betty

    2015-01-01

    Background Family caregivers (FCGs) experience significant deteriorations in quality of life while caring for lung cancer patients. This study tested the effectiveness of an interdisciplinary palliative care intervention for FCGs of patients diagnosed with stage I–IV non-small cell lung cancer (NSCLC). Methods FCGs who were identified by patients as the primary caregiver were enrolled in a prospective, quasi-experimental study whereby the usual care group was accrued first followed by the intervention group. FCGs in the intervention group were presented at interdisciplinary care meetings, and they also received four educational sessions organized in the physical, psychological, social, and spiritual domains. The sessions included self-care plans to support the FCG’s own needs. Caregiver burden, caregiving skills preparedness, psychological distress, and FCG QOL were assessed at baseline and 12 weeks using validated measures. Results A total of 366 FCGs were included in the primary analysis. FCGs who received the interdisciplinary palliative care intervention had significantly better scores for social well-being (5.84 vs. 6.86; p<.001) and lower psychological distress (4.61 vs. 4.20; p=.010) at 12 weeks compared to FCGs in the usual care group. FCGs in the intervention group had significantly less caregiver burden compared to FCGs in the usual care group (p=.008). Conclusions An interdisciplinary approach to palliative care in lung cancer resulted in statistically significant improvements in the FCG’s social well-being, psychological distress, and less caregiver burden. PMID:26150131

  16. Benefits of a poetry writing intervention for family caregivers of elders with dementia.

    PubMed

    Kidd, Lori I; Zauszniewski, Jaclene A; Morris, Diana L

    2011-01-01

    This pilot clinical trial tested effectiveness of a poetry writing intervention for family caregivers of elders with dementia. This paper presents findings from a larger study using mixed methods to examine outcome variables of self-transcendence, resilience, depressive symptoms, and subjective caregiver burden. Findings reported here focus on qualitative analysis of in-depth interviews conducted with participants following their poetry writing experience. A grounded theory approach was used. Themes that arose from the data support a mid-range theory of self-affirmation in caregivers with subthemes of achievement, catharsis, greater acceptance, empathy, self-awareness, reflection, creative and fun, positive challenge, and helping others.

  17. Coping and caregiving experience of parents of children and adolescents with type-1 diabetes: An exploratory study

    PubMed Central

    Grover, Sandeep; Bhadada, Sanjay; Kate, Natasha; Sarkar, Siddharth; Bhansali, Anil; Avasthi, Ajit; Sharma, Sunil; Goel, Rashi

    2016-01-01

    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

  18. The Unprepared Caregiver.

    PubMed

    Moon, Marilyn

    2017-02-01

    Years of studying health care financing and delivery does not prepare you for the actuality of dealing with a serious health event. The practical challenges of our extremely fragmented and complex health care system make it difficult to navigate this world-even when someone is there to help the patient. And, being a caregiver is a far cry from being a health care analyst. There are many lessons to be learned for improving our system: the need for skilled co-ordination support, the need for simplifying and re-orienting the various silos of postacute care, the importance of generating ways to support caregivers, and not least, promoting simple lessons in civility for providers of services.

  19. Coping With Cleft: A Conceptual Framework of Caregiver Responses to Nasoalveolar Molding

    PubMed Central

    Sischo, Lacey; Broder, Hillary L.; Phillips, Ceib

    2014-01-01

    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

  20. A Qualitative Study of Family Caregiver Experiences of Managing Incontinence in Stroke Survivors

    PubMed Central

    Tseng, Chien-Ning; Huang, Guey-Shiun; Yu, Po-Jui; Lou, Meei-Fang

    2015-01-01

    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

  1. Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol

    PubMed Central

    2014-01-01

    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

  2. Caregivers' voices: The experiences of caregivers of children who sustained serious accidental and non-accidental head injury in early childhood.

    PubMed

    Wharewera-Mika, Julie; Cooper, Erana; Kool, Bridget; Pereira, Susana; Kelly, Patrick

    2016-04-01

    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.

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

    ERIC Educational Resources Information Center

    Vroman, Kerryellen; Morency, Jamme

    2011-01-01

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

  4. Stress and Quality of Life in Urban Caregivers of Children with Poorly Controlled Asthma: A Longitudinal Analysis

    PubMed Central

    Bellin, Melissa H.; Osteen, Philip; Kub, Joan; Bollinger, Mary Elizabeth; Tsoukleris, Mona; Chaikind, Laurie; Butz, Arlene M.

    2015-01-01

    Introduction The intent of this analysis was to examine the longitudinal effects of risk and protective factors on quality of life (QOL) in caregivers of minority children with asthma. Method Caregivers (n=300) reported on demographics, child asthma characteristics, daily asthma caregiving stress, general life stress, social support and QOL. Latent growth curve modeling examined changes in QOL across 12 months as a function of stress, asthma control, and social support. Results Caregivers were primarily the biological mother (92%), single (71%), unemployed (55%), and living in poverty. Children were African American (96%), Medicaid eligible (92%), and had poorly controlled asthma (93%). Lower QOL was associated with higher life stress, greater asthma caregiving stress, and lower asthma control over time. Discussion Findings underscore the importance of assessing objective and subjective measures of asthma burden and daily life stress in clinical encounters with urban, low-income caregivers of children with poorly controlled asthma. PMID:26036621

  5. "The Church of Online Support": Examining the Use of Blogs Among Family Caregivers of Persons With Dementia.

    PubMed

    Anderson, Joel G; Hundt, Elizabeth; Dean, Morgan; Keim-Malpass, Jessica; Lopez, Ruth Palan

    2016-12-04

    Many individuals, including dementia caregivers, use blogs to share their experiences. These blogs contain rich narratives representing an untapped resource for understanding the psychosocial impact of caring for a person with dementia at the family level. The present study used blogs written by caregivers of persons with dementia to explore how these individuals leveraged this medium as part of the caregiving experience. Blogs written by self-identified informal caregivers of persons with dementia were identified using a systematic search method, and data were analyzed using a qualitative thematic analysis. Four themes emerged from the narratives: social support through communication and engagement, information gathering and seeking, reminiscing and legacy building, and altruism. By understanding the ways in which individuals providing care for persons with dementia use social media as part of the caregiving experience, family nurses can develop interventions and services aimed at improving caregiver burden and quality of life.

  6. "I do the best I can": caregivers' perceptions of informal caregiving for older adults in Belize.

    PubMed

    Vroman, Kerryellen; Morency, Jamme

    2011-01-01

    In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were the experiences of caregivers, the rewards of caregiving, and navigating the caregiver role. Caregivers identified positively with the role of care provider and they did not describe it as burdensome nor did they describe role strain. However, caregivers' complaints of poor physical health might be construed as somatic expressions of strain. The caregivers' religiosity was salient to how they viewed and coped with their caregiver role. In conclusion, culture appears to influence positively caregivers' beliefs and perceptions of caregiving in Belize. However, the expected increase in the older population and current circumstances of many caregivers and care recipients means there is a critical need for resources to support caregivers and promote aging in place.

  7. Outcomes of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers: a goal-oriented approach

    PubMed Central

    Chew, Justin; Chong, Mei-Sian; Fong, Yoke-Leng; Tay, Laura

    2015-01-01

    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

  8. Caregiver perceptions about the impact of caring for patients with wet age-related macular degeneration

    PubMed Central

    Vukicevic, M; Heraghty, J; Cummins, R; Gopinath, B; Mitchell, P

    2016-01-01

    Purpose Caregivers of older persons with eye disease, namely age-related macular degeneration (AMD), have been reported to have a higher than expected distress. Very few studies have explored caregiver perceptions as to what is important when providing care. The aim of this study was to explore the perceptions of caregivers of persons with neovascular AMD in relation to the most important aspects of caring, as described in extended answers to self-administered survey questions. Methods A cross-sectional, self-administered survey of 643 caregivers of people with neovascular AMD, comprising 27 closed-response questions and 2 open ended questions. The latter were analysed as part of this study utilising and ‘inductive' Grounded Theory approach. Results Six-hundred and forty-three caregiver responses to 2 open ended questions were analysed using an inductive approach and sorted into thematic networks. Three discrete categories arose: The Impact of Caring; Injections and Information and Activities of Daily Living. Conclusions Most caregivers were family caregivers and were found to be compassionate and self-sacrificing. They accepted additional responsibility whilst providing an encouraging environment for their care recipient. As a result, they experience distress and consider their own needs as secondary. Very few seek or receive respite and this added burden can have a negative impact upon the relationship between caregiver and care recipient. PMID:26611848

  9. The Male Face of Caregiving: A Scoping Review of Men Caring for a Person With Dementia.

    PubMed

    Robinson, Carole A; Bottorff, Joan L; Pesut, Barbara; Oliffe, John L; Tomlinson, Jamie

    2014-09-01

    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.

  10. Caring for the Caregivers: Patterns of Organizational Caregiving.

    ERIC Educational Resources Information Center

    Kahn, William A.

    1993-01-01

    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…

  11. Depressive symptoms in Chinese family caregivers of patients with heart failure

    PubMed Central

    Hu, Xiaolin; Huang, Wenxia; Su, Yonglin; Qu, Moying; Peng, Xingchen

    2017-01-01

    Abstract Depressive symptoms are related to negative health outcomes in caregivers of patients with HF. Understanding the factors that are associated with depressive symptoms among caregivers is essential to providing appropriate interventions. Little is known about which status and factors are related to depressive symptoms among Chinese caregivers of patients with heart failure. This study aimed to investigate the status of depressive symptoms and to identify the factors that are associated with depressive symptoms in family caregivers of patients with heart failure in China. A cross-sectional design and a convenience sample were used. Participants (N = 134) from 1 hospital in Chengdu were recruited from June 2013 to June 2014. The following measurement tools were used in this study: Center for Epidemiologic Studies Depression Scale, Hospital Anxiety and Depression Scale, Coping Strategies Simplified Coping Style Questionnaire, and Zarit Burden Interview. A hierarchical multiple linear regression analysis was used to determine which factors were associated with depressive symptoms. The results showed that 31% of the caregivers experienced depressive symptoms. The type of payment for treatment (b = −0.312, P < 0.01), readmissions within the last 3 months (b = 0.397, P < 0.01), duration of caregiving (b = −0.213, P < 0.05), caregiver burden (b = 0.299, P < 0.05), active coping (b = −0.235, P < 0.01), and negative coping (b = 0.245, P < 0.05) were related to caregivers’ depressive symptoms. Fifty-four percent of the variance in caregivers’ depressive symptoms was explained by these factors. The caregiver depressive symptoms in China were higher than those reported in studies that were conducted in Western countries. Caregiver depressive symptoms can be improved by providing support for new caregivers (with a caregiving duration of less than 1 year), reducing readmissions, easing caregiver burden, and

  12. Buffet Load Alleviation

    NASA Technical Reports Server (NTRS)

    Ryall, T. G.; Moses, R. W.; Hopkins, M. A.; Henderson, D.; Zimcik, D. G.; Nitzsche, F.

    2004-01-01

    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.

  13. Childhood Obesity: The Caregiver's Role.

    ERIC Educational Resources Information Center

    Haschke, Bernadette

    2003-01-01

    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)

  14. Quality Infant/Toddler Caregiving.

    ERIC Educational Resources Information Center

    Honig, Alice Sterling

    Caregiver-infant interactions in the first years of a child's life provide models and shape patterns of responding that can have consequences throughout the life-span. Research and practice have produced knowledge about the sensitivity of outcomes to characteristics of the infant nurturing situation. Infant caregivers should accept babies' need…

  15. Resurgence of Infant Caregiving Responses

    ERIC Educational Resources Information Center

    Bruzek, Jennifer L.; Thompson, Rachel H.; Peters, Lindsay C.

    2009-01-01

    Two experiments were conducted to identify the conditions likely to produce resurgence among adult human participants. The preparation was a simulated caregiving context, wherein a recorded infant cry sounded and was terminated contingent upon targeted caregiving responses. Results of Experiment 1 demonstrated resurgence with human participants in…

  16. Special Section: Educating Elderly Caregivers.

    ERIC Educational Resources Information Center

    Epstein, Bernice A.; And Others

    1990-01-01

    Four articles in this special section report on (1) Arizona curriculum for home-based caregivers of the elderly in rural communities (Epstein, Koenig); (2) educational programs for nursing home caregivers (Marsden); (3) extension programs for helping low-income elderly with money management (Koonce); and (4) energy education for the elderly…

  17. Emotional Availability: Foster Caregiving Experience

    ERIC Educational Resources Information Center

    Nelson, Dean R.

    2012-01-01

    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…

  18. Consumption of Drugs and Nonpharmacological Therapies in Caregivers of Patients with Alzheimer's Disease: A Case-Control Study in Madrid

    PubMed Central

    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

    2016-01-01

    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

  19. The Burden of Inequity--And What Schools Can Do about It

    ERIC Educational Resources Information Center

    Mayfield, Vernita

    2017-01-01

    Black students may have little choice in what social burdens they must bear, but educators have a choice in alleviating them. Schools with a genuine commitment for disrupting inequities find ways to lighten the unenviable burdens black students bear. The author recommends that schools disaggregate data by race, provide ongoing professional…

  20. Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis.

    PubMed

    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

    2015-01-01

    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.

  1. Caregiver Mental Health and Potentially Harmful Caregiving Behavior: The Central Role of Caregiver Anger

    ERIC Educational Resources Information Center

    MacNeil, Gordon; Kosberg, Jordan I.; Durkin, Daniel W.; Dooley, W. Keith; DeCoster, Jamie; Williamson, Gail M.

    2010-01-01

    Purpose: Caregivers feeling stress and experiencing mental health problems can be at risk for engaging in abusive acts against elderly care recipients. Potentially harmful behavior (PHB) was used as a measure of caregivers' engagement in, or fear of engagement in, behavior that places dependent care recipients at risk of physical and/or…

  2. Global Burden of Stroke.

    PubMed

    Feigin, Valery L; Norrving, Bo; Mensah, George A

    2017-02-03

    On the basis of the GBD (Global Burden of Disease) 2013 Study, this article provides an overview of the global, regional, and country-specific burden of stroke by sex and age groups, including trends in stroke burden from 1990 to 2013, and outlines recommended measures to reduce stroke burden. It shows that although stroke incidence, prevalence, mortality, and disability-adjusted life-years rates tend to decline from 1990 to 2013, the overall stroke burden in terms of absolute number of people affected by, or who remained disabled from, stroke has increased across the globe in both men and women of all ages. This provides a strong argument that "business as usual" for primary stroke prevention is not sufficiently effective. Although prevention of stroke is a complex medical and political issue, there is strong evidence that substantial prevention of stroke is feasible in practice. The need to scale-up the primary prevention actions is urgent.

  3. Care for the cancer caregiver: A systematic review

    PubMed Central

    APPLEBAUM, ALLISON J.; BREITBART, WILLIAM

    2016-01-01

    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

  4. A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes

    PubMed Central

    Tanner, Jeremy A; Black, Betty S; Johnston, Deirdre; Hess, Edward; Leoutsakos, Jeannie-Marie; Gitlin, Laura N; Rabins, Peter V; Lyketsos, Constantine; Samus, Quincy M

    2014-01-01

    Objectives To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. Design 18-month randomized controlled trial of 289 community-living care recipient (CR)/caregiver dyads. Setting 28 postal code areas of Baltimore, MD. Participants Informal caregivers (i.e., an unpaid individual who is regularly relied on by the CR for assistance). Intervention All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by non-clinical community-workers to address unmet care needs through individualized care planning; referral and linkage to dementia services; provision of caregiver dementia education and skill building strategies; and care progress monitoring by an interdisciplinary team. Measurements Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. Results Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, but there was no statistically significant between-group difference. There were no significant group differences in most caregiver burden measures, depression, or QOL. There was a potentially clinically- relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with controls. Conclusions No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. Yet, MIND appeared to have had a modest, and clinically-meaningful, impact on informal caregiver time spent with CRs. PMID:25260557

  5. Can cultural values help explain the positive aspects of caregiving among Chinese American caregivers?

    PubMed

    Tang, Maggie

    2011-01-01

    This study used an adaptation of the caregivers' stress model to examine the positive aspects of caregiving with 113 Chinese American family caregivers who provided care to their elderly relatives. The hierarchical multiple regression analysis indicated that combination of caregiver background characteristics, stressors, and cultural values had direct effects on positive aspects of caregiving. Unlike previous studies in which cultural values were not measured, this study found that cultural values helped explain positive aspects of caregiving. Specifically, cultural values, caregiver's health, and caregiver's age predicted positive aspects of caregiving. Service implications are discussed based upon the findings.

  6. A problem solving intervention for caregivers of cancer patients.

    PubMed

    Toseland, R W; Blanchard, C G; McCallion, P

    1995-02-01

    Effects of a psychosocial intervention program on spouses of cancer patients, and on the cancer patients themselves, will be described. A six session intervention program, which included support, problem-solving and coping skills, was designed to help spouses to cope with the stress of caring for their partner. Forty male and forty female spouses of cancer patients of a regional oncology center were randomly assigned to intervention or usual treatment conditions. Spouses and patients were interviewed prior to intervention, and within two weeks after intervention on a battery of assessment instruments including: (1) demographic variables; (2) psychological variables; (3) health status; (4) social supports; (5) assessment of pressing problems; (6) coping skills; (7) burden levels; and (8) marital satisfaction. Participants were found to be more psychologically distressed than the general population but were not as distressed as psychiatric outpatients. Differences were also found in marital satisfaction and coping activities, when compared to the general population. No significant differences between the conditions were found on any of the measures. Caregivers' level of caregiving activities proved to be low. It is suggested that this may account for why the intervention only appeared effective for a distressed subsample of the caregivers in the study. The implications of these findings is discussed. Recommendations are also made for future research on cancer caregivers.

  7. Needs of caregivers of the patients with dementia.

    PubMed

    Rosa, E; Lussignoli, G; Sabbatini, F; Chiappa, A; Di Cesare, S; Lamanna, L; Zanetti, O

    2010-01-01

    This study was conducted to isolate the needs families express both for medical and psychological care, and for educational and social support in 112 caregivers of patients affected by moderate to severe dementia (mini mental state examination=MMSE score: 9+/-7) consecutively recruited at our Memory Clinic, to develop approaches as individualized as possible. The medical needs caregivers express are mainly relative to a better knowledge of the disease (78%) and the exact diagnosis (65%); the education-related needs are mainly relative to the acquisition of communicational skills (83%) and the optimal handling of cognitive (77%) and behavioral disorders (81%); the psychological ones mainly concern the area of assistance induced emotional stress management (37%) and the elaboration of feelings such as anxiety, rage and guilt (49%). Variance analysis shows a correlation between emotional caregivers' needs and the subjective and objective burdens they carry. Despite the attention to the role families play in caring for patients with a diagnoses of moderate to severe dementia, caregivers still express low levels of illness-consciousness and high levels of psychological discomfort. A lot more ought to be done in order to provide better information about the disease, about appropriate cognitive and behavioral disorder management skills, and about viable psychological support.

  8. Systematic Assessment of Caregiving Skill Performance by Individuals with Tetraplegia and Their Caregivers

    DTIC Science & Technology

    2013-10-01

    Caregiving Skill Performance by Individuals with Tetraplegia and Their Caregivers PRINCIPAL INVESTIGATOR: Jeanne M. Zanca, PhD, MPT...5a. CONTRACT NUMBER Systematic Assessment of Caregiving Skill Performance by Individuals with Tetraplegia and Their Caregivers 5b. GRANT NUMBER...systematically evaluate and describe competence in self-direction of care by persons with tetraplegia (PWTs) and provision of care by their caregivers

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

    ERIC Educational Resources Information Center

    Sodowsky, Karen

    2012-01-01

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

  10. Depression, anxiety and quality of life in caregivers of long-term home care patients.

    PubMed

    Yıkılkan, Hülya; Aypak, Cenk; Görpelioğlu, Süleyman

    2014-06-01

    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.

  11. Quality of life in caregivers of patients with schizophrenia: A literature review

    PubMed Central

    Caqueo-Urízar, Alejandra; Gutiérrez-Maldonado, José; Miranda-Castillo, Claudia

    2009-01-01

    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

  12. Exploring Spirituality in Family Caregivers of Patients With Primary Malignant Brain Tumors Across the Disease Trajectory

    PubMed Central

    Newberry, Alyssa G.; Jean Choi, Chien-Wen; Donovan, Heidi S.; Schulz, Richard; Bender, Catherine; Given, Barbara; Sherwood, Paula

    2013-01-01

    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

  13. A day at a time: caregiving on the edge in advanced COPD

    PubMed Central

    Simpson, A Catherine; Young, Joanne; Donahue, Margaret; Rocker, Graeme

    2010-01-01

    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

  14. How Do Family Caregivers of Older People Give Up Caregiving?

    PubMed Central

    Mortazavi, Hamed; Peyrovi, Hamid; Joolaee, Soodabeh

    2015-01-01

    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

  15. Subjective well-being among family caregivers of individuals with developmental disabilities: the role of affiliate stigma and psychosocial moderating variables.

    PubMed

    Werner, Shirli; Shulman, Cory

    2013-11-01

    Studies have shown that stigmatization is linked to lower quality of life; however, only scant research has examined the association between family caregivers' internalization of stigma (affiliate stigma) and their subjective quality of life (subjective well-being, SWB). Furthermore, studies have rarely examined this association via comparison between caregivers of individuals with different developmental disabilities in addition to examining the influence of psychosocial protective factors. These were the aims of the current study. Family caregivers (N=176) of individuals with autism spectrum disorders (ASD), intellectual disabilities (ID), and physical disabilities (PD) completed a self-report structured questionnaire including scales measuring SWB, affiliate stigma, burden, positive meaning in caregiving, social support and self-esteem. Results showed that SWB of family caregivers was below the average normative level and especially low for caregivers of individuals with ASD. The strongest predictors of SWB were caregivers' self-esteem, social support, positive meaning in caregiving, and affiliate stigma. Furthermore, an interaction was found between affiliate stigma and diagnosis, showing that among caregivers of individuals with ASD, greater levels of stigma were associated with lower ratings of SWB, whereas such an association was not found among caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers across the life-span in order to decrease stigma, improve social support and self-esteem and improve SWB. Further, findings point to the need to respond differentially to the various developmental disabilities.

  16. Dementia, Caregiving, and Controlling Frustration

    MedlinePlus

    ... calling a friend, praying, meditating, singing, listening to music or taking a bath. Try experimenting with different ... direct support services for caregivers of those with Alzheimer's disease, stroke, traumatic brain injury, Parkinson's and other ...

  17. Burden of Mental Illness

    MedlinePlus

    ... Greenwald S, Weissman MM, Mann JJ. Rates of lifetime suicide attempt and rates of lifetime major depression in ... ER, Davidson JR, Ballenger JC, Fyer AJ. The economic burden of anxiety disorders in the 1990s. J ...

  18. Relationship of social support and social burden to repeated breast cancer screening in the women's health initiative.

    PubMed

    Messina, Catherine R; Lane, Dorothy S; Glanz, Karen; West, Delia Smith; Taylor, Vicky; Frishman, William; Powell, Lynda

    2004-11-01

    Direct and interactive effects of social support, social burden (caregiving, negative life events, and social strain), education, and income on repeated use of breast cancer screening among a large (N=55,278), national sample of postmenopausal women participating in the Women's Health Initiative observational study were examined. Repeated screening decreased as emotional/informational support and positive social interactions decreased (ps<.01). Repeated mammography decreased with frequent caregiving (p<.01). Less social strain reduced the frequency of repeated breast self-examinations (BSEs; ps<.01), but frequent caregiving and more negative life events increased repeated use of BSE (ps<.01). Interactive effects suggested that emotional/informational but not tangible support is associated with repeated mammography and clinical breast examinations (ps<.01) and may be particularly important among low-income older women, especially those burdened by caregiving.

  19. Satisfaction with Life of Schizophrenia Outpatients and Their Caregivers: Differences between Patients with and without Self-Reported Sleep Complaints

    PubMed Central

    Afonso, Pedro; Cañas, Fernando; Bobes, Julio; Bernardo Fernandez, Ivan; Guzman, Carlos

    2013-01-01

    Patients with schizophrenia often present sleep complaints, but its relationship with general satisfaction with life (SWL) and burden for caregivers has been understudied. We aimed to assess the differences in SWL between patients with and without self-reported sleep disturbances and that of their caregivers. In a noninterventional study, 811 schizophrenia adult outpatients were screened for their subjective perception of having (or not) sleep disturbances and evaluated with the Brief Psychiatric Rating Scale (BPRS) and the Pittsburgh Sleep Quality Index (PSQI). Patients self-reporting sleep disturbances were significantly more symptomatic (P < 0.001), presented significantly worse family support (P = 0.0236), and self-reported worse SWL in all domains. Caregivers of patients with schizophrenia self-reporting sleep disturbances also reported worse SWL in all domains, as compared to caregivers of patients without subjective sleep disturbances. Patient and caregivers' SWL was significantly correlated to patients' quality of sleep (P < 0.0001 for all domains). Patient' and caregivers' SWL was negatively affected by patients' poor quality of sleep. We found that patients self-reporting sleep disturbances showed greater symptom severity, worse quality of sleep, worse SWL, and less caregiver support. SWL was also worse for caregivers of patients with schizophrenia reporting sleep disturbances. PMID:24288609

  20. Work Stress, Caregiving and Allostatic Load: Prospective results from Whitehall II cohort study

    PubMed Central

    Dich, Nadya; Lange, Theis; Head, Jenny; Rod, Naja Hulvej

    2015-01-01

    Objective Studies investigating health effects of work and family stress usually consider these factors in isolation. The present study investigated prospective interactive effects of job strain and informal caregiving on allostatic load (AL), a multisystem indicator of physiological dysregulation. Methods Subjects were 7,007 British civil servants from the Whitehall II cohort study. Phase 3 (1991-1994) served as the baseline, Phases 5 (1997-1999) and 7 (2002-2004) as follow-ups. Job strain (high job demands combined with low control) and caregiving (providing care to aged or disabled relatives) were assessed at baseline. AL index (possible range 0-9) was assessed at baseline and both follow-ups based on 9 cardiovascular, metabolic and immune biomarkers. Linear mixed effect models were used to examine the association of job strain and caregiving with AL. Results High caregiving burden (above the sample median weekly hours of providing care) predicted higher AL levels, with the effect strongest in those also reporting job strain [b = 0.36, 95% CI: 0.01– 0.71)]; however, the interaction between job strain and caregiving was not significant (p = 0.56). Regardless of job strain, participants with low caregiving burden (below sample median) had lower subsequent AL levels than non-caregivers [b = 0.22, 95% CI: 0.06–0.37]. Conclusions The study provides some evidence for adverse effects of stress at work combined with family demands on physiological functioning. However, providing care to others may also have health protective effects if it does not involve excessive time commitment. PMID:25984826

  1. Alleviating Stress for Women Administrators.

    ERIC Educational Resources Information Center

    Ten Elshof, Annette; Tomlinson, Elaine

    1981-01-01

    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…

  2. Attitudes and burden in relatives of patients with schizophrenia in a middle income country

    PubMed Central

    2011-01-01

    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

  3. Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring.

    PubMed

    Totsika, Vasiliki; Hastings, Richard P; Vagenas, Dimitrios

    2016-09-22

    There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

  4. Recruiting Dementia Caregivers Into Clinical Trials: Lessons Learnt From the Australian TRANSCENDENT Trial.

    PubMed

    Leach, Matthew J; Ziaian, Tahereh; Francis, Andrew; Agnew, Tamara

    2016-01-01

    The burden on those caring for a person with dementia is substantial. Although quality research assists in addressing the needs of these caregivers, recruiting caregivers into clinical studies is often problematic. This investigation explores the difficulties and successes in recruiting dementia caregivers into community-based clinical research by reporting the findings of a mixed-method substudy of a multicenter randomized controlled trial involving 40 community-dwelling dementia caregivers living in Adelaide, South Australia. Data for the substudy were derived from standardized trial monitoring documentation and structured telephone interviews. From a total of 16 distinct methods used across a 12-month recruitment campaign, the most cost-effective strategy was the distribution of flyers through a single study site. This approach generated the greatest number of enrollments of all methods used, achieving a 67% recruitment yield. The least cost-effective strategy, with a 0% recruitment yield, was the publication of a newspaper advertisement. Themes that emerged from the interviews pointed toward 5 key facilitators and 3 barriers to future trial recruitment. This study has generated new insights into the effective recruitment of dementia caregivers into clinical trials. We anticipate that these lessons learnt will assist in shaping the recruitment strategies of future studies of dementia caregivers.

  5. Family Caregivers of Women with Physical Disabilities

    PubMed Central

    Elliott, Timothy R.; Berry, Jack W.; Shewchuk, Richard M.; Oswald, Kimberly D.; Grant, Joan

    2008-01-01

    Cross-sectional, correlational analyses of data from two separate studies were conducted to examine the correlates of adjustment among family caregivers of women with disabilities. Participants included 40 caregivers of women with spinal cord injuries in the first study and 53 caregivers of women with cerebral palsy, traumatic brain injury, and other neuromuscular disabilities in the second study. It was hypothesized that a negative problem-solving style would be associated with greater caregiver distress in both studies, and that caregiver adjustment would be associated with care recipient depression in the second study. As expected, results indicated that a higher negative orientation toward solving problems was associated with caregiver depression and lower well-being. However, in the second study, caregiver characteristics were not associated with care recipient depression. These data indicate that considerable variability exists in caregiver adjustment. Methodological limitations and the implications for research, service, and policy formation are! discussed. PMID:18716670

  6. Taking Care of You: Support for Caregivers

    MedlinePlus

    ... happiness. Be aware of the signs of "caregiver burnout." Caregiver burnout is a true state of exhaustion, both physical ... autopilot, they're not usually quick to recognize burnout in themselves. Other people might notice the symptoms ...

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

    ERIC Educational Resources Information Center

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

    2008-01-01

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

  8. [Quantitative evaluation of the burden of those giving home care for senile dementia of Alzheimer type subjects using the burnout scale of pines].

    PubMed

    Kameda, N; Hattori, A; Nishinaga, M; Tuchimochi, H; Nakahara, K; Oouchi, A; Matsushita, T; Kanemaru, K; Yamanouchi, H; Orimo, H

    2001-05-01

    We quantitatively measured the physical and psychological burden of caregivers of 25 patients with senile dementia of Alzheimer type (SDAT). The Barthel Index (BADL, full score: 20 points) and the caregiver burden in terms of physical symptoms correlated well (r = -0.964, p < 0.001), as did the degree of abnormal behavior and caregiver burden in terms of psychological symptoms (r = 0.946, p < 0.001). The correlation with the burnout scale (BOS) of Pines was best when both factors of psychological and physical symptoms were included. The correlation between BOS and the caregiver burden in terms of both physical and psychological symptoms was r = 0.874, p < 0.001, and the correlation between BOS and "the degree of abnormal behavior" +(20- "BADL") was r = 0.853, p < 0.001. The burden in terms of physical symptoms increased as the BADL score decreased, but the burden in terms of psychological symptoms increased initially and decreased in the last phase of the disease. We conclude that the BOS score of SDAT caregivers was stable in the initial phase, then increased rapidly, thereafter preserved high, and dropped rapidly as the BADL score decreased.

  9. Impact of home care management on the involvement of informal caregivers by formal caregivers.

    PubMed

    van Wieringen, Marieke; Broese van Groenou, Marjolein I; Groenewegen, Peter

    2015-01-01

    This study explores the link between management characteristics of home care agencies and the involvement of informal caregivers in caregiving. Based on a study of policy documents of two agencies and semi-structured interviews with five team managers and 31 formal caregivers, we conclude that, although the importance of involving informal caregivers is emphasized in official documentation, actual contact with informal caregivers is often lacking. Comparison of the work processes of the two agencies shows that contact with informal caregivers and their potential involvement are enhanced by smaller teams, less task division, and clarity about the responsibilities of formal caregivers.

  10. Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation.

    PubMed

    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

    2016-01-01

    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.

  11. Caregivers' Retirement Congruency: A Case for Caregiver Support

    ERIC Educational Resources Information Center

    Humble, Aine M.; Keefe, Janice M.; Auton, Greg M.

    2012-01-01

    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…

  12. Widening the Generational Circle: Family Caregivers.

    ERIC Educational Resources Information Center

    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…

  13. Changes in Adult Child Caregiver Networks

    ERIC Educational Resources Information Center

    Szinovacz, Maximiliane E.; Davey, Adam

    2007-01-01

    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…

  14. TCARE: Tailored Caregiver Assessment and Referral

    ERIC Educational Resources Information Center

    Montgomery, Rhonda; Kwak, Jung

    2008-01-01

    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…

  15. Health Behaviors among Baby Boomer Informal Caregivers

    ERIC Educational Resources Information Center

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

    2012-01-01

    Purpose of the Study: This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal…

  16. Medically Complex Home Care and Caregiver Strain

    ERIC Educational Resources Information Center

    Moorman, Sara M.; Macdonald, Cameron

    2013-01-01

    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…

  17. Caregiver Health and Safety, Beginnings Workshop.

    ERIC Educational Resources Information Center

    Aronson, Susan S.; Rafanello, Donna; Wortman, Alicia M.; Buffin, Lilli-ann; Albrecht, Kay

    2001-01-01

    Presents five articles on health and safety of caregivers: (1) "Taking Care of Caregivers: Wellness for Every Body" (Aronson); (2) "Caregiver Mental Health" (Aronson); (3) "Show and Tell: Modeling Healthy Behaviors and Attitudes" (Rafanello); (4) "Preventing Work-Related Musculoskeletal Injuries" (Wortman);…

  18. Family Caregiver Identity: A Literature Review

    ERIC Educational Resources Information Center

    Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael

    2015-01-01

    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…

  19. Global economic burden of schizophrenia: a systematic review

    PubMed Central

    Chong, Huey Yi; Teoh, Siew Li; Wu, David Bin-Chia; Kotirum, Surachai; Chiou, Chiun-Fang; Chaiyakunapruk, Nathorn

    2016-01-01

    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

  20. Validity and reliability of the Spanish version of the Involvement Evaluation Questionnaire among caregivers of patients with eating disorders.

    PubMed

    González, Nerea; Bilbao, Amaia; Padierna, Angel; Martín, Josune; Orive, Miren; Quintana, José M

    2012-12-30

    The Involvement Evaluation Questionnaire (IEQ) was developed to evaluate burden among caregivers of patients with schizophrenia. We aimed to examine its psychometric properties among caregivers of patients with eating disorders (ED). A prospective study was carried out, recruiting caregivers of patients with an ED attending two outpatient clinics in Bizkaia, Spain. Caregivers provided sociodemographic information and completed the Involvement Evaluation Questionnaire (IEQ), the Hospital Anxiety and Depression Scale (HADS), the Short-Form 12 (SF-12) and the Anorectic Behaviour Observation Scale (ABOS). The same information was requested one year later. The confirmatory factor analysis (CFA) provided satisfactory fit indexes. Almost all of the factor loadings were above 0.40. Cronbach's alpha coefficients were mostly superior to 0.70. The correlation coefficients between the IEQ domains and the other questionnaires were lower than the Cronbach's alpha coefficients. Known-groups validity was supported by significant differences in the IEQ mean scores according to certain variables, as contact hours, living with the patient, type of caregiver and gender. The indexes employed for the evaluation of responsiveness were between 0.13 and 0.99. The IEQ has good psychometric properties and can be used to evaluate burden among caregivers of patients with ED.

  1. Caring for Children With Tuberous Sclerosis Complex: What Is the Physical and Mental Health Impact on Caregivers?

    PubMed

    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

    2015-10-01

    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.

  2. Impact of living with bipolar patients: Making sense of caregivers’ burden

    PubMed Central

    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

    2014-01-01

    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

  3. A resilience intervention involving mindfulness training for transplant patients and their caregivers.

    PubMed

    Stonnington, Cynthia M; Darby, Betty; Santucci, Angela; Mulligan, Pamela; Pathuis, Patricia; Cuc, Andrea; Hentz, Joseph G; Zhang, Nan; Mulligan, David; Sood, Amit

    2016-11-01

    Solid organ and stem cell transplant patients and their caregivers report a substantial level of distress. Mindfulness-based stress reduction has been shown to alleviate distress associated with transplant, but there is limited experience in this population with other mindfulness-based interventions, or with combined transplant patient and caregiver interventions. We evaluated a novel, 6-week mindfulness-based resilience training (MBRT) class for transplant patients and their caregivers that incorporates mindfulness practice, yoga, and neuroscience of stress and resilience. Thirty-one heart, liver, kidney/pancreas, and stem cell transplant patients and 18 caregivers at Mayo Clinic in Arizona participated. Measures of stress, resilience, depression, anxiety, health-related quality of life, positive and negative affect, and sleep were completed at baseline, 6 weeks, and 3 months postintervention. At 6 weeks and 3 months, patients demonstrated significant (P<.005) improvements from baseline in measures of perceived stress, depression, anxiety, and negative affect. Quality-of-life mental component (P=.006) and positive affect (P=.02) also improved at follow-up. Most participants adhered to the program, were satisfied with class length and frequency, and reported improved well-being as a result of the class. MBRT holds promise as an intervention to enhance resilience and manage stress for transplant patients and their caregivers.

  4. Pediatric Disability and Caregiver Separation

    ERIC Educational Resources Information Center

    McCoyd, Judith L. M.; Akincigil, Ayse; Paek, Eun Kwang

    2010-01-01

    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…

  5. [Grieving among relatives and caregivers].

    PubMed

    Pascual, Angel María; Santamaría, Juan Luis

    2009-11-01

    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.

  6. What Are the Caregiver's Rights?

    MedlinePlus

    ... your feelings with friends or joining a support group may be a good way to ease the pressure you feel as a caregiver. The Well Spouse Association wellspouse.org A nonprofit group formed to provide support and advocacy for the ...

  7. Processes of user participation among formal and family caregivers in home-based care for persons with dementia.

    PubMed

    Larsen, Lill Sverresdatter; Normann, Hans Ketil; Hamran, Torunn

    2017-02-01

    Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was 'negotiating participation in decisions'. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients' legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

  8. Translation of a Dementia Caregiver Intervention for Delivery in Homecare as a Reimbursable Medicare Service: Outcomes and Lessons Learned

    ERIC Educational Resources Information Center

    Gitlin, Laura N.; Jacobs, Mimi; Earland, Tracey Vause

    2010-01-01

    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…

  9. The Resources for Enhancing Alzheimer’s Caregiver Health (REACH): Project Design and Baseline Characteristics

    PubMed Central

    Wisniewski, Stephen R.; Belle, Steven H.; Marcus, Susan M.; Burgio, Louis D.; Coon, David W.; Ory, Marcia G.; Burns, Robert; Schulz, Richard

    2008-01-01

    The Resources for Enhancing Alzheimer’s Cargiver Health (REACH) project was designed to test promising interventions for enhancing family caregiving for persons with dementia. The purpose of this article is to describe the research design, interventions, and outcome measures used in REACH and to characterize the sample recruited for the study. Nine interventions and 2 control conditions were implemented at 6 sites; 1,222 dyads were randomly assigned to an intervention or a control condition. The caregiver sample was 18.6% male with an average age of 62.3 years (56% Caucasian, 24% Black, and 19% Hispanic). Caregivers reported high levels of depressive symptoms and moderate burden. Care recipients were older, with a mean age of 79, and were moderately to severely impaired with mean Mini-Mental State Exam scores of 13/30. PMID:14518801

  10. Caregivers had neighbourhood support but perceived it unsatisfactory and worsened: England Community Life Survey, 2012-2014.

    PubMed

    Shiue, Ivy

    2017-03-11

    There has been limited research studying neighbourhood support for caregivers. Therefore, the aim of the present study was to investigate the support from neighbourhoods between both caregivers and non-caregivers in a country-wide and population-based setting. Data were retrieved from England Community Life Survey, 2012-2014, a new annual household survey conducted by face-to-face interview since 2012, with a representative sample size of 5-6000 adult (aged 16 years and over) resident per year in England. Chi-square test and logistic regression modelling were performed to examine the variance in support from and perception toward neighbourhoods between caregivers and non-caregivers. Of 15,320 study participants, 2315 (16.0%) had a caring responsibility. There was not much variance in feeling belonging, comfortably asking neighbours to keep keys, comfortably asking neighbours to mind children, believing neighbours pulling together and trusting people in the neighbourhood between caregivers and non-caregivers. However, caregivers seemed to be more likely to chat to neighbours (OR 0.77, 95% CI 0.69-0.87, P < 0.001) and comfortably ask neighbours to help collect grocery (OR 0.89, 95% CI 0.81-0.98, P = 0.023). In addition, caregivers tended to perceive their neighbourhoods unsatisfactory (OR 1.17, 95% CI 1.05-1.32, P = 0.007) and worsened in the last 2 years (OR 1.36, 95% CI 1.22-1.51, P < 0.001). For future research, a longitudinal neighbourhood monitoring surveillance for all people would be suggested. For practice and policy, environmental health and nursing programs might need to extend education trainings and interventions to cover all neighbourhoods at different time points that can lessen both disease and caregiving burden and therefore optimize health and quality of life.

  11. Caregivers' attentional bias to pain: does it affect caregiver accuracy in detecting patient pain behaviors?

    PubMed

    Mohammadi, Somayyeh; Dehghani, Mohsen; Khatibi, Ali; Sanderman, Robbert; Hagedoorn, Mariët

    2015-01-01

    Attentional bias to pain among family caregivers of patients with pain may enhance the detection of pain behaviors in patients. However, both relatively high and low levels of attentional bias may increase disagreement between patients and caregivers in reporting pain behaviors. This study aims to provide further evidence for the presence of attentional bias to pain among family caregivers, to examine the association between caregivers' attentional bias to pain and detecting pain behaviors, and test whether caregivers' attentional bias to pain is curvilinearly related to patient and caregiver disagreement in reporting pain behaviors. The sample consisted of 96 caregivers, 94 patients with chronic pain, and 42 control participants. Caregivers and controls completed a dot-probe task assessing attention to painful and happy stimuli. Both patients and caregivers completed a checklist assessing patients' pain behavior. Although caregivers did not respond faster to pain congruent than pain incongruent trials, caregiver responses were slower in pain incongruent trials compared with happy incongruent trials. Caregivers showed more bias toward pain faces than happy faces, whereas control participants showed more bias toward happy faces than pain faces. Importantly, caregivers' attentional bias to pain was significantly positively associated with reporting pain behaviors in patients above and beyond pain severity. It is reassuring that attentional bias to pain was not related to disagreement between patients and caregivers in reporting pain behaviors. In other words, attentional bias does not seem to cause overestimation of pain signals.

  12. Family caregiver challenges in dementia care in Australia and China: a critical perspective

    PubMed Central

    2014-01-01

    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

  13. Patients', doctors', and caregivers' assessment of disability using the UPDRS-ADL section: are these ratings interchangeable?

    PubMed

    Martínez-Martín, Pablo; Benito-León, Julian; Alonso, Fernando; Catalán, M José; Pondal, Margarita; Tobías, Aurelio; Zamarbide, Ivana

    2003-09-01

    This multicenter study sought to analyze the validity and reliability of the Unified Parkinson's Disease Rating Scale (UPDRS)-section 2 (Activities of Daily Living, ADL) as applied by patients and caregivers. Sixty pairs of PD patients-caregivers were enrolled for study purposes. Neurologists used a set of scales to determine disease severity and patients' functional state. Patients and caregivers used adapted versions of the UPDRS-section 2 in tandem with other measures. Wilcoxon and Mann-Whitney tests, weighted kappa, intraclass and Spearman's correlation coefficients, as well as multivariate linear regression models were applied. On the whole, PD patient self-assessment and caregiver evaluation of patients' disability showed close concordance with neurologists' ratings. Correlation between caregiver ratings and clinical evaluation tended to be slightly lower than that for patient-based self-assessment. Depression showed a positive correlation with disability and had a nonsystematic influence on UPDRS-section 2 (ADL) scores. As expected, there was a significant correlation between perceived disability and health-related quality of life measures. Caregiver burden did not reduce the level of agreement with neurologists as to the overall rating of any given patient's disability. In PD, UPDRS-section 2-based assessment of disability by patients themselves and caregivers is a valid and reliable outcome.

  14. Economic Burden for Lung Cancer Survivors in Urban China

    PubMed Central

    Zhang, Xin; Liu, Shuai; Liu, Yang; Du, Jian; Fu, Wenqi; Zhao, Xiaowen; Huang, Weidong; Zhao, Xianming; Liu, Guoxiang; Mao, Zhengzhong; Hu, Teh-wei

    2017-01-01

    Background: With the rapid increase in the incidence and mortality of lung cancer, a growing number of lung cancer patients and their families are faced with a tremendous economic burden because of the high cost of treatment in China. This study was conducted to estimate the economic burden and patient responsibility of lung cancer patients and the impact of this burden on family income. Methods: This study uses data from a retrospective questionnaire survey conducted in 10 communities in urban China and includes 195 surviving lung cancer patients diagnosed over the previous five years. The calculation of direct economic burden included both direct medical and direct nonmedical costs. Indirect costs were calculated using the human capital approach, which measures the productivity lost for both patients and family caregivers. The price index was applied for the cost calculation. Results: The average economic burden from lung cancer was $43,336 per patient, of which the direct cost per capita was $42,540 (98.16%) and the indirect cost per capita was $795 (1.84%). Of the total direct medical costs, 35.66% was paid by the insurer and 9.84% was not covered by insurance. The economic burden for diagnosed lung cancer patients in the first year following diagnosis was $30,277 per capita, which accounted for 171% of the household annual income, a percentage that fell to 107% after subtracting the compensation from medical insurance. Conclusions: The economic burden for lung cancer patients is substantial in the urban areas of China, and an effective control strategy to lower the cost is urgently needed. PMID:28294998

  15. Psychological well-being of parents and family caregivers of children with hearing impairment in south India: influence of behavioural problems in children and social support.

    PubMed

    van Driessche, Anne; Jotheeswaran, A T; Murthy, G V S; Pilot, Eva; Sagar, Jayanthi; Pant, Hira; Singh, Vivek; Dpk, Babu

    2014-08-01

    Parents of children with hearing impairment are at increased risk of mental health morbidities. We examined the predictive factors associated with caregiver's strain and psychological morbidities in parents and family caregivers of children with hearing impairment. In total, n = 201 parents and family caregivers of children with and without hearing impairment aged 3 to 16 years were recruited. Caregiver's strain and psychological morbidities were measured using the Zarit Burden scale and the World Health Organization's Self-Reporting Questionnaire (SRQ-20). Presence of behavioural problems in children was measured using the Strengths and Difficulties Questionnaire. After adjustment, low educational attainment and domestic violence were found to be associated with caregiving strain, whereas dissatisfaction with social support from family, behavioural problems in children, and domestic violence strongly predicted psychological morbidities. Addressing the mental healthcare needs of parents may help in downsizing the impact of psychological morbidities on the well-being of children with hearing impairment.

  16. Burnout and Psychiatric Distress in Local Caregivers Two Years After the 2011 Great East Japan Earthquake and Fukushima Nuclear Radiation Disaster.

    PubMed

    Fujitani, Kenji; Carroll, Matt; Yanagisawa, Robert; Katz, Craig

    2016-01-01

    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.

  17. Worldwide burden of colorectal cancer: a review.

    PubMed

    Favoriti, Pasqualino; Carbone, Gabriele; Greco, Marco; Pirozzi, Felice; Pirozzi, Raffaele Emmanuele Maria; Corcione, Francesco

    2016-03-01

    Colorectal cancer is a major public health problem, being the third most commonly diagnosed cancer and the fourth cause of cancer death worldwide. There is wide variation over time among the different geographic areas due to variable exposure to risk factors, introduction and uptake of screening as well as access to appropriate treatment services. Indeed, a large proportion of the disparities may be attributed to socioeconomic status. Although colorectal cancer continues to be a disease of the developed world, incidence rates have been rising in developing countries. Moreover, the global burden is expected to further increase due to the growth and aging of the population and because of the adoption of westernized behaviors and lifestyle. Colorectal cancer screening has been proven to greatly reduce mortality rates that have declined in many longstanding as well as newly economically developed countries. Statistics on colorectal cancer occurrence are essential to develop targeted strategies that could alleviate the burden of the disease. The aim of this paper is to provide a review of incidence, mortality and survival rates for colorectal cancer as well as their geographic variations and temporal trends.

  18. Autonomous caregiver following robotic wheelchair

    NASA Astrophysics Data System (ADS)

    Ratnam, E. Venkata; Sivaramalingam, Sethurajan; Vignesh, A. Sri; Vasanth, Elanthendral; Joans, S. Mary

    2011-12-01

    In the last decade, a variety of robotic/intelligent wheelchairs have been proposed to meet the need in aging society. Their main research topics are autonomous functions such as moving toward some goals while avoiding obstacles, or user-friendly interfaces. Although it is desirable for wheelchair users to go out alone, caregivers often accompany them. Therefore we have to consider not only autonomous functions and user interfaces but also how to reduce caregivers' load and support their activities in a communication aspect. From this point of view, we have proposed a robotic wheelchair moving with a caregiver side by side based on the MATLAB process. In this project we discussing about robotic wheel chair to follow a caregiver by using a microcontroller, Ultrasonic sensor, keypad, Motor drivers to operate robot. Using camera interfaced with the DM6437 (Davinci Code Processor) image is captured. The captured image are then processed by using image processing technique, the processed image are then converted into voltage levels through MAX 232 level converter and given it to the microcontroller unit serially and ultrasonic sensor to detect the obstacle in front of robot. In this robot we have mode selection switch Automatic and Manual control of robot, we use ultrasonic sensor in automatic mode to find obstacle, in Manual mode to use the keypad to operate wheel chair. In the microcontroller unit, c language coding is predefined, according to this coding the robot which connected to it was controlled. Robot which has several motors is activated by using the motor drivers. Motor drivers are nothing but a switch which ON/OFF the motor according to the control given by the microcontroller unit.

  19. Global burden of COPD.

    PubMed

    López-Campos, José Luis; Tan, Wan; Soriano, Joan B

    2016-01-01

    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.

  20. Quality of life in Alzheimer disease: a comparison of patients' and caregivers' points of view.

    PubMed

    Zucchella, Chiara; Bartolo, Michelangelo; Bernini, Sara; Picascia, Marta; Sinforiani, Elena

    2015-01-01

    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.

  1. Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China.

    PubMed

    Cui, J; Song, L J; Zhou, L J; Meng, H; Zhao, J J

    2014-07-01

    It is important to understand the unmet needs of family caregivers of advanced cancer patients for developing and refining services to address the identified gaps in cancer care. To explore their needs in Chinese mainland and the possible factors associated with their needs, a self-developed questionnaire was used to survey a sample of 649 participants in 15 hospitals of Shanghai. The data were analysed using descriptive statistics, factor analysis, t-test, one-way ANOVA, and Fishers least significant difference t-test. All statistical analyses were performed using SPSS 13.0. Seven dimensions of needs (maintaining health, support from healthcare professionals, knowledge about the disease and treatment, support on funeral, information on hospice care, psychological support for patients and symptoms control for patients) were extracted from the results by factor analysis. The dimension with the highest score was 'knowledge about the disease and treatment' (4.37), and that with the lowest score named 'support on funeral' (2.85). The results showed that the factors including burden of payment for treatment, former caregiving experience of family caregivers and length of caregiving time were associated with their needs. Cancer services need to consider how to tailor resources and interventions to meet these needs of family caregivers of advanced cancer patients.

  2. [Home care for terminal cancer patients from the family and caregiver perspective].

    PubMed

    Ishikawa, Mitsuko; Ogiwara, Miyoko; Yamaoka, Keita; Matsumoto, Ayumi; Fujimaki, Yoko; Watanabe, Mutsuko; Kushida, Kazuki

    2014-12-01

    The progression of home care provision is associated with an increased burden on the family, as patients tend to progressively become more dependent on medicine. In the present case, a family supported a patient by performing medical activities such as taking blood sugar measurements, administering insulin injections, exchanging fluids, managing each tube, handling medical devices, conducting status observations, and attending to emergency calls. Thus, the family caregiver undertakes duties that were previously performed by a nurse and interacts with the various professionals who visit the patient's home daily. Therefore, the caregiver undergoes a considerable amount of stress. Family caregivers with no medical knowledge or nursing experience require plenty of support, in order to fulfill a patient's requirements. The first step is the establishment of trust between the medical professionals and the caregiver. In the present case, because the trust had been established, interprofessional collaboration ensured that the patient received support until the end. Thus, we reported on the perspectives of the family and caregiver on home care for terminal cancer patients.

  3. Psychological distress, perceived stigma, and coping among caregivers of patients with schizophrenia

    PubMed Central

    Ong, Hui Chien; Ibrahim, Norhayati; Wahab, Suzaily

    2016-01-01

    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

  4. Emotional memory deficit and its psychophysiological correlate in family caregivers of patients with dementia.

    PubMed

    Palma, Kayla Araújo Ximenes Aguiar; Balardin, Joana Bisol; Vedana, Gustavo; de Lima Argimon, Irani Iracema; Luz, Clarice; Schröder, Nadja; Quevedo, João; Bromberg, Elke

    2011-01-01

    This study examined the cortisol secretion pattern and declarative memory performance of dementia caregivers. An illustrated story paradigm memory task was used to evaluate the effects of emotional arousal on memory and assess the caregivers' cognitive compensation capacity. Younger (n=19) and elderly (n=24) noncaregivers and elderly caregivers (n=14) took part in 2 experiments to elucidate the effects of aging (experiment 1) and chronic stress (experiment 2) on memory performance and cortisol levels. Each group was divided in 2 subgroups: one that was exposed to an emotionally neutral story, and one that was exposed to a similar, but emotionally arousing story. Participants completed a multiple-choice questionnaire in the test session. Salivary cortisol samples were collected at 8:00 AM, 4:00 PM, and 10:00 PM, 1 day after memory testing. Experiment 1 showed that, despite an age-related memory deficit, arousal manipulation produced a similar effect in both age groups. Experiment 2 showed that, in addition to the characteristic memory decline of aging, elderly caregivers did not benefit from emotionally arousing material as their noncaregiver counterparts did. This impairment correlated with elevated nighttime cortisol levels, indicating a potential worsening impact of caregiver burden on age-related cognitive decline.

  5. A pilot study of the effects of meditation on regional brain metabolism in distressed dementia caregivers

    PubMed Central

    Pomykala, Kelsey L; Silverman, Daniel HS; Geist, Cheri L; Voege, Patricia; Siddarth, Prabha; Nazarian, Nora; St Cyr, Natalie M; Khalsa, Dharma S; Lavretsky, Helen

    2013-01-01

    Aims Caregiver distress can affect mood and cognition. Meditation can be used to reduce stress. This pilot study explored whether yogic meditation could change regional cerebral metabolism in distressed caregivers. Methods Nine dementia caregivers were randomized to undergo meditation training compared with relaxation for 12 min per day for 8 weeks. Caregivers received neuropsychiatric assessments and brain FDG-PET scans at baseline and postintervention. Results The groups did not differ on measures of mood, mental and physical health, and burden at baseline and follow-up. When comparing the regional cerebral metabolism between groups, significant differences over time were found in the bilateral cerebellum (p < 0.0005), right inferior lateral anterior temporal (p < 0.0005), right inferior frontal (p = 0.001), left superior frontal (p = 0.001), left associative visual (p = 0.002) and right posterior cingulate (p = 0.002) cortices. Conclusion Meditation practice in distressed caregivers resulted in different patterns of regional cerebral metabolism from relaxation. These pilot results should be replicated in a larger study. PMID:23378856

  6. Conflict, Emotion, and Personal Strain among Family Caregivers.

    ERIC Educational Resources Information Center

    Sheehan, Nancy W.; Nuttall, Paul

    1988-01-01

    Examined influence of interpersonal conflict, affection, and distress concerning dependency and caregiving satisfactions in predicting caregiver strain and negative emotion in 98 family caregivers. Found that interpersonal conflict between elderly carereceiver and caregiver predicted greatest amount of variance in both caregiver strain and…

  7. Registered Nurses’ Perceptions about the Situation of Family Caregivers to Patients with Heart Failure - A Focus Group Interview Study

    PubMed Central

    2016-01-01

    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

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

    ERIC Educational Resources Information Center

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

    2007-01-01

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

  9. Occupational segregation, gender essentialism and male primacy as major barriers to equity in HIV/AIDS caregiving: Findings from Lesotho

    PubMed Central

    2011-01-01

    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

  10. Psychometric Properties of the Family Inventory of Resources for Management in a Sample of Iranian Family Caregivers of Cancer Patients

    PubMed Central

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

    2016-01-01

    Objective. The aim of this study was to investigate the psychometric properties of the Family Inventory of Resources for Management (FIRM) in a sample of family caregivers of cancer patients. Methods. In this methodological study, construct validity of the FIRM was evaluated by known groups and convergent validity in a convenience sample of family caregivers of cancer patients (n = 104) referred to the outpatient oncology wards of five educational hospitals in Tehran from January to April 2016. Reliability was determined by assessing the internal consistency and stability of the instrument. Results. The known-groups findings showed that there is a significant difference between the scores of the FIRM in family caregivers with different levels of caregiver burden (p < 0.001). Also, the results of convergent validity showed that there is a moderate negative correlation (r = −0.50; p < 0.001) between the total scores of the FIRM and the scores of the caregiver burden inventory (CBI). The FIRM showed a good internal consistency (α = 0.85) and a good stability of the test-retest reliability result. Conclusions. There is a sound psychometric basis for the use of the Persian translation of the FIRM for family studies in the Iranian population. PMID:28127470

  11. Narratives of family caregiving: four story types.

    PubMed

    Ayres, L

    2000-10-01

    Researchers across disciplines have recognized considerable individual variation among caregivers in their response to the experiences of caregiving. One explanation for individual variation is that caregivers make different meanings from caregiving even under externally similar circumstances. This paper describes findings from a study that combined two qualitative strategies, across-case, thematic analysis and within-case, narrative analysis, to investigate meaning in accounts of family caregiving. Themes identified in the across-case analysis were interpreted in the context of patterns identified in the narrative analysis, as well as in the overall framework of caregivers' process of making meaning. Caregivers in this study told four types of stories: stories of ideal lives, stories of ordinary lives, stories of compromised lives, and ambiguous stories. Characteristics of each story type are described, and an example of an ambiguous story is also included as an illustration of the method. Findings suggest a new approach to understanding family caregiving that incorporates the diverse meanings caregivers make of their often similar experiences.

  12. Caring for Caregivers: Challenging the Assumptions.

    PubMed

    Williams, A Paul; Peckham, Allie; Kuluski, Kerry; Lum, Janet; Warrick, Natalie; Spalding, Karen; Tam, Tommy; Bruce-Barrett, Cindy; Grasic, Marta; Im, Jennifer

    2015-01-01

    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.

  13. Caregiving Styles: A Cognitive and Behavioral Typology Associated with Dementia Family Caregiving

    ERIC Educational Resources Information Center

    Corcoran, Mary A.

    2011-01-01

    Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted.…

  14. Parent-Caregiver Relationships among Beginning Caregivers in Canada: A Quantitative Study

    ERIC Educational Resources Information Center

    Cantin, Gilles; Plante, Isabelle; Coutu, Sylvain; Brunson, Liesette

    2012-01-01

    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…

  15. Neuroticism and Longitudinal Change in Caregiver Depression: Impact of a Spouse-Caregiver Intervention Program

    ERIC Educational Resources Information Center

    Jang, Yuri; Clay, Olivio J.; Roth, David L.; Haley, William E.; Mittelman, Mary S.

    2004-01-01

    Purpose: We examined the impact of caregiver neuroticism on longitudinal change in depression among spouse-caregivers of individuals with Alzheimer's disease receiving either enhanced psychosocial treatment or usual care. We were interested in whether high levels of caregiver neuroticism would lead to a diminished response to the enhanced…

  16. End-of-Life Caregiver's Perspectives on Their Role: Generative Caregiving

    ERIC Educational Resources Information Center

    Phillips, Linda R.; Reed, Pamela G.

    2010-01-01

    Purpose: To describe caregivers' constructions of their caregiving role in providing care to elders they knew were dying from life-limiting illnesses. Design and Methods: Study involved in-depth interviews with 27 family caregivers. Data were analyzed using constant comparative analysis. Results: Four categories were identified: centering life on…

  17. Cortisol Levels of Caregivers in Child Care Centers as Related to the Quality of their Caregiving

    ERIC Educational Resources Information Center

    de Schipper, Elles J.; Riksen-Walraven, J. Marianne; Geurts, Sabine A. E.; de Weerth, Carolina

    2009-01-01

    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…

  18. Mental Trauma Experienced by Caregivers of patients with Diffuse Axonal Injury or Severe Traumatic Brain Injury

    PubMed Central

    Syed Hassan, Syed Tajuddin; Jamaludin, Husna; Abd Raman, Rosna; Mohd Riji, Haliza; Wan Fei, Khaw

    2013-01-01

    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

  19. The Burden of Mental Disorders

    PubMed Central

    Eaton, William W.; Martins, Silvia S.; Nestadt, Gerald; Bienvenu, O. Joseph; Clarke, Diana; Alexandre, Pierre

    2009-01-01

    In the last decade, there has been an increase in interest in the burden of chronic and disabling health conditions that are not necessarily fatal, such as the mental disorders. This review systematically summarizes data on the burden associated with 11 major mental disorders of adults. The measures of burden include estimates of prevalence, mortality associated with the disorders, disabilities and impairments related to the disorders, and costs. This review expands the range of mental disorders considered in a report on the global burden of disease, updates the literature, presents information on the range and depth of sources of information on burden, and adds estimates of costs. The purpose is to provide an accessible guide to the burden of mental disorders, especially for researchers and policy makers who may not be familiar with this subfield of epidemiology. PMID:18806255

  20. Family Caregivers in Cancer (PDQ®)—Patient Version

    Cancer.gov

    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.

  1. Approaches to capturing the financial cost of family care-giving within a palliative care context: a systematic review.

    PubMed

    Gardiner, Clare; Brereton, Louise; Frey, Rosemary; Wilkinson-Meyers, Laura; Gott, Merryn

    2016-09-01

    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

  2. Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review.

    PubMed

    Nicholas Dionne-Odom, J; Hooker, Stephanie A; Bekelman, David; Ejem, Deborah; McGhan, Gwen; Kitko, Lisa; Strömberg, Anna; Wells, Rachel; Astin, Meka; Metin, Zehra Gok; Mancarella, Gisella; Pamboukian, Salpy V; Evangelista, Lorraine; Buck, Harleah G; Bakitas, Marie A

    2017-02-04

    Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms "heart failure" AND "caregiver." Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients' unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

  3. From burden to spritual growth: Korean students' experience in a spiritual care practicum.

    PubMed

    So, Woi Sook; Shin, Hye Sook

    2011-01-01

    Little is known about how students learn spiritual caregiving. A phenomenological study was conducted to examine the experience of Korean nursing students in a spiritual care practicum. Interviews with 12 students were analyzed and organized into 40 themes, 17 theme clusters, and five categories describing their experience in the practicum. Students initially experienced burdens and helplessness,followed by improvement of coping skills, self-reflection, and spiritual growth.

  4. [Dependent seniors: families and caregivers].

    PubMed

    Karsch, Ursula M

    2003-01-01

    This article focuses on health care for dependent seniors in relation to chronic illnesses. Expectations about family support for the dependent elderly are related to the role of family caregivers, but care requires support from the public and private sectors. Governments throughout the developed countries are examining their role in the provision of social welfare programs, especially in the public health sector. To recommend home care and family assistance, the context of changing family structures, the type of care needed, and professional follow-up must be taken into account.

  5. [A "I would like to give him my life": results of a psychological support intervention to caregivers of patients undergoing neuromotor rehabilitation].

    PubMed

    Moroni, L; Colangelo, M; Gallì, M; Bertolotti, G

    2007-01-01

    A large proportion of patients hospitalised for severe neuromotor disorders are supported during the in-hospital rehabilitation program by family members. To target interventions of psychological support for these caregivers it can be of help to identify the causes of caregiver burden or specific needs. Anxiety and depression are common in caregivers and constitute, together with emotional distress caused by loneliness and reduced social activities, an important part of the caregiving burden. This paper presents results emerging from a clinical intervention of psychological support offered to caregivers of neuromotor patients, mainly post-stroke, who were undergoing a course of in-hospital rehabilitation. A psychometric assessment was carried out on a sample of 50 caregivers, spouses or children, at the beginning and end of the in-hospital rehabilitation period. The following questionnaires were used: the Revised Anxiety and Depression Scale (RADS), measuring anxiety and depression, the Caregiver Need Assessment (CNA), assessing needs related to the assisted patient, and the Family Strain Questionnaire (FSQ) for a broader assessment of the problems faced by caregivers. The Functional Independence Measure (FIM) was completed by the medical doctor. A significant reduction was found, between the beginning and end of the rehabilitation period, in the needs related to patient care on the CNA (p < 0.001). Caregiver females, in contrast to males, showed an improvement in mood compared to the beginning of the rehabilitation period (p < 0.05). About half of the sample had, at the beginning, a marked clinical level of anxiety while 22% of caregivers had a marked clinical level of depression. Caregivers who received intense psychological support, i.e. at least one interview with the psychologist per week, showed, in contrast to those who received 3-4 interviews during the entire rehabilitation period, a decline in thoughts of death (p < 0.05) and, in cases where baseline

  6. The Role of the Primary Caregiving Father.

    ERIC Educational Resources Information Center

    Frank, Robert A.

    This dissertation examined primary caregiving father families and how they construct their roles in contrast to primary caregiving mother families. A Self-report survey instrument was constructed. and administered to a sample of 93 married couples in the United States with children under the age of 6. Surveys were coded by couple, analyzed, and…

  7. Hands-On Skills for Caregivers

    MedlinePlus

    ... at the edge of the bed or chair, pull up on the transfer belt, “hugging” your loved one ... National Emergency In this Section Get Involved Sign-up for FCA’s E-newsletters Join an Online Caregiver Group Share Your Caregiver Story Education and Events Calendar April 2017 « » S M T W ...

  8. Young Children's Knowledge of Parental Caregiving Behaviors.

    ERIC Educational Resources Information Center

    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…

  9. Predictors of Depressive Symptoms among Foster Caregivers

    ERIC Educational Resources Information Center

    Cole, Susan A.; Eamon, Mary Keegan

    2007-01-01

    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:…

  10. Early Interventionists' Perspectives on Teaching Caregivers

    ERIC Educational Resources Information Center

    Sawyer, Brook E.; Campbell, Philippa H.

    2012-01-01

    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…

  11. Cognitive and Socioemotional Caregiving in Developing Countries

    ERIC Educational Resources Information Center

    Bornstein, Marc H.; Putnick, Diane L.

    2012-01-01

    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…

  12. A Critique of the Caregiving Literature.

    ERIC Educational Resources Information Center

    Barer, Barbara M.; Johnson, Colleen L.

    1990-01-01

    Reviews caregiving literature, identifying methodological problems: variable definitions of caregiver, lack of specification of needs, overrepresentation of self-selected samples, and absence of attention to total support network. Concludes that future researchers should focus on total support process in later life, rather than on single…

  13. What Knowledge and Skills Do Caregivers Need?

    ERIC Educational Resources Information Center

    Given, Barbara; Sherwood, Paula R.; Given, Charles W.

    2008-01-01

    Patients with chronic illnesses and multiple comorbid conditions have intricate treatment protocols that require caregiver involvement, further complicating this already-difficult care. Because better treatments have extended the life spans of most patients with chronic illnesses, caregiver involvement often is required for several years. Many…

  14. When LVAD Patients Die: The Caregiver's Mourning.

    PubMed

    Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo

    2016-05-01

    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.

  15. Routines. Infant/Toddler Caregiving: A Guide.

    ERIC Educational Resources Information Center

    Gonzalez-Mena, Janet

    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…

  16. Behavioral and Psychosocial Interventions for Family Caregivers

    ERIC Educational Resources Information Center

    Zarit, Steven; Femia, Elia

    2008-01-01

    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…

  17. Caregiving Practice Patterns of Asian, Hispanic, and Non-Hispanic White American Family Caregivers of Older Adults Across Generations.

    PubMed

    Miyawaki, Christina E

    2016-03-01

    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.

  18. Resourcefulness Training for Dementia Caregivers: Establishing Fidelity

    PubMed Central

    Zauszniewski, Jaclene A.; Lekhak, Nirmala; Burant, Christopher J.; Underwood, Patricia W.; Morris, Diana L.

    2016-01-01

    Providing care for an elder with dementia can produce extreme stress that adversely affects caregiver health. Learning to be resourceful, which involves practicing resourcefulness skills using a journal or voice recorder, may reduce caregiver stress. However, before testing the effectiveness of journaling and voice recording as resourcefulness training (RT) practice methods, intervention fidelity should first be established. This pilot trial with 63 women dementia caregivers examined the fidelity of journaling and voice recording and whether allowing a choice between the methods affected RT intervention fidelity. Following RT, Resourcefulness Scale scores were similar for journal and recorder methods but higher for caregivers in the choice versus random condition. Patterns of RT skill use documented in journals or recordings were similar for choice and random conditions and for journal and recorder methods. The results support the implementation fidelity of RT that allows caregivers to choose a method to reinforce their resourcefulness skills. PMID:27338751

  19. Burden sharing or burden shifting Armaments cooperation within NATO

    SciTech Connect

    Smith, R.W.

    1993-01-01

    This study has explored the nature of decision-making under conditions of conflicting political and economic imperatives. The participants want the cooperative program to succeed. They also want to bear the least burden necessary for success by shifting it to others. The concepts of burden sharing and burden shifting have been explored in the context of armaments cooperation through analysis of six armaments cooperation cases. The cases ranged from the NATO Sea Sparrow Missile System to the 155MM Autonomous Precision Guided Missile. Ideal models of burden sharing and burden shifting were developed to aid the analysis. The resultant theoretical framework of armaments cooperation within the NATO alliance has been used to explain success or lack of success in cooperative programs. Each case study addressed the categories of: Political Environment, Program Inception, Management Structure, and Results. Comparative analysis between programs was facilitated by using similar criteria for success or failure throughout. Each of the hypotheses making up the ideal models for burden sharing and burden shifting were examined considering the individual cases. An assessment of validity was made. Comparative analysis of selected case pairs facilitated isolation of factors that may have contributed to different results. These assessments were combined and formed the basis for the final conclusions on each hypothesis and their respective importance. This study adds to the theoretical understanding of alliance politics by examining in depth these concepts. It also supports future efforts to understand alliance politics by providing a framework for examining and testing deductively derived propositions against experience.

  20. [Intervention and psychological care for the family caregivers of cancer patients].

    PubMed

    Onishi, Hideki

    2009-01-01

    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

  1. Harnessing Motivation to Alleviate Neglect

    PubMed Central

    Russell, Charlotte; Li, Korina; Malhotra, Paresh A.

    2013-01-01

    The syndrome of spatial neglect results from the combination of a number of deficits in attention, with patients demonstrating both spatially lateralized and non-lateralized impairments. Previous reports have hinted that there may be a motivational component to neglect and that modulating this might alleviate some of the debilitating symptoms. Additionally, recent work on the effects of reward on attention in healthy participants has revealed improvements across a number of paradigms. As the primary deficit in neglect has been associated with attention, this evidence for reward’s effects is potentially important. However, until very recently there have been few empirical studies addressing this potential therapeutic avenue. Here we review the growing body of evidence that attentional impairments in neglect can be reduced by motivation, for example in the form of preferred music or anticipated monetary reward, and discuss the implications of this for treatments for these patients. Crucially these effects of positive motivation are not observed in all patients with neglect, suggesting that the consequences of motivation may relate to individual lesion anatomy. Given the key role of dopaminergic systems in motivational processes, we suggest that motivational stimulation might act as a surrogate for dopaminergic stimulation. In addition, we consider the relationship between clinical post stroke apathy and lack of response to motivation. PMID:23761744

  2. Harnessing motivation to alleviate neglect.

    PubMed

    Russell, Charlotte; Li, Korina; Malhotra, Paresh A

    2013-01-01

    The syndrome of spatial neglect results from the combination of a number of deficits in attention, with patients demonstrating both spatially lateralized and non-lateralized impairments. Previous reports have hinted that there may be a motivational component to neglect and that modulating this might alleviate some of the debilitating symptoms. Additionally, recent work on the effects of reward on attention in healthy participants has revealed improvements across a number of paradigms. As the primary deficit in neglect has been associated with attention, this evidence for reward's effects is potentially important. However, until very recently there have been few empirical studies addressing this potential therapeutic avenue. Here we review the growing body of evidence that attentional impairments in neglect can be reduced by motivation, for example in the form of preferred music or anticipated monetary reward, and discuss the implications of this for treatments for these patients. Crucially these effects of positive motivation are not observed in all patients with neglect, suggesting that the consequences of motivation may relate to individual lesion anatomy. Given the key role of dopaminergic systems in motivational processes, we suggest that motivational stimulation might act as a surrogate for dopaminergic stimulation. In addition, we consider the relationship between clinical post stroke apathy and lack of response to motivation.

  3. Can Earth Sciences Help Alleviate Global Poverty?

    NASA Astrophysics Data System (ADS)

    Mutter, J. C.

    2004-12-01

    essential and could hold the key to making gains toward alleviating the burden of global poverty.

  4. Hypertension burden in Luxembourg

    PubMed Central

    Ruiz-Castell, Maria; Kandala, Ngianga-Bakwin; Kuemmerle, Andrea; Schritz, Anna; Barré, Jessica; Delagardelle, Charles; Krippler, Serge; Schmit, Jean-Claude; Stranges, Saverio

    2016-01-01

    Abstract Hypertension is a modifiable risk factor for cardiovascular disease, but it remains the main cause of death in Luxembourg. We aimed to estimate the current prevalence of hypertension, associated risk factors, and its geographic variation in Luxembourg. Cross-sectional, population-based data on 1497 randomly selected Luxembourg residents aged 25 to 64 years were collected as part of the European Health Examination Survey from 2013 to 2015. Hypertension was defined as systolic/diastolic blood pressure ≥140/90 mm Hg, self-report of a physician diagnosis or on antihypertensive medication. Standard and Bayesian regressions were used to examine associations between hypertension and covariates, and also geographic distribution of hypertension across the country. Nearly 31% of Luxembourg residents were hypertensive, and over 70% of those were either unaware of their condition or not adequately controlled. The likelihood of hypertension was lower in men more physically active (odds ratio [95% credible region] 0.6 [0.4, 0.9]) and consuming alcohol daily (0.3 [0.1, 0.8]), and higher in men with a poor health perception (1.6 [1.0, 2.7]) and in women experiencing depressive symptoms (1.8 [1.3, 2.7]). There were geographic variations in hypertension prevalence across cantons and municipalities. The highest odds ratio was observed in the most industrialized region (South-West) (1.2 [0.9, 1.6]) with a positive effect at 90% credible region. In Luxembourg, the vast majority of people with hypertension are either unaware of their condition or not adequately controlled, which constitutes a major, neglected public health challenge. There are geographic variations in hypertension prevalence in Luxembourg, hence the role of individual and regional risk factors along with public health initiatives to reduce disease burden should be considered. PMID:27603374

  5. Caregiving

    MedlinePlus

    ... can help make life better for people with Parkinson's General Gift Tribute Gift Moving Day ® Team Hope ... can help make life better for people with Parkinson's General Gift Tribute Gift Moving Day ® Team Hope ...

  6. Caregivers

    MedlinePlus

    ... Facts Financial Resources: Healthcare Family Life and Relationships Exercise and Nutrition Mental Health and Wellbeing Personal Stories Finding the Right Doctor Talking to Others About Lupus Financial Resources: Non-Healthcare My Child Has Lupus ...

  7. A Randomized Controlled Trial of Clinician-Supported Problem-Solving Bibliotherapy for Family Caregivers of People With First-Episode Psychosis.

    PubMed

    Chien, Wai Tong; Thompson, David R; Lubman, Dan I; McCann, Terence V

    2016-11-01

    Family interventions for first-episode psychosis (FEP) are an integral component of treatment, with positive effects mainly on patients' mental state and relapse rate. However, comparatively little attention has been paid to the effects of family interventions on caregivers' stress coping and well-being, especially in non-Western countries. We aimed to test the effects of a 5-month clinician-supported problem-solving bibliotherapy (CSPSB) for Chinese family caregivers of people with FEP in improving family burden and carers' problem-solving and caregiving experience, and in reducing psychotic symptoms and duration of re-hospitalizations, compared with those only received usual outpatient family support (UOFS). A randomized controlled trial was conducted across 2 early psychosis clinics in Hong Kong, where there might be inadequate usual family support services for FEP patients. A total of 116 caregivers were randomly selected, and after baseline measurement, randomly assigned to the CSPSB or UOFS. They were also assessed at 1-week and 6- and 12-month post-intervention. Intention-to-treat analyses were applied and indicated that the CSPSB group reported significantly greater improvements in family burden and caregiving experience, and reductions in severity of psychotic symptoms and duration of re-hospitalizations, than the UOFS group at 6- and 12-month follow-up. CSPSB produces moderate long-term benefits to caregivers and FEP patients, and is a low-cost adjunct to UOFS.

  8. Determinants of Heart Failure Self-Care Maintenance and Management in Patients and Caregivers: A Dyadic Analysis.

    PubMed

    Bidwell, Julie T; Vellone, Ercole; Lyons, Karen S; D'Agostino, Fabio; Riegel, Barbara; Juárez-Vela, Raúl; Hiatt, Shirin O; Alvaro, Rosaria; Lee, Christopher S

    2015-10-01

    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.

  9. "I wouldn't look at it as stress": conceptualizations of caregiver stress among low-income families of children with asthma.

    PubMed

    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

    2013-02-01

    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.

  10. Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal

    PubMed Central

    Marinova-Schmidt, Velislava; Setzer, Manuela; Kondylakis, Haridimos; Griebel, Lena; Sedlmayr, Martin; Graessel, Elmar; Maler, Juan Manuel; Kirn, Stefan; Kolominsky-Rabas, Peter L

    2016-01-01

    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

  11. [Aging by the perspective of elderly caregivers].

    PubMed

    Garbin, Cléa Adas Saliba; Sumida, Doris Hissako; Moimaz, Suzely Adas Saliba; do Prado, Rosana Leal; da Silva, Milene Moreira

    2010-09-01

    This study reports elderly caregivers' perception in charge of giving assistance to three benefiting institutions in elderly care, in the city of Araçatuba, São Paulo, Brazil. Questions were approached regarding aging, caregivers' personal motivation in the search of working with this sector of population, relationship with elderly, most common difficulties found during work and caregivers' satisfaction. An interview was done with caregivers and the collected verbal material was analyzed through the Collective Subject Discursive Technique. It was possible to realize through the reports the emotional involvement of caregivers with their work as well as the emotional and physical overload which they are exposed to. Reports related to aging could also be collected as well as social questions which motivated caregivers to search for this kind of job. The several eyes of caregivers lead us to search for new strategies of theoretical capability and psychological support for this group, thinking of their well-being along with the elderly well-being.

  12. The Role of Nurses in Coping Process of Family Caregivers of Vegetative Patients: A Qualitative Study

    PubMed Central

    Imanigoghary, Zahra; Peyrovi, Hamid; Nouhi, Esmat; Kazemi, Majid

    2017-01-01

    ABSTRACT Background: Vegetative state (VS) occurs through return of the brain stem after coma state. After hospital discharge, responsibility of caring for VS patients is transferred to their families, which causes a high burden on them. Nurses have an important role in helping the family caregivers to meet their needs and cope with difficulties. To explore the role of nurses during coping process of family caregivers of VS patients. Methods: This study is a part of a larger qualitative study which was performed in Kerman province, Iran during 2014- 2015. Purposive and theoretical sampling was used. 14 caregivers participated in the study. Data were gathered using face-to-face in-depth interviews and managed by MAXQDA 10 software. Analysis was done through constant Comparative Method. Results: Three themes of “nurse as a pursuer teacher”, “nurse as a compassionate caregiver”, and “nurse as a supporter” were derived from analysis that represent various roles of a nurse in the coping process of family caregivers of vegetative patients during the care process. Conclusion: Nurses can play an effective role in improving the caregivers’ well-being by considering the importance of training at discharge time and during home care, helping families in providing care and support them during care process. PMID:28097180

  13. Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments.

    PubMed

    Hudson, Peter L; Hayman-White, Karla

    2006-03-01

    Researchers and clinicians have experienced substantial difficulties locating measures that are suitable for use within palliative care settings. This article details the psychometric properties of nine instruments designed to assess the following psychosocial characteristics of family caregivers: competence, mastery, self-efficacy, burden, optimism, preparedness, social support, rewards, and mutuality. Results are based on the responses of 106 primary family caregivers caring for relatives dying of cancer. Principal components extraction with varimax rotation was used to explore the underlying structure of each measure. Following the exclusion of complex variables, suggested components for most measures comprised relatively homogenous items, which were good to excellent measures of each component. Some components comprised only two items; however, Cronbach's alphas typically indicated moderate to high levels of internal consistency. Overall, the results of this study suggest that most of the measures analyzed, excepting the mastery and mutuality scales, can be recommended to examine the family caregiver experience and test supportive interventions.

  14. Web-Based Psychoeducation Program for Caregivers of First-Episode of Psychosis: An Experience of Chinese Population in Hong Kong

    PubMed Central

    Chan, Sherry K. W.; Tse, Samson; Sit, Harrison Long Tin; Hui, Christy L. M.; Lee, Edwin H. M.; Chang, Wing C.; Chen, Eric Y. H.

    2016-01-01

    Caregivers of patients with first-episode psychosis are often with little knowledge about the illness and experience more burden of care. Psychoeducation to caregivers has shown to be effective in improving outcomes of patients and possibly reduce stress of the caregivers. This has been recommended as one of the key psychosocial interventions for specific early intervention for psychosis service. However, the accessibility of the service, high case load of the health care professionals and self-stigma of caregivers are often the barriers of implementation of these programs in the real world. Incorporating the convenience of information access via internet and the concept of self-management approach, an interactive internet-based self-help psychoeducation program (iPEP) (www.ipep.hk) for the caregivers of patients with psychosis was established targeting the caregivers of patients with psychosis at early stage in Hong Kong. It provides a comprehensive online resource center in both written and video format on knowledge about psychosis, skills of care, and information of local resources. It also has a forum facilitate information exchange between healthcare professionals and the caregivers, allowing for self-management. Over 800 caregivers have joined the program as members. The evaluation of the subset of the members/users of the iPEP suggested that the iPEP program has been well received and appreciated by the caregivers of patients with first episode psychosis locally. It can potentially serve as a platform for future development of specific manual-based psychoeducation program for caregivers targeting at the needs of different groups. PMID:28082935

  15. A Pilot Evaluation of the Family Caregiver Support Program

    ERIC Educational Resources Information Center

    Chen, Ya-Mei; Hedrick, Susan C.; Young, Heather M.

    2010-01-01

    The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative…

  16. The Stress Process of Family Caregiving in Institutional Settings.

    ERIC Educational Resources Information Center

    Whitlatch, Carol J.; Schur, Dorothy; Noelker, Linda S.; Ejaz, Farida K.; Looman, Wendy J.

    2001-01-01

    Adapts Stress Process Model (SPM) of family caregiving to examine predictors of depression in a sample of caregivers (N=133) with demented relatives residing in suburban skilled nursing facilities. Results suggest that caregiver depression is closely linked to how well resident and caregiver adjust to the nursing home environment. (BF)

  17. Typical and Atypical Dementia Family Caregivers: Systematic and Objective Comparisons

    ERIC Educational Resources Information Center

    Nichols, Linda O.; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J.; Zuber, Jeffrey

    2011-01-01

    This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1,476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II)…

  18. The Impact of Caregiving on Caregivers' Medication Adherence and Appointment Keeping.

    PubMed

    Wang, XiaoRong; Robinson, Karen M; Hardin, Heather K

    2015-12-01

    The purpose of this study was to examine the relationships between care demands and caregivers' medication adherence and health appointment keeping. A cross-sectional correlational design was used to survey a convenience sample of 45 informal caregivers of persons with dementia. Pearson product-moment correlations and hierarchical multiple regressions were used to examine the relationships among study variables. Nearly one third of caregivers reported frequently or occasionally missing medication doses and nearly a half reported not being able to fully keep appointments with health care providers. Female gender, care duration, and care-recipient activities of daily living were significant predictors for medication adherence and appointment keeping. Caregivers' education and weekly caregiving hours contributed significantly to their medication adherence. Interventions are needed to help caregivers keep health appointments and adhere to their medications.

  19. Older patients’ perceived burdens of their health problems: a cross-sectional analysis in 74 German general practices

    PubMed Central

    Junius-Walker, Ulrike; Wiese, Birgitt; Klaaßen-Mielke, Renate; Theile, Gudrun; Müller, Christiane Annette; Hummers-Pradier, Eva

    2015-01-01

    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

  20. HIV / AIDS: An Unequal Burden

    MedlinePlus

    ... Navigation Bar Home Current Issue Past Issues HIV / AIDS HIV / AIDS: An Unequal Burden Past Issues / Summer 2009 Table ... Victoria Cargill talks to students about HIV and AIDS at the opening of a National Library of ...

  1. Mental health disorders among caregivers of preschool children in the Asenze study in KwaZulu-Natal, South Africa.

    PubMed

    Chhagan, Meera K; Mellins, Claude A; Kauchali, Shuaib; Craib, Murray H; Taylor, Myra; Kvalsvig, Jane D; Davidson, Leslie L

    2014-01-01

    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. 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. Many caregivers (449/1,434; 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. 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.

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

    ERIC Educational Resources Information Center

    Kim, Jung-Hyun; Knight, Bob G.

    2008-01-01

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

  3. The FDP Faculty Burden Survey

    PubMed Central

    Rockwell, Sara

    2010-01-01

    To better understand the administrative burdens placed on faculty who perform research, the Faculty Standing Committee of the Federal Demonstration Partnership (FDP) invited 23,325 full-time faculty members who were Principal Investigators (PI) or Co-Principal Investigators (Co-PI) on active federally funded research grants to participate in a web-based survey that contained questions on the nature, size, and impact of the administrative tasks associated with their research projects. The responses of the 6,081 faculty respondents show that the administrative burden on faculty is very significant: 42% of the time spent by an average PI on a federally funded research project was reported to be expended on administrative tasks related to that project rather than on research. This administrative burden does not stem from one or a few exceptionally onerous tasks, but instead reflects the cumulative effect of the many administrative burdens imposed by different funding agencies, different offices within agencies, auditing and accrediting agencies, and academic institutions. The lack of institutional assistance contributes to the administrative workload of the faculty. Many burdens are remarkably constant across funding agencies, universities, disciplines, and faculty subgroups. The report documents the negative effect reported for these administrative burdens on the productivity of researchers, the careers of young faculty members, and the training of students. PMID:20563268

  4. [Factors associated with satisfaction with life among elderly caregivers and non-caregivers].

    PubMed

    Tomomitsu, Monica Regina Scandiuzzi Valente; Perracini, Monica Rodrigues; Neri, Anita Liberalesso

    2014-08-01

    This article seeks to investigate associations between satisfaction with life and sociodemographic variables, health conditions, functionality, social involvement and social support among elderly caregivers and non-caregivers, as well as between satisfaction and the intensity of stress in the caregiver group. A sample of 338 caregivers was selected according to two items of the Brazilian version of the Elders Life Stress Inventory. A comparison-group of elderly non-caregivers was selected at random, with a similar gender, age and income profile. Data were derived from self-reported questionnaires and scales. Elderly caregivers with low levels of satisfaction and high levels of stress revealed more symptoms of insomnia, fatigue, diseases and worse IADL performance. Those with greater satisfaction and less stress revealed a good level of social support. Insomnia, depression and fatigue were associated with low satisfaction among caregivers, and with fatigue, depression and low social support among non-caregivers. It was considered relevant that instrumental, psychological and informative support can improve the quality of life and the quality of care provided by elderly caregivers, especially if they are affected by unfavorable health and psychosocial conditions and low satisfaction with life.

  5. Caregiving Styles: A Cognitive and Behavioral Typology Associated With Dementia Family Caregiving

    PubMed Central

    Corcoran, Mary A.

    2011-01-01

    Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer’s disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a “cultural activity,” and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking–action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Methods: Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver–care recipient (CR) dyads was videotaped during typical interactions. Results: Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. Implications: The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver–CR dyads. PMID:21335422

  6. A randomised controlled trial of benefit finding in caregivers: The Building Resources in Caregivers Study Protocol.

    PubMed

    Brand, Charles; O'Connell, Brenda H; Gallagher, Stephen

    2015-07-01

    Caregivers may engage in benefit finding, that is, an increase in perceived positive growth, as a cognitive strategy for coping with stress. The Building Resources in Caregivers study will compare effects of a brief benefit finding writing intervention with a control intervention. Caregivers of people with mental and physical disabilities will be randomised into either a benefit-writing group or a neutral writing group. Caregivers will complete measures relating to themselves and care-recipients (e.g. sociodemographics and illness type) and psychometric measures of benefit finding, distress and quality of life at three time points. Additionally, qualitative commentary on participation experiences will be gathered.

  7. Advice for Loved Ones and Caregivers

    MedlinePlus

    ... changes in your partner's appearance and influence their contribution to household chores. Cognitive and mood changes may ... both the Parkinson's patient and the caregiver. Support groups offer the opportunity to share experiences and information ...

  8. Caregivers' Guide to Medications and Aging

    MedlinePlus

    ... Caregivers for people with Alzheimer’s disease and other memory impairments commonly report problems with getting their relative ... difficulties they have taking medications, including the following: Memory: Difficulty remembering to take medications. The pharmacist can ...

  9. Alzheimer's Caregivers - Multiple Languages: MedlinePlus

    MedlinePlus

    ... Supplements Videos & Tools You Are Here: Home → Multiple Languages → All Health Topics → Alzheimer's Caregivers URL of this page: https://medlineplus.gov/languages/alzheimerscaregivers.html Other topics A-Z A B ...

  10. Selecting a Caregiver Who Supports Breastfeeding

    MedlinePlus

    ... Breastfeeding Crying & Colic Diapers & Clothing Feeding & Nutrition Preemie Sleep Teething & Tooth Care Toddler Preschool Gradeschool Teen Young Adult Healthy Children > Ages & Stages > Baby > Breastfeeding > Selecting A Caregiver Who Supports Breastfeeding ...

  11. Cognitive and Socioemotional Caregiving in Developing Countries

    PubMed Central

    Bornstein, Marc H.; Putnick, Diane L.

    2011-01-01

    Enriching caregiving practices foster the course and outcome of child development. We studied two 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 and engaged in more socioemotional than cognitive activities. More than half of mothers played with their children and took them outside, but only a third or fewer read books and told stories to their children. The GDP of countries related to caregiving after controlling for life expectancy and education. The majority of mothers report that they do not leave their under-5s alone. Policy and intervention recommendations are elaborated. PMID:22277006

  12. Spirituality expressed by caregivers of stroke survivors.

    PubMed

    Pierce, Linda L; Steiner, Victoria; Havens, Heidi; Tormoehlen, Karen

    2008-08-01

    Thirty-six caregivers of stroke survivors who are new to that role participate in a Web-based support and education intervention over the course of a year. The authors use a secondary analysis of a total of 2,148 e-mail messages that these caregivers posted to the intervention's discussion group. Rigorous content analysis is used to analyze the narrative data coded to spirituality (n = 230 e-mails). Four themes emerge and are drawn to Friedemann's (1995) framework of systemic organization: (a) feeling the presence of a greater power, (b) practicing rituals, (c) being one with nature, and (d) interacting with family and friends. Spirituality gives these caregivers hope and sustenance, but it also helps them express themselves more fully during a difficult time of change. The e-mail discussion data presented here highlight the importance of increased awareness of addressing spirituality in nurse-client encounters and designing interventions to support the caregivers.

  13. Caregiving and Sibling Relationships: Challenges and Opportunities

    MedlinePlus

    ... source of sibling friction is the legacy of family dynamics. Invariably, the demands of caregiving bring out old ... find themselves replaying their historical roles in the family, recreating old dynamics of competition and resentment as they vie for ...

  14. Family burden of schizophrenic patients and the welfare system; the case of Cyprus

    PubMed Central

    2013-01-01

    Background The shift from asylum to community care for mental health patients has burdened the providers of primary health care and, more than all, families. As a result, numerous studies [Soc Psychiatry Psychiatr Epidemiol 31:345–348, 1995, J Health Socisl Behav 36:138–150, 1995] have focused on the burden of care experienced by family members living with individuals with severe mental disorders. This kind of provision, also extols a significant cost to the society at large in terms of significant direct and indirect costs. A cost that may be even higher in times of severe socio-economic crisis. Methodology This study, firstly, aims to examine the burden that the family members experience by caring for individuals with schizophrenia and the identification of the parameters, in a micro and macro level, that affect family burden. Secondly, this study aims to investigate whether the welfare state will be fit to help vulnerable groups as the one studied, especially during economic crisis periods when austerity measures are being implemented into welfare systems. For data collection purposes this study employed the Involvement Evaluation Questionnaire [Schizophr Bull 1998, 24(4):609–618]. The sample consisted of caregivers either living in rural or urban areas of the district of Nicosia, the capital of the Republic of Cyprus. These people were attending regular meetings with their allocated Community Psychiatric Nurses (CPN) in Community Mental Health Centres (CMHC). Results Analysis of covariance (ANCOVA) was applied with the tension, the supervision, the worry, and the encouragement entering as dependent factors. In each case, participant’s age, gender, marital status, income, number of people living in the same house with the participant, degree of relationship between the caregiver and the person suffering from severe mental disorder, the age of the relative, and the gender of the relative, were entered as independent factors. Four ANCOVAs were performed

  15. Caregiving intensity and retirement status in Canada.

    PubMed

    Jacobs, Josephine C; Laporte, Audrey; Van Houtven, Courtney H; Coyte, Peter C

    2014-02-01

    A number of OECD countries have implemented policies encouraging longer labour force participation in tandem with policies encouraging informal care provision in the community. To better understand how these policies may affect the available pool of caregivers and labour force participants, we need more evidence about how informal caregiving is related to retirement status and timing. We assessed the association between caregiving intensity and retirement status for individuals aged 55 to 69 using the Canadian 2007 General Social Survey, a cross-sectional survey with 23,404 individuals. We used multinomial logistic regressions to determine whether providing different intensities of informal care (i.e. hours of weekly care) was significantly associated with the likelihood that an individual was fully retired, had retired and returned to work, had never retired and was working part-time or full-time, or was a labour market non-participant. We found that higher intensity caregiving was associated with being fully retired (relative to working full-time) for men and women (relative risk ratios, 2.93 and 2.04, respectively). For women, high intensity caregiving was also associated with working part-time (1.84) and being a labour force non-participant (1.99). Male and female high intensity caregivers were more likely to be retired before age 65. Our results highlight the importance of measuring caregiving intensity and multiple paths to retirement, which are often overlooked in the caregiving and retirement literature. They also indicate that a policy context encouraging both later retirement and more informal care may not be reasonable without flexible work arrangement options.

  16. Family Caregivers and Consumer Health Information Technology.

    PubMed

    Wolff, Jennifer L; Darer, Jonathan D; Larsen, Kevin L

    2016-01-01

    Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.

  17. [Depression and burden on primary caregivers of elderly persons with physical dependence of the UMF 171].

    PubMed

    Navarro-Sandoval, Cristina; Uriostegui-Espíritu, Lizbeth Carlota; Delgado-Quiñones, Edna Gabriela; Sahagún-Cuevas, Minerva Natalia

    2017-01-01

    Introducción: según la ENSANUT del 2012, más de una cuarta parte de los adultos mayores presenta algún grado de discapacidad, precisando de un cuidador primario para realizar las actividades básicas de la vida diaria. El objetivo es determinar la prevalencia de depresión y sobrecarga en cuidadores primarios de pacientes geriátricos con dependencia física. Métodos: estudio transversal descriptivo con muestreo no probabilístico que incluyó a los cuidadores primarios de los pacientes geriátricos con dependencia física. Se aplicó la escala de Barthel para medir el nivel de dependencia física en el paciente geriátrico; y a los cuidadores primarios se les aplicó el cuestionario de Beck para depresión y la escala de Zarit para evaluar el nivel de sobrecarga Resultados: de los 76 cuidadores primarios, el 55.3% se encontraba sin depresión, el 32.9% presentaban depresión leve, y el 11.8% depresión moderada. De acuerdo a la escala de Zarit, el 40.8% tenían ausencia de sobrecarga, el 44.7% presentaban sobrecarga ligera, y el 14.5% sobrecarga intensa. Conclusiones: el papel del cuidador primario supone una tarea estresante, la cual puede interferir en su salud familiar; por lo tanto, nuestra función es brindar atención no solo al paciente geriátrico dependiente, sino también a su cuidador.

  18. Perceptions of Burden in Patients With Late-Stage Cancer and Their Caregivers

    ClinicalTrials.gov

    2015-05-27

    Brain and Central Nervous System Tumors; Chronic Myeloproliferative Disorders; Depression; Leukemia; Lymphoma; Multiple Myeloma and Plasma Cell Neoplasm; Myelodysplastic Syndromes; Myelodysplastic/Myeloproliferative Neoplasms; Psychosocial Effects of Cancer and Its Treatment; Unspecified Adult Solid Tumor, Protocol Specific

  19. The burden of age-related macular degeneration.

    PubMed

    Schmier, Jordana K; Jones, Mechelle L; Halpern, Michael T

    2006-01-01

    As age-related macular degeneration (AMD) becomes more prevalent as a result of longer life expectancy and the number of elderly people worldwide, it will become increasingly important to understand its potential health and economic impact for appropriate healthcare planning. This review identified published literature on costs and resource use associated with AMD. Despite the increasing prevalence of AMD, the worldwide burden of illness is unknown. Several studies of direct medical costs, both those associated with ophthalmic care and those associated with other care, have been conducted and have identified increased medical care associated with AMD. Direct non-medical costs include the cost for vision aids; while these costs may be substantial, they are difficult to quantify as no comprehensive sources track the distribution or use of vision aids. Because AMD is uncommon among people of working age, there is less concern regarding the impact of indirect (workplace) costs among AMD patients. However, indirect costs are incurred by caregivers who leave the workforce early or change their work patterns in order to provide assistance to AMD patients; the magnitude of caregiver-related costs is unknown. The cost effectiveness of some interventions for AMD has been explored. Supplementation with zinc and antioxidants for non-exudative (dry) AMD has been shown to result in an acceptable cost per QALY and is considered cost effective. Studies suggest that laser photocoagulation is cost effective but that photodynamic therapy with verteporfin appears to be cost effective only among patients with good visual acuity at baseline or when models extend longer than 5 years. Further research is needed to integrate the information on various components of AMD-related costs into a comprehensive burden of illness estimate and to evaluate basic utility assumptions in existing models.

  20. Factors Influencing Quality of Life in Caregivers of People with Parkinson's Disease and Implications for Clinical Guidelines

    PubMed Central

    Morley, D.; Dummett, S.; Peters, M.; Kelly, L.; Hewitson, P.; Dawson, J.; Fitzpatrick, R.; Jenkinson, C.

    2012-01-01

    The quality of life (QoL) of informal caregivers can be adversely affected by a number of factors. This issue, however, has not been well explored for carers of people with Parkinson's (PwP), with research largely restricted to the assessment of caregiver burden and caregiver strain. This study aims to determine the main influences on carer QoL in this population and consider results in the context of current clinical guidelines for the management of Parkinson's disease (PD). Carers completed the newly validated PDQ-Carer, and PwP completed the PDQ-39. The sample comprised 238 carers (mean age 68.20 years) and 238 PwP (mean age 71.64). Results suggest multiple influences on caregiver QoL. These include carer age, gender, health status, and duration of the caregiving role. PwP levels of mobility and cognitive impairment are also significant influences on carer QoL. Not only should practitioners and service providers be particularly aware of the heightened impact of PD on carers over time and as PwP symptoms deteriorate, but this should also be reflected in clinical guidelines for the management of PD. PMID:23316414

  1. Factors influencing quality of life in caregivers of people with Parkinson's disease and implications for clinical guidelines.

    PubMed

    Morley, D; Dummett, S; Peters, M; Kelly, L; Hewitson, P; Dawson, J; Fitzpatrick, R; Jenkinson, C

    2012-01-01

    The quality of life (QoL) of informal caregivers can be adversely affected by a number of factors. This issue, however, has not been well explored for carers of people with Parkinson's (PwP), with research largely restricted to the assessment of caregiver burden and caregiver strain. This study aims to determine the main influences on carer QoL in this population and consider results in the context of current clinical guidelines for the management of Parkinson's disease (PD). Carers completed the newly validated PDQ-Carer, and PwP completed the PDQ-39. The sample comprised 238 carers (mean age 68.20 years) and 238 PwP (mean age 71.64). Results suggest multiple influences on caregiver QoL. These include carer age, gender, health status, and duration of the caregiving role. PwP levels of mobility and cognitive impairment are also significant influences on carer QoL. Not only should practitioners and service providers be particularly aware of the heightened impact of PD on carers over time and as PwP symptoms deteriorate, but this should also be reflected in clinical guidelines for the management of PD.

  2. Barriers to Infant and Child-feeding Practices: A Qualitative Study of Primary Caregivers in Rural Uganda

    PubMed Central

    Nankumbi, Joyce

    2015-01-01

    ABSTRACT The purpose of this study was to explore the barriers to the use of appropriate infant and young child-feeding practices by primary caregivers living in a rural Ugandan district. A community-based qualitative design and focus group discussions were used for collecting data from primary caregivers of children aged 0 to 24 month(s). On an average, each of the four focus group discussions had 11 participants. The focus group discussions were conducted using a structured interview guide and were tape-recorded. The recorded data were later transcribed and analyzed using qualitative thematic analysis techniques. All the participants were females, and the majority had low levels of education and at least one child in the age-group of 0-24 month(s) in their household. The findings show that the main barriers to the use of appropriate infant and young child-feeding practices fall under four themes: caregiver's knowledge about breastfeeding, caregiver's knowledge about complimentary feeding, influence of culture custodians on the caregivers, and patterns and burden of other responsibilities the caregivers have in the household. The four categories of barriers imply that there are various missed opportunities to implement hospital and community-based interventions to improve infant and young child-feeding practices, which is one way of preventing malnutrition. Therefore, in rural areas of Uganda, the major factors responsible for the high prevalence of malnutrition among infants and children are still those related to knowledge, culture, and social status of the primary caregivers. PMID:25995727

  3. Non-pharmacological interventions for caregivers of patients with schizophrenia: A meta-analysis.

    PubMed

    Chen, Li-Fen; Liu, Jia; Zhang, Jing; Lu, Xiao-Qin

    2016-01-30

    It has been estimated that about 50-80% of patients with schizophrenia live with or closely contact with their caregivers, and rely on them for housing, and emotional and financial supports. Caregiving experience is usually described as stressful for their caregivers. Non-pharmacological interventions seem to be beneficial to improving life quality. However, there is still no meta-analysis focused on this topic to give an overview.We searched the electronic databases includingPubMed, EMBASE, CINAHL, Cochrane Library and China National Knowledge Infrastructure, respectively from the beginning of database to July 2015 for all the randomized controlled trialsevaluating the caregiver interventions. Continuous data were expressed mean differences (MD) with 95% confidential intervals (CIs). Standardized mean difference was planned to express, if different scales were used to measure the same outcome. We pooled the results using a random-effect model.As a result, nine studies met the inclusion criteria, comprising 608 randomized participants. In which, 321 participants were in interventional group, while 287 participants were in control group. Concerning the care burden, there was significant difference found between non-pharmacological interventions and control groups (n=290, MD -2.10, 95% CI -3.46 to -0.74, P=0.002; level of heterogeneity τ(2)=1.81, χ(2)=62.13, df=3, P<0.00001, I(2)=95%). However, no differences were found in family support, family functioning and satisfaction. Of note, our meta-analysis demonstrated the efficacy of non-pharmacological interventions for caregivers of schizophrenia, and supported the application in the clinical practice. However, all the conclusions should be explained cautiously and further confirmation is required by well-designed trials with large sample.

  4. 76 FR 45818 - Burden of Food and Drug Administration Food Safety Modernization Act Fee Amounts on Small...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-08-01

    ...,000 die from food borne diseases, according to recent data from the Centers for Disease Control and... there ways to alleviate any burden on small business other than a fee reduction? Please explain. B. How... announcing the establishment of a docket to obtain information that will be used to formulate a proposed...

  5. Predictors of loneliness in caregivers of persons with Parkinson's disease.

    PubMed

    McRae, Cynthia; Fazio, Emily; Hartsock, Gina; Kelley, Livia; Urbanski, Shawna; Russell, Dan

    2009-09-01

    This study examined loneliness among caregivers of individuals with Parkinson's disease (PD). The sample included 70 caregivers (74% female; 96% spouses) who were currently living with the patient. A postal survey was sent to caregivers of persons with PD on the mailing list of a regional Parkinson association; response rate was 39%. Assessment instruments included the UCLA Loneliness Scale, Social Provisions Scale, Hoehn and Yahr (caregiver version), a perceived Self-Efficacy Scale developed previously for use with PD caregivers, and questions related to both patient and caregiver characteristics. Caregivers reported more loneliness than all similar normative groups except Alzheimer caregivers (P<0.001 to P=0.011). Hierarchical regression analyses were used to determine whether patient or caregiver characteristics were more predictive of loneliness. Results indicated that patient variables accounted for only 12% of the variance in loneliness, whereas caregiver variables accounted for an additional 46% of the variance (P<0.01). Among the significant individual caregiver predictors of greater loneliness were less education, lower perceived self-efficacy (both P<0.05) and poorer physical health (P<0.01). It was also found that persons attending caregiver support groups reported less loneliness (P<0.05) and more perceived support (P<0.05) than those not attending support groups. Because loneliness was significantly predicted by caregiver rather than patient variables, it is possible that strategic interventions for caregivers could ameliorate loneliness.

  6. Reducing the distance in distance-caregiving by technology innovation

    PubMed Central

    Benefield, Lazelle E; Beck, Cornelia

    2007-01-01

    Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1) the elder and the family caregiver(s) may reside in the same household; or 2) the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation. PMID:18044143

  7. Relationships Between Caregiver Violence Exposure, Caregiver Depression, and Youth Behavioral Health Among Homeless Families

    PubMed Central

    McGuire-Schwartz, Mandy; Small, Latoya A.; Parker, Gary; Kim, Patricia; McKay, Mary

    2015-01-01

    Homelessness affects a large and increasing number of families in the United States, and exposure to violence and other potentially traumatic events is common among homeless families. It is important to understand more about this population and, more specifically, about the relationship between youth mental health and caregiver mental health and trauma exposure among homeless families, in order to better serve the needs of this vulnerable population. The objective of this study is to explore the relationships between caregiver exposure to violence, caregiver depression, and youth depression and behavioral problems among homeless families. Preliminary findings indicate that among this sample of homeless families, caregiver violence exposure has statistically significant relationships with both youth behavioral problems and youth depression symptoms, as mediated by caregiver depression. These findings indicate that youth behavioral health is associated with caregiver mental health, which, in turn, is associated with caregiver trauma exposure. This highlights the importance of taking into account adult mental health while treating youth externalizing and internalizing behaviors and ensuring that caregivers, too, have access to adequate treatment and supports. Furthermore, this treatment should be trauma informed, given the link between trauma and mental health. PMID:26420978

  8. Counselors as Caregivers: The Validation of the Counselor Caregiving Questionnaire (CCQ)

    ERIC Educational Resources Information Center

    Fitch, Jenelle C.

    2008-01-01

    This research is a validation study of the Counselor Caregiving Questionnaire (CCQ). Doctoral-level students (N = 188) in clinical and counseling psychology training programs completed the following questionnaires: (a) Counselor Caregiving Questionnaire (Fitch & Pistole, 2006), (b) Relationship Questionnaire (Bartholomew & Horowitz, 1991),…

  9. Children's Attachment Relationships with Day Care Caregivers: Associations with Positive Caregiving and the Child's Temperament

    ERIC Educational Resources Information Center

    De Schipper, J. Clasien; Tavecchio, Louis W. C.; Van IJzendoorn, Marinus H.

    2008-01-01

    In this study, children's attachment relationships with their professional caregivers in center day care were observed for 48 children. We explored whether more positive caregiving was associated with a more secure attachment relationship and whether this association was stronger for more temperamentally irritable children compared to less…

  10. Family caregivers' support needs after brain injury: a synthesis of perspectives from caregivers, programs, and researchers.

    PubMed

    Gan, Caron; Gargaro, Judith; Brandys, Clare; Gerber, Gary; Boschen, Kathryn

    2010-01-01

    There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.

  11. Burden of Proof in Bioethics.

    PubMed

    Koplin, Julian J; Selgelid, Michael J

    2015-11-01

    A common strategy in bioethics is to posit a prima facie case in favour of one policy, and to then claim that the burden of proof (that this policy should be rejected) falls on those with opposing views. If the burden of proof is not met, it is claimed, then the policy in question should be accepted. This article illustrates, and critically evaluates, examples of this strategy in debates about the sale of organs by living donors, human enhancement, and the precautionary principle. We highlight general problems with this style of argument, and particular problems with its use in specific cases. We conclude that the burden ultimately falls on decision-makers (i.e. policy-makers) to choose the policy supported by the best reasons.

  12. Demographic and socio-economic influences on community-based care and caregivers of people with dementia in China

    PubMed Central

    Lang, Linda; Clifford, Angela; Chen, Yang; Han, Thang S

    2016-01-01

    Background Dementia is a major public health challenge and China has the largest population with dementia in the world. However, dementia care and caregivers for Chinese are less investigated. Objectives and design To evaluate demographic and socio-economic influences on dementia care, management patterns and caregiver burden in a household community-dwelling-based survey, using participants’ care receipts and Zarit scale. Setting and participants Rural and urban communities across six provinces of China comprising 4837 residents aged ≥60 years, in whom 398 had dementia and 1312 non-dementia diseases. Results People with dementia were less likely to receive care if they were living in rural compared to urban areas (Odd ratio (OR) = 0.20; 95%CI: 0.10–0.41), having education level below compared to above secondary school (OR = 0.24; 95%CI: 0.08–0.70), manual labourer compared to non-manual workers (OR = 0.27; 95%CI: 0.13–0.55), having personal annual income below RMB 10,000 yuan (£1000) compared to above (OR = 0.37; 95%CI: 0.13–0.74) or having four or more than compared to less four children (OR = 0.52; 95%CI: 0.27–1.00). Caregivers for dementia compared with those for non-dementia diseases were younger and more likely to be patients’ children or children in-law, had lower education and spent more caring time. Caregiver burden increased with low education, cutback on work and caring for patients who were younger or living in rural areas, and this caregiver burden was three-fold greater than that for non-dementia diseases. Conclusions There are a number of inequalities in dementia care and caregiver burden in China. Reducing the socio-economic gap and increasing education may improve community care for people with dementia and preserve caregivers’ well-being. PMID:27478589

  13. A Randomized Controlled Trial of Clinician-Supported Problem-Solving Bibliotherapy for Family Caregivers of People With First-Episode Psychosis

    PubMed Central

    Chien, Wai Tong; Thompson, David R.; Lubman, Dan I.; McCann, Terence V.

    2016-01-01

    Family interventions for first-episode psychosis (FEP) are an integral component of treatment, with positive effects mainly on patients’ mental state and relapse rate. However, comparatively little attention has been paid to the effects of family interventions on caregivers’ stress coping and well-being, especially in non-Western countries. We aimed to test the effects of a 5-month clinician-supported problem-solving bibliotherapy (CSPSB) for Chinese family caregivers of people with FEP in improving family burden and carers’ problem-solving and caregiving experience, and in reducing psychotic symptoms and duration of re-hospitalizations, compared with those only received usual outpatient family support (UOFS). A randomized controlled trial was conducted across 2 early psychosis clinics in Hong Kong, where there might be inadequate usual family support services for FEP patients. A total of 116 caregivers were randomly selected, and after baseline measurement, randomly assigned to the CSPSB or UOFS. They were also assessed at 1-week and 6- and 12-month post-intervention. Intention-to-treat analyses were applied and indicated that the CSPSB group reported significantly greater improvements in family burden and caregiving experience, and reductions in severity of psychotic symptoms and duration of re-hospitalizations, than the UOFS group at 6- and 12-month follow-up. CSPSB produces moderate long-term benefits to caregivers and FEP patients, and is a low-cost adjunct to UOFS. PMID:27147450

  14. BURDEN FALLS ROADLESS AREA, ILLINOIS.

    USGS Publications Warehouse

    Klasner, John S.; Thompson, Robert M.

    1984-01-01

    The Burden Falls Roadless Area lies in the Shawnee National Forest of southern Illinois, about 5 mi west of the western edge of the Illinois-Kentucky fluorspar district. Geologic mapping and geochemical surveys indicate that the area has little promise for the occurrence of fluorspar and associated minerals; other special studies also indicate little promise for oil and gas and construction materials. Traces of gold and silver were detected in some geochemical samples but follow-up studies indicate little promise for the occurrence of resources of these metals within the Burden Falls Roadless Area.

  15. Reflecting on the global burden of musculoskeletal conditions: lessons learnt from the global burden of disease 2010 study and the next steps forward.

    PubMed

    Hoy, Damian G; Smith, Emma; Cross, Marita; Sanchez-Riera, Lidia; Blyth, Fiona M; Buchbinder, Rachelle; Woolf, Anthony D; Driscoll, Tim; Brooks, Peter; March, Lyn M

    2015-01-01

    The objective of this paper is to provide an overview of the strengths, limitations and lessons learned from estimating the burden from musculoskeletal (MSK) conditions in the Global Burden of Disease 2010 Study (GBD 2010 Study). It should be read in conjunction with the other GBD 2010 Study papers published in this journal. The strengths of the GBD 2010 Study include: the involvement of a MSK expert group; development of new and more valid case definitions, functional health states, and disability weights to better reflect the MSK conditions; the extensive series of systematic reviews undertaken to obtain data to derive the burden estimates; and the use of a new, more advanced version of the disease-modelling software (DisMod-MR). Limitations include: many regions of the world did not have data; the extent of heterogeneity between included studies; and burden does not include broader aspects of life, such as participation and well-being. A number of lessons were learned. Ongoing involvement of experts is critical to ensure the success of future efforts to quantify and monitor this burden. A paradigm shift is urgently needed among global agencies in order to alleviate the rapidly increasing global burden from MSK conditions. Prevention and control of MSK disability are required, along with health system changes. Further research is needed to improve understanding of the predictors and clinical course across different settings, and the ways in which MSK conditions can be better managed and prevented.

  16. The Physical Burdens of Secrecy

    ERIC Educational Resources Information Center

    Slepian, Michael L.; Masicampo, E. J.; Toosi, Negin R.; Ambady, Nalini

    2012-01-01

    The present work examined whether secrets are experienced as physical burdens, thereby influencing perception and action. Four studies examined the behavior of people who harbored important secrets, such as secrets concerning infidelity and sexual orientation. People who recalled, were preoccupied with, or suppressed an important secret estimated…

  17. Socioeconomic and Demographic Disparities in Caregiving Intensity and Quality of Life in Informal Caregivers: A First Look at the National Study of Caregiving.

    PubMed

    Cohen, Steven A; Cook, Sarah K; Sando, Trisha A; Brown, Monique J; Longo, Daniel R

    2017-03-02

    Informal caregiving is an integral component of the health care system, saving the national economy more than $522 billion annually. The current study examined how the association between caregiving intensity and caregiver quality of life varies by sociodemographic factors through a secondary analysis of the National Study of Caregiving. Generalized linear models assessed the associations among four aspects of caregiving intensity, three aspects of caregiver quality of life, and key sociodemographic factors. Compared to White individuals, Black individuals had higher levels of overall caregiving intensity (β = 0.293, 95% confidence interval [CI] [0.140, 0.447]), number of instrumental activities of daily living performed (β = 0.060, 95% CI [0.030, 0.090]), and hours spent caregiving per month (β = 0.025, 95% CI [0.002, 0.049]), yet experienced significantly fewer negative impacts on quality of life. Understanding how informal caregiving affects caregiver quality of life is critical to inform public health policies and programs designed to support caregivers and protect this critical component of the U.S. health care system. [Journal of Gerontological Nursing, xx(x), xx-xx.].

  18. 40 CFR 22.24 - Burden of presentation; burden of persuasion; preponderance of the evidence standard.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 40 Protection of Environment 1 2010-07-01 2010-07-01 false Burden of presentation; burden of... Burden of presentation; burden of persuasion; preponderance of the evidence standard. (a) The complainant has the burdens of presentation and persuasion that the violation occurred as set forth in...

  19. Caregiver-mediated intervention can improve physical functional recovery of patients with chronic stroke: a randomized controlled trial.

    PubMed

    Wang, Tzu-Chi; Tsai, Alan C; Wang, Jiun-Yi; Lin, Yu-Te; Lin, Ko-Long; Chen, Jiun Jiang; Lin, Bei Yi; Lin, Tai Ching

    2015-01-01

    Background and Purpose. Patients with chronic stroke may benefit from continuing rehabilitation training after hospital discharge. This study examined whether caregiver-mediated, home-based intervention (CHI) could improve physical functioning and social participation in these patients. Methods. A single-blind, randomized, controlled 12-week trial conducted with 51 patients from 3 hospitals in Taiwan who had chronic stroke (>6 months; Brunnstrom recovery stages III-V). Patients and their caregivers in the intervention arm (n = 25) were given weekly personalized CHI trainings designed by a physical therapist. Patients in the control arm (n = 26) received visits from the therapist without intervention. All were evaluated for physical recovery through the Stroke Impact Scale, Berg Balance Scale, 10-Meter Walk Test, 6-Minute Walk Test, and Barthel Index at baseline and endpoint. Caregivers were evaluated with the Caregiver Burden Scale. Results were analyzed through Mann-Whitney U test. Results. CHI significantly improved scores of the Stroke Impact Scale: strength (control vs intervention, respectively: 1.4 vs 15.5; P = .002), mobility (-0.5 vs 13.7; P < .001), composite physical (-0.7 vs 11.2; P < .001), and general recovery domain (0.2 vs 17.4; P < .001). CHI also significantly improved free-walking velocity (-1.4 vs 7.5 cm/s; P = .006), 6-minute walk distance (-10.5 vs 15.8 m; P = .003), Berg Balance Scale score (-0.8 vs 4.5; P = .006), and Barthel Index score (0.6 vs 7.2; P = .008). CHI did not significantly increase caregiver burden at endpoint. Conclusion. CHI can improve physical functional recovery and, possibly, social participation in patients with chronic stroke.

  20. The Last Days of Life: Symptom Burden and Impact on Nutrition and Hydration in Cancer Patients

    PubMed Central

    Hui, David; Dev, Rony; Bruera, Eduardo

    2016-01-01

    Purpose of review We will review the symptom burden in cancer patients in the last days of life, its impact on nutrition and hydration, and the role of artificial nutrition and hydration in patients with days of life expectancy. Recent findings In the last days of life, cancer patients often experience progressive functional decline and worsening symptom burden. Many symptoms such as anorexia-cachexia, dysphagia and delirium could impair oral intake. These, coupled with refractory cachexia, contribute to persistent weight loss and decreased quality of life. Furthermore, the inability to eat/drink and body image changes can result in emotional distress for patients and caregivers. Clinicians caring for these individuals need to ensure longitudinal communication about goals of care, education about the natural process of dying, optimization of symptom management, and provide appropriate emotional support for patients and caregivers. There is a lack of evidence to support that artificial nutrition and hydration can improve outcomes in the last days of life. Artificial nutrition is not recommended because of its invasive nature, while artificial hydration may be considered on a case-by-case basis. Summary This review highlights the need to conduct further research on symptom burden, nutrition and hydration in the last days of life. PMID:26509860

  1. Informal caregivers assisting people with multiple sclerosis: factors associated with the strength of the caregiver/care recipient relationship.

    PubMed

    Buchanan, Robert J; Huang, Chunfeng

    2011-01-01

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

  2. Reciprocity in Adolescent and Caregiver Violence

    PubMed Central

    Bartle-Haring, Suzanne; Slesnick, Natasha; Carmona, Jasmin

    2014-01-01

    Over a 2-year period, with assessments every six months, the reciprocity in violent behaviors (verbal and physical) was investigated in a sample of 161 adolescents, who met the criteria for substance or alcohol abuse or dependence, and their caregivers, who participated in a clinical trial for family treatment for adolescent substance abuse. Using observed variables in a structural equation model with panel data, there was very little stability in violent behaviors across time from the perspectives of both the adolescents and caregivers. Evidence for violence reciprocity between adolescent and caregiver was demonstrated toward the end of the study period. The results are discussed in the context of previous literature about adolescent-to-parent violence. PMID:25684856

  3. A Qualitative Study of Caregivers' Attitudes about Child Care.

    ERIC Educational Resources Information Center

    Innes, Robert B; Innes, Sharon M.

    1984-01-01

    Interviews of 31 caregivers and directors of day care centers assessed role identity constructs and attitudes toward parents and the child care profession. Results concluded that conflict over attachment issues contributed to problems between parents and caregivers. (Author/CI)

  4. 77 FR 66525 - National Family Caregivers Month, 2012

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-11-06

    ... and partners become caregivers to the ones they love even as they navigate their own health challenges..., social engagement, and stability to those they love. Family caregivers have an immeasurable impact on...

  5. Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs

    PubMed Central

    2014-01-01

    Background Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients’ hospitalisation. This study aimed to explore family carers’ burden in the final three months of the patient’s life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation. Methods A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted. Results The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised. Conclusions The different overall assessment of family carers’ burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers’ personal needs. PMID:24678941

  6. Lightweight, Economical Device Alleviates Drop Foot

    NASA Technical Reports Server (NTRS)

    Deis, B. C.

    1983-01-01

    Corrective apparatus alleviates difficulties in walking for victims of drop foot. Elastic line attached to legband provides flexible support to toe of shoe. Device used with flat (heelless) shoes, sneakers, crepe-soled shoes, canvas shoes, and many other types of shoes not usable with short leg brace.

  7. Alleviation of Communication Apprehension: An Individualized Approach.

    ERIC Educational Resources Information Center

    Watson, Arden K.

    Communication apprehension (CA) affects from 15% to 20% of the college population, indicating inherent problems of negative cognitive appraisal, conditioned anxiety, or skills deficits. Use of an individualized approach to the alleviation of CA has been shown to increase students' class interaction and to improve their verbal skills. During an…

  8. The Attitudes of Chinese Cancer Patients and Family Caregivers toward Advance Directives

    PubMed Central

    Zhang, Qiu; Xie, Chuanbo; Xie, Shanghang; Liu, Qing

    2016-01-01

    Advance directives (ADs) have been legislated in many countries to protect patient autonomy regarding medical decisions at the end of life. China is facing a serious cancer burden and cancer patients’ quality at the end of life should be a concern. However, limited studies have been conducted locally to gather information about attitudes toward ADs. The purpose of this study was to investigate the attitudes of Chinese cancer patients and family caregivers toward ADs and to explore the predictors that are associated with attitudes. The study indicated that although there was low awareness of ADs, most cancer patients and family caregivers had positive attitudes toward ADs after related information was explained to them. Participants preferred to discuss ADs with medical staff when they were diagnosed with a life-threatening disease. Preferences for refusing life-sustaining treatment and choosing Hospice-Palliative Care (HPC) at the end of life would increase the likelihood of agreeing with ADs. This suggests that some effective interventions to help participants better understand end-of-life treatments are helpful in promoting ADs. Moreover, the development of HPC would contribute to Chinese cancer patients and family caregivers agreeing with ADs. PMID:27529264

  9. Quality of life and coping strategies of caregivers of children with physical and mental disabilities

    PubMed Central

    Ganjiwale, Deepak; Ganjiwale, Jaishree; Sharma, Bharti; Mishra, Brajesh

    2016-01-01

    Background: Developmental disability is a term that refers to permanent cognitive and or physical impairment. Arrested development of physical or mental capacities can lead to number of problems for the sufferer as well as the carers. Methodology: This study was conducted to assess the quality of life (QOL) and coping mechanisms used by the carers of physically challenged children. In this cross-sectional study, all the 116 children from a school for children with special needs in Anand, Gujarat and their carers were included. World Health Organization-QOL (WHO-QOL) and BREF COPE were administered to measure QOL and coping strategies, respectively. Results: On WHO-QOL, the social relationship domain was observed to be the best while environment domain had the lowest score. The main coping style used by the caregivers was Active emotional coping. Conclusions: Significant differences were found in QOL of the caregivers of physically challenged children based on the type of disability of the child. Rehabilitation programs can be planned to provide psychological support to the caregivers to ease the burden if any through collaborative efforts. PMID:27843839

  10. Effectiveness of an intervention in groups of family caregivers of dependent patients for their application in primary health centers. Study protocol

    PubMed Central

    2010-01-01

    Background Although Primary Health Care (PHC) Teams are used to deal with prevention and treatment of sanitary problems in adults with chronic diseases, they usually have a lack of experience in development of psychotherapeutic interventions. However, these interventions are the ones that achieve better results to reduce symptomatology and improve emotional state of caregivers. The study aims to evaluate the effectiveness of an intervention of psychotherapy in improving the mental health and Quality of life of caregivers. This intervention is based on theoretical approaches to care adjusted to cognitive theory, in order to be applied in primary health care centres. Methods/Design This is multicentre clinical trials study, randomized in two parallel groups, carry out in two PHC, Study population: 150 caregivers will be included by consecutive sampling and they will be randomized the half to experimental group and the other half to control group. They provide mostly all the assistance to care-dependent familiars receiving attention in PHC Centers. Measurements: Each caregiver will be evaluated on a personal interview. The caregivers' assessment protocol: 1) Assessment of different socio-demographic related to care, and caregiver's personal situation. 2)Care-dependent individuals will also be assessed by Barthel Index and Pfeiffer Questionnaire (SPMSQ). 3)Change in caregivers will be the principal measure: family function (Family APGAR Questionnaire), burden short questionnaire (Short Zarit Burden Interview), quality of life (Ruiz & Baca: 1993 Questionnaire), the Duke-UNK Functional Social Support Questionnaire, the General Health Questionnaire-12, and changes in Dysfunctional Thoughts about caring. 4) Intervention implementation measures will also be assessed. Intervention: A psychotherapeutic intervention will be 8 sessions of 90 minutes in groups. This intervention has been initially developed for family caregivers of patients with dementia. Discussion

  11. Attachment and Child Care: Relationships With Mother and Caregiver.

    ERIC Educational Resources Information Center

    Howes, Carolee; And Others

    1988-01-01

    Two studies examined the influences of concordant and nonconcordant attachment relationships to mothers and to child caregivers on children's behavior in child care. In both studies, the child's level of competence in play with the caregiver and engagement with peers was a function of attachment security with both mother and caregiver. (NH)

  12. Balancing Caregiving and Work: Role Conflict and Role Strain Dynamics

    ERIC Educational Resources Information Center

    Gordon, Judith R.; Pruchno, Rachel A.; Wilson-Genderson, Maureen; Murphy, Wendy Marcinkus; Rose, Miriam

    2012-01-01

    Positing role conflict as a bidirectional construct in which work interferes with caregiving (WIC) and caregiving interferes with work (CIW), this study investigated its antecedents (demands and support of caregiving and work) and consequences (role strain). A national sample of 583 women between the ages of 50 and 64 years identified using…

  13. Caregiver Sensitivity, Contingent Social Responsiveness, and Secure Infant Attachment

    ERIC Educational Resources Information Center

    Dunst, Carl J.; Kassow, Danielle Z.

    2008-01-01

    Findings from two research syntheses of the relationship between caregiver sensitivity and secure infant attachment and one research synthesis of factors associated with increased caregiver use of a sensitive interactional style are presented. The main focus of analysis was the extent to which different measures of caregiver contingent social…

  14. Familism Beliefs and Psychological Distress among African American Women Caregivers

    ERIC Educational Resources Information Center

    Rozario, Philip A.; DeRienzis, Daniel

    2008-01-01

    Purpose: Drawing from stress and coping models, we examined heterogeneity in the expression of familism (i.e., beliefs about the caregiving role) and its impact on psychological distress among African American women caregivers. Design and Methods: We relied on data from the Black Rural and Urban Caregivers Mental Health and Functioning study, a…

  15. Congruence between Disabled Elders and Their Primary Caregivers

    ERIC Educational Resources Information Center

    Horowitz, Amy; Goodman, Caryn R.; Reinhardt, Joann P.

    2004-01-01

    Purpose: This study examines the extent and independent correlates of congruence between disabled elders and their caregivers on several aspects of the caregiving experience. Design and Methods: Participants were 117 visually impaired elders and their caregivers. Correlational analyses, kappa statistics, and paired t tests were used to examine the…

  16. Early Intervention Provider Use of Child Caregiver-Teaching Strategies

    ERIC Educational Resources Information Center

    Campbell, Philippa H.; Coletti, Catherine Ehret

    2013-01-01

    The purpose of this study was to identify the extent to which multidiscipline early intervention providers identified and demonstrated caregiver-teaching strategies. A total of 78 providers submitted 205 videotaped segments to illustrate 1 of 5 caregiver-teaching strategies (i.e., demonstration; caregiver practice with feedback; guided practice;…

  17. Setting Up Environments. Infant/Toddler Caregiving: A Guide.

    ERIC Educational Resources Information Center

    Lally, J. Ronald; Stewart, Jay

    For use in conjunction with training videotapes illustrating key concepts and caregiving techniques, this guide aims to help caregivers set up environments for infants and toddlers that promote young children's health, safety, and comfort, meet their developmental needs, and provide caregivers a comfortable and convenient place to work. Section 1…

  18. Adult Caregiving among American Indians: The Role of Cultural Factors

    ERIC Educational Resources Information Center

    Goins, R. Turner; Spencer, S. Melinda; McGuire, Lisa C.; Goldberg, Jack; Wen, Yang; Henderson, Jeffrey A.

    2011-01-01

    Purpose: With a sample of American Indian adults, we estimated the prevalence of adult caregiving, assessed the demographic and cultural profile of caregivers, and examined the association between cultural factors and being a caregiver. This is the first such study conducted with American Indians. Design and Methods: Data came from a…

  19. 76 FR 68621 - National Family Caregivers Month, 2011

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-11-04

    ... Documents#0;#0; ] Proclamation 8748 of November 1, 2011 National Family Caregivers Month, 2011 By the... National Family Caregivers Month, we pay tribute to the individuals throughout America who ensure the... observe National Family Caregivers Month, we honor the tireless compassion of Americans who heal,...

  20. Creative Movement as a Stress-Reduction Intervention for Caregivers

    ERIC Educational Resources Information Center

    Vetter, Rheba E.; Myllykangas, Susan A.; Donorfio, Laura K. M.; Foose, Alice K.

    2011-01-01

    A caregiver is one who provides formal or informal services to a person with physical disabilities or a long-term illness. The day-to-day responsibilities place inordinate amounts of stress on caregivers. Thus, caregivers need mental and physical support. Creative movement enables dancers to express anxieties through movement and to experience an…

  1. Psychological Symptoms Before and After a 14-Day Initial Inpatient Treatment in Tuberculosis Patients Compared with Their Primary Caregivers and Healthy Controls

    PubMed Central

    Emami, Habib; Modarressi, Taher; Najmi, Kosar; Radmand, Golnar; Tabarsi, Payam; Richter, Jörg

    2015-01-01

    Background: Tuberculosis (TB) is one of the most challenging public health burdens in the world. Recent research demonstrated high prevalence of mental disorders in TB patients and their caregivers. The purpose of this study was to assess mental health of TB patients and their caregivers in Iran before and after a two-week inpatient treatment and to determine the prevalence of psychological problems in these groups. Materials and Methods: A standardized questionnaire (SCL-90) was used to assess psychological symptoms in 146 hospitalized TB patients and their caregivers (n=89). Furthermore, the scores of both target groups were compared with those of a group of healthy individuals (n=85). Results: The mean scores before the start of the initial treatment of the patients were significantly lower for paranoid ideation (P=0.038) and hostility (P= 0.046), and the scores of depression (P=0.046) and somatization (P=0.001) were significantly higher than those of the healthy individuals. The patients scored significantly higher than the caregivers on depression (0.047) and somatization (P< 0.001), whereas the caregivers scored higher than the healthy individuals on paranoid ideation (P= 0.044) and hostility (P= 0.034). Multiple linear regression showed that age, educational level and marital status were factors affecting the mental health of TB patients and their caregivers. The variance in psychological symptoms of the patients was between 10% (paranoid ideation) and 27% (hostility) of the variance in the symptoms of their caregivers. Conclusion: Tuberculosis control and treatment programs should not only address issues like continued respiratory symptoms, but should also focus on mental health in TB patients and their caregivers. PMID:26858764

  2. The Economic Burden of Chronic Kidney Disease and End-Stage Renal Disease.

    PubMed

    Wang, Virginia; Vilme, Helene; Maciejewski, Matthew L; Boulware, L Ebony

    2016-07-01

    The growing prevalence and progression of chronic kidney disease (CKD) raises concerns about our capacity to manage its economic burden to patients, caregivers, and society. The societal direct and indirect costs of CKD and end-stage renal disease are substantial and increase throughout disease progression. There is significant variability in the evidence about direct and indirect costs attributable to CKD and end-stage renal disease, with the most complete evidence concentrated on direct health care costs of patients with advanced to end-stage CKD. There are substantial gaps in evidence that need to be filled to inform clinical practice and policy.

  3. Caregiving in Developing East and Southeast Asian Countries [and] Caregiving among Middle and Low Income Aged in Hong Kong.

    ERIC Educational Resources Information Center

    Chow, Nelson W. S.; Kwan, Alex Y. H.

    This report consists of two papers on caregiving in Asian countries. The first, "Caregiving in Developing East and Southeast Asian Countries" by Nelson W. S. Chow, discusses the change in the caregiving pattern for the urban elderly in developing countries of East and Southeast Asia. It includes examples from studies carried out in…

  4. Measuring the Interactive Skills of Caregivers in Child Care Centers: Development and Validation of the Caregiver Interaction Profile Scales

    ERIC Educational Resources Information Center

    Helmerhorst, Katrien O. W.; Riksen-Walraven, J. Marianne; Vermeer, Harriet J.; Fukkink, Ruben G.; Tavecchio, Louis W. C.

    2014-01-01

    Research Findings: High-quality caregiver-child interactions constitute the core of high-quality child care for young children. This article describes the background and development of the Caregiver Interaction Profile (CIP) scales to rate 6 key skills of caregivers for interacting with 0-to 4-year-old children in child care centers: sensitive…

  5. The impact of caregiver-mediated JASPER on child restricted and repetitive behaviors and caregiver responses.

    PubMed

    Harrop, Clare; Gulsrud, Amanda; Shih, Wendy; Hovsepyan, Lilit; Kasari, Connie

    2016-12-02

    Restricted and repetitive behaviors (RRBs) are a core feature of autism spectrum disorder (ASD). Compared to the social-communication impairments, we know considerably less about why children engage in RRBs and if and how to intervene with these behaviors. As a result, early intervention has typically focused on social-communication. In this study, we were interested in understanding how child RRBs changed following an intervention targeting social-communication behaviors and if caregiver training changed how they responded to their child's RRBs. Eighty-six toddlers with ASD and their caregivers received one of two interventions: caregivers were either actively coached while playing with their child (JASPER) or attended information sessions about ASD. On three different occasions (when they entered the study, following 10 weeks of intervention and 6-months after) caregivers were filmed playing with their child. From these recordings, we coded child RRBs and caregiver responses to these behaviors. Child RRBs remained relatively stable following intervention in both groups, but increased when the children returned at 6-months. Caregivers who received one-on-one coaching (JASPER) responded to a greater number of their child's RRBs and their responses were rated as more successful. Our study showed that a short-term social-communication intervention delivered through caregivers had "spillover effects" on how they also responded to their child's RRBs. Interventions targeting social-communication behaviors should also examine how these treatments affect child RRBs and how caregiver responses to these behaviors may change following training. Autism Res 2017, 0: 000-000. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.

  6. Lennox–Gastaut syndrome: impact on the caregivers and families of patients

    PubMed Central

    Gibson, Patricia A

    2014-01-01

    Lennox–Gastaut syndrome (LGS) has a major impact on the health-related quality of life (HRQL) of the affected children as well as their caregivers. The primary caregiver in the family is generally the mother, with support from the father and siblings. The burden of care and the effects of the disease on the child necessitate adjustments in virtually all aspects of the lives of their family. These adjustments inevitably affect the physical, emotional, social, and financial health of the whole family. Numerous sources of support for families can help to ease the burden of care. Improvements in the treatment of LGS, in addition to helping the child with LGS, would likely help improve the HRQL of the family members. This pilot parent survey was designed to explore the impact of epilepsy on caregiver HRQL. Parents of children with epilepsy who had contacted the Epilepsy Information Service at the Wake Forest University School of Medicine, Winston-Salem, NC, USA, were sent questionnaires comprising open- and closed-ended questions. A total of 200 surveys were distributed, with a return rate of 48%. The results revealed that 74% of the parents believed that having a child with epilepsy brought them and their partner closer together. However, when the parents were asked to explain the manner in which epilepsy affected their families, answers included continuous stress, major financial distress, and lack of time to spend with other children. Information and resources for the families of children with LGS could help improve the HRQL of both the patients and their relatives. PMID:25336963

  7. Home Child Care: A Caregiver's Guide.

    ERIC Educational Resources Information Center

    Dunster, Lee

    Intended for those already providing home child care or those considering becoming a caregiver in Canada, this book provides practical ideas and advice covering the many areas involved in home child care, from organization of the home to resources available to the provider. Chapter 1 describes how home child care can be provided, how to adapt to…

  8. Parent-Child-Caregiver: The Attachment Triangle

    ERIC Educational Resources Information Center

    Caldwell, Bettye

    2005-01-01

    One of the most consistently recurring themes in great literature is the love triangle--Arthur and Guinevere and Lancelot, Tristan and Isolde and King Mark, and countless others. No one has produced an immortal story about it; but a love triangle plays itself out day after day in the lives of parents, young children, and caregivers. In this…

  9. Dementia: The Experience of Family Caregivers.

    ERIC Educational Resources Information Center

    Chenoweth, Barbara; Spencer, Beth

    1986-01-01

    Caregivers of family members with dementia of the Alzheimer's type were surveyed for their experiences with early symptoms, obtaining a diagnosis, home care, and institutionalization. At each stage in the process of providing care there are new and different stresses that can be ameliorated by appropriate professional assistance. (Author)

  10. Family Caregiver Research and the HIPAA Factor

    ERIC Educational Resources Information Center

    Albert, Steven M.; Levine, Carol

    2005-01-01

    Research in family caregiving recently has become more challenging because of the strict protection of privacy mandated in the Health Insurance Portability and Accountability Act (HIPAA) of 1996. We ask when should Institutional Review Boards (IRBs) follow HIPAA rules to the letter and when might they use the waiver option? What is the appropriate…

  11. 38 CFR 71.40 - Caregiver benefits.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... mental health treatment. (6) Primary and Secondary Family Caregivers are to be considered eligible for... paragraph (a)(4) is limited to veterans enrolled in the VA health care system. Respite care may be provided... include an evaluation of the overall health and well-being of the eligible veteran. (3)...

  12. 38 CFR 71.40 - Caregiver benefits.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... mental health treatment. (6) Primary and Secondary Family Caregivers are to be considered eligible for... paragraph (a)(4) is limited to veterans enrolled in the VA health care system. Respite care may be provided... include an evaluation of the overall health and well-being of the eligible veteran. (3)...

  13. 38 CFR 71.40 - Caregiver benefits.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... mental health treatment. (6) Primary and Secondary Family Caregivers are to be considered eligible for... paragraph (a)(4) is limited to veterans enrolled in the VA health care system. Respite care may be provided... include an evaluation of the overall health and well-being of the eligible veteran. (3)...

  14. The Intergenerational Caregiving Program: A Replication Manual.

    ERIC Educational Resources Information Center

    Cohen, Marlene Cresci; And Others

    The Intergenerational Caregiving Program (ICP), a year long educational experience in human development and child care for older adults, is described in this replication manual. In its first year of operation, the ICP recruited older, usually retired adults from agencies and organizations in San Francisco that serve older people. The 22 older…

  15. Teaching University Students Family Caregiving Online

    ERIC Educational Resources Information Center

    Taylor, James

    2004-01-01

    This article describes an online course developed and currently offered at Middle Tennessee State University. Considering the statistics of family caregivers, their needs, and students and human service professionals education, the author demonstrates the necessity of such courses and their benefits. The author also considers the standards for…

  16. Teaching University Students Family Caregiving Online

    ERIC Educational Resources Information Center

    Taylor, James E.

    2004-01-01

    This article describes an online course developed and currently offered at Middle Tennessee State University. Considering the statistics of family caregivers, their needs, and students' and human service professionals' education, the author demonstrates the necessity of such courses and their benefits. The author also considers the standards for…

  17. Family Caregivers' Perspectives on Institutionalization Decisions.

    ERIC Educational Resources Information Center

    Townsend, Aloen L.

    Family caregivers may face ethical dilemmas when deciding whether a parent or spouse should enter a nursing home. There is considerable evidence that decisions about institutionalization are usually stressful and difficult for family members. This study obtained qualitative and quantitative data from two studies conducted at the Margaret Blenkner…

  18. Assessing Caregiver Information Needs: A Brief Questionnaire.

    ERIC Educational Resources Information Center

    Simonton, Linda J.; Haugland, S. M.

    A diagnostic evaluation for a person with suspected Alzheimer's disease is usually initiated by family members whose concerns go beyond strictly medical issues. To determine precisely what questions families want answered, a 15-point questionnaire was developed at a multi-disciplinary geriatric assessment clinic. Caregivers were asked to rate each…

  19. Effects of Guided Care on Family Caregivers

    ERIC Educational Resources Information Center

    Wolff, Jennifer L.; Giovannetti, Erin R.; Boyd, Cynthia M.; Reider, Lisa; Palmer, Sara; Scharfstein, Daniel; Marsteller, Jill; Wegener, Stephen T.; Frey, Katherine; Leff, Bruce; Frick, Kevin D.; Boult, Chad

    2010-01-01

    Purpose: Guided Care (GC) is a model of health care for multimorbid older adults that is provided by a registered nurse who works with the patients' primary care physician (PCP). The purpose of this study was to determine whether GC improves patients' primary caregivers' depressive symptoms, strain, productivity, and perceptions of the quality of…

  20. The Content of Education for Direct Caregivers

    ERIC Educational Resources Information Center

    Kusmaul, Nancy

    2016-01-01

    Direct caregivers in nursing homes are the certified nursing assistants (CNAs) who provide the majority of hands-on care. This study administered a knowledge instrument to a sample of CNAs () employed at nursing homes in a northeastern city to evaluate their knowledge in the domains of aging, cognition, and mental health. This study found that…

  1. 38 CFR 71.40 - Caregiver benefits.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... mental health treatment. (6) Primary and Secondary Family Caregivers are to be considered eligible for... paragraph (a)(4) is limited to veterans enrolled in the VA health care system. Respite care may be provided... maintain the eligible veteran's treatment plan and collaborate with clinical staff making home visits...

  2. Culture and Caregiving: Goals, Expectations, & Conflict.

    ERIC Educational Resources Information Center

    Fenichel, Emily, Ed.

    2003-01-01

    "Zero to Three" is a single-focus bulletin of the National Center for Infants, Toddlers, and Families providing insight from multiple disciplines on the development of infants, toddlers, and their families. This issue focuses on the goals, expectations, and conflict in the relationship between culture and child caregiving and other care…

  3. Caregivers feeding styles questionnaire. Establishing cutoff points

    Technology Transfer Automated Retrieval System (TEKTRAN)

    Researchers use the Caregiver's Feeding Styles Questionnaire (CFSQ) to categorize parent feeding into authoritative, authoritarian, indulgent, and uninvolved styles. The CFSQ assesses self-reported feeding and classifies parents using median splits which are used in a substantial body of parenting l...

  4. School Crisis Aftermath: Care for the Caregivers

    ERIC Educational Resources Information Center

    Paine, Cathy Kennedy

    2009-01-01

    "Professional" crisis caregivers (e.g., emergency responders, mental health providers, medical professionals, victim assistance counselors, and faith leaders) are trained to handle exposure to images of destruction and loss and to help victims or survivors cope with the impact of a crisis. They try to help individuals, schools, and communities…

  5. Diversity and Infant/Toddler Caregiving.

    ERIC Educational Resources Information Center

    Gonzalez-Mena, Janet; Bhavnagri, Navaz Peshotan

    2000-01-01

    Discusses the importance of cultural sensitivity and specific cultural knowledge when providing care for infants and toddlers. Makes suggestions for responding to cultural differences. Describes dialogue and reflective-thinking strategies for identifying and responding to cultural differences. Asserts that caregivers need diversity training to see…

  6. Women's Caregiving Careers and Retirement Financial Insecurity

    ERIC Educational Resources Information Center

    Orel, Nancy A.; Landry-Meyer, Laura; Spence, Maria A. S.

    2007-01-01

    Providing the essential care for children and aged relatives has immediate and long-term financial consequences for women, particularly financial insecurity in retirement. Women's caregiving careers are examined in relationship to the impact on retirement. The need for career and retirement education and counseling aimed at women who assume…

  7. Caregivers' reactions to preoperative procedures in outpatient pediatric surgery

    PubMed Central

    Velhote, André Bohomol; Bohomol, Elena; Velhote, Manoel Carlos Prieto

    2016-01-01

    ABSTRACT Objective: To identify pediatric caregivers' reactions in outpatient surgery settings. Methods: A quantitative descriptive/exploratory survey-based study involving application of a semi-structured questionnaire to 62 caregivers in two hospitals. Results: Most caregivers (88.7%) were mothers who submitted to preoperative fasting with their children. Nervousness, anxiety and concern were the most common feelings reported by caregivers on the day of the surgery. Conclusion: Medical instructions regarding preoperative procedures had significant positive impacts on patient care, and on patient and caregiver stress levels. PMID:27759831

  8. State-level income inequality and family burden of U.S. families raising children with special health care needs.

    PubMed

    Parish, Susan L; Rose, Roderick A; Dababnah, Sarah; Yoo, Joan; Cassiman, Shawn A

    2012-02-01

    Growing evidence supports the hypothesis that income inequality within a nation influences health outcomes net of the effect of any given household's absolute income. We tested the hypothesis that state-level income inequality in the United States is associated with increased family burden for care and health-related expenditures for low-income families of children with special health care needs. We analyzed the 2005-06 wave of the National Survey of Children with Special Health Care Needs, a probability sample of approximately 750 children with special health care needs in each state and the District of Columbia in the US Our measure of state-level income inequality was the Gini coefficient. Dependent measures of family caregiving burden included whether the parent received help arranging or coordinating the child's care and whether the parent stopped working due to the child's health. Dependent measures of family financial burden included absolute burden (spending in past 12 months for child's health care needs) and relative burden (spending as a proportion of total family income). After controlling for a host of child, family, and state factors, including family income and measures of the severity of a child's impairments, state-level income inequality has a significant and independent association with family burden related to the health care of their children with special health care needs. Families of children with special health care needs living in states with greater levels of income inequality report higher rates of absolute and relative financial burden.

  9. Cost analysis of inpatient treatment of anorexia nervosa in adolescents: hospital and caregiver perspectives

    PubMed Central

    Wong, Matthew; Katzman, Debra K.; Akseer, Nadia; Steinegger, Cathleen; Hancock-Howard, Rebecca L.; Coyte, Peter C.

    2015-01-01

    Background Admission to hospital is the treatment of choice for anorexia nervosa in adolescent patients who are medically unstable; however, stays are often prolonged and frequently disrupt normal adolescent development, family functioning, school and work productivity. We sought to determine the costs of inpatient treatment in this population from a hospital and caregiver perspective, and to identify determinants of such costs. Methods We used micro-costing methods for this cohort study involving all adolescent patients (age 12–18 yr) admitted for treatment of anorexia nervosa at a tertiary care child and adolescent eating disorder program in Toronto, between Sept. 1, 2011, and Mar. 31, 2013. We used hospital administrative data and Canadian census data to calculate hospital and caregiver costs. Results We included 73 adolescents in our cohort for cost-analysis. We determined a mean total hospital cost in 2013 Canadian dollars of $51 349 (standard deviation [SD] $26 598) and a mean total societal cost of $54 932 (SD $27 864) per admission, based on a mean length of stay of 37.9 days (SD 19.7 d). We found patient body mass index (BMI) to be the only significant negative predictor of hospital cost (p < 0.001). For every unit increase in BMI, we saw a 15.7% decrease in hospital cost. In addition, we found higher BMI (p < 0.001) and younger age (p < 0.05) to be significant negative predictors of caregiver costs. Interpretation The economic burden of inpatient treatment for adolescents with anorexia nervosa on hospitals and caregivers is substantial, especially among younger patients and those with lower BMI. Recognizing the symptoms of eating disorders early may preclude the need for admission to hospital altogether or result in admissions at higher BMIs, thereby potentially reducing these costs. PMID:26389097

  10. Effects of Guided Care on Family Caregivers

    PubMed Central

    Wolff, Jennifer L.; Giovannetti, Erin R.; Boyd, Cynthia M.; Reider, Lisa; Palmer, Sara; Scharfstein, Daniel; Marsteller, Jill; Wegener, Stephen T.; Frey, Katherine; Leff, Bruce; Frick, Kevin D.; Boult, Chad

    2010-01-01

    Purpose: Guided Care (GC) is a model of health care for multimorbid older adults that is provided by a registered nurse who works with the patients’ primary care physician (PCP). The purpose of this study was to determine whether GC improves patients’ primary caregivers’ depressive symptoms, strain, productivity, and perceptions of the quality of care recipients’ chronic illness care. Design and Methods: A cluster-randomized controlled trial of GC was conducted within 14 PCP teams. The study sample included 196 primary caregivers who completed baseline and 18-month surveys and whose care recipients remained alive and enrolled in the GC study for 18 months. Caregiver outcomes included the following: depressive symptoms (Center for Epidemiological Studies-Depression scale), strain (Modified Caregiver Strain Index), the quality of care recipients’ chronic illness care [Patient Assessment of Chronic Illness Care (PACIC)], and personal productivity (Work Productivity and Activity Impairment questionnaire, adapted for caregiving). Results: In multivariate regression models, between-group differences in depression, strain, work productivity, and regular activity productivity were not statistically significant after 18 months, but GC caregivers reported the overall quality of their recipients’ chronic illness care to be significantly higher (adjusted beta = 0.40, 95% confidence interval : 0.14–0.67). Quality was significantly higher in 4 of 5 PACIC subscales, reflecting the dimensions of goal setting, coordination of care, decision support, and patient activation. Implications: GC improved the quality of chronic illness care received by multimorbid care recipients but did not improve caregivers’ depressive symptoms, affect, or productivity. PMID:19710354

  11. Views on the Effects of the Spanish Dependency Law on Caregivers' Quality of Life Using Concept Mapping.

    PubMed

    Salvador-Piedrafita, María; Malmusi, Davide; Mehdipanah, Roshanak; Rodríguez-Sanz, Maica; Espelt, Albert; Pérez, Cristina; Solf, Elisabeth; Abajo Del Rincón, María; Borrell, Carme

    2017-04-01

    In 2006 the Spanish Dependency Law established new rights for people in situation of dependency. The impact of the Law could have also affected the quality of life of their carers. This study aims to understand how the Law may have influenced caregivers' quality of life through their own perceptions and those of Primary Health Care professionals, and to compare both perspectives. The study used Concept Mapping, a mixed methods technique. In total, 16 caregivers and 21 professionals participated. Both groups identified a mix of positive and negative effects. Uncertainties and delays in granting benefits were reported. However, several advantages were identified, such as the possibility of sharing the burden of care, thus reducing its physical, mental and social consequences, while at the same time being able to maintain responsibility. Most of the mechanisms identified were common to both caregivers and professionals; the most notable differences were that the latter attached more importance to economic support and less to the negative effects of implementation of the Law. This study reveals positive effects of the Law on caregivers' quality of life and the potential for improvement of some negative aspects in its implementation related with the context of austerity.

  12. Results and Lessons Learned from a Nurse Practitioner-Guided Dementia Care Intervention for Primary Care Patients and Their Family Caregivers

    PubMed Central

    Fortinsky, Richard H.; Delaney, Colleen; Harel, Ofer; Pasquale, Karen; Schjavland, Elena; Lynch, John; Kleppinger, Alison; Crumb, Suzanne

    2014-01-01

    Older adults with dementia care needs often visit primary care physicians (PCPs), but PCP dementia care limitations are widely documented. This study tested the value of employing a nurse practitioner (NP) with geropsychiatric expertise to augment PCP care for newly and recently diagnosed patients and family caregivers. Twenty-one dyads received the NP intervention; 10 dyads were controls. Outcomes included patient neuropsychiatric symptom and quality of life changes, and caregiver depression, burden, and self-efficacy changes. Intervention acceptability by patients, caregivers, and PCPs was determined. No outcome differences were found; however, the NP intervention was deemed highly satisfactory by all stakeholders. Patients experienced no significant cognitive decline during their 12-month study period, helping explain why outcomes did not change. Given widespread acceptability, future tests of this PCP-enhancing intervention should include patients with more progressive cognitive decline at study entry. NPs with geropsychiatric expertise are ideal interventionists for this rapidly growing target population. PMID:24444453

  13. Food Insecurity, Hunger, and Obesity Among Informal Caregivers

    PubMed Central

    Dobbertin, Konrad; Kulkarni-Rajasekhara, Sheetal; Beilstein-Wedel, Erin; Andresen, Elena M.

    2015-01-01

    Introduction Increasing numbers of US residents rely on informal caregiving from friends and family members. Caregiving can have substantial health and financial impacts on caregivers. This study addressed whether those impacts include adverse nutritional states. Specifically, we examined household food insecurity, individual hunger, and obesity among caregivers compared with noncaregivers. Methods We analyzed 2012 Behavioral Risk Factor Surveillance System data from Oregon. The Caregiving Module was administered to a random subset of 2,872 respondents. Module respondents included 2,278 noncaregivers and 594 caregivers providing care or assistance to a friend or family member with a health problem or disability. We used multivariable logistic regression to assess associations between caregiving status and each of our dependent variables. Results Caregivers had significantly greater odds of reporting household food insecurity (odds ratio [OR] = 2.10, P = .003) and personal hunger (OR = 2.89, P = .002), even after controlling for income and other correlates of food insecurity. There were no significant differences in obesity between caregivers and noncaregivers. Conclusion Caregiving is associated with increased risk of food insecurity and hunger in Oregon, suggesting that careful attention to the nutritional profile of households with family caregivers is needed in this population. PMID:26447547

  14. The role of family caregivers in HIV medication adherence.

    PubMed

    Beals, K P; Wight, R G; Aneshensel, C S; Murphy, D A; Miller-Martinez, D

    2006-08-01

    This study examines the role that mid-life and older wives and mothers play in promoting medication adherence among their HIV-infected husbands or adult sons who require daily living assistance. Interviews were conducted with 112 caregiving dyads, with caregivers reporting on their own behaviours and attitudes towards medications, and care-recipients (persons living with HIV [PLH]) providing information about their own adherence practices. By examining how caregiver characteristics, behaviours, and attitudes may influence PLH adherence it is explicitly recognized that caregivers and PLH are linked within a caregiving dyad. Findings indicate that caregivers often remind PLH to take medications, but these reminders are not significantly associated with adherence. Caregivers also report strong attitudes about medication hassles, concerns over treatment failure and general concerns about adherence. Controlling for background characteristics, high perceived adherence hassles on the part of the caregiver were associated with low PLH adherence, providing evidence of shared influence within the caregiving dyad. Adherence interventions may maximize their effectiveness if they consider the role of the family caregiver because these data suggest that caregiver attitudes are linked with PLH adherence behaviours.

  15. Development of older men's caregiving roles for wives with dementia.

    PubMed

    Hellström, Ingrid; Håkanson, Cecilia; Eriksson, Henrik; Sandberg, Jonas

    2017-01-25

    This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.

  16. Cross-cultural caregiving and the temporal dimension.

    PubMed

    Escandon, Socorro

    2013-11-01

    The caregiving research literature has explored and documented findings from psychological, clinical, and policy/program perspectives, but little is known regarding the contextual perspectives of caregiving. Temporal factors influence the structure and functioning of the caregiving family. The proposed paradigm adaptation extends a contextual perspective that addresses the exploration of the caregiving process as a temporal, dynamic, progressive process over time, in which decisions made by caregivers may not always be based on observable tasks but, nevertheless, may have important consequences. When cultures cross, attitudes and behaviors are modified, resulting from contact with a different set of values and beliefs. Cross-cultural research aims to explore these changes that take place over time. Future research should consider the inclusion of measures that assess the temporal aspect of caregiving and the acculturation considerations of family caregivers. These measures are especially needed because of the increased influence of international migration, economic globalization, and political conflicts in today's multicultural societies.

  17. [Terminal patient home care: the family caregivers perspective].

    PubMed

    Oliveira, Stefanie Griebeler; Quintana, Alberto Manuel; Denardin-Budó, Maria de Lourdes; de Moraes, Natália de Andrade; Lüdtke, Manoela Fonseca; Cassel, Paula Argemi

    2012-09-01

    This study was aimed at getting to know the relationships built among patients, family caregivers and the health care team, during home care,from the perspective of the family caregiver It is a qualitative study with 11 family caregivers of terminal patients, registered on a home care service of a university hospital in the South of Brazil. Data collection was carried out through narrative interviews that were recorded transcribed and analyzed through content analysis. Three categories were built from data analysis: relationships among the family caregiver, the patient and the health care team; awareness of the patient's terminal condition. the caregiver's perspective; and situation in which patients are unaware of their terminal condition. They approach how the home care relationships are established among the caregivers, such as health care professionals and family caregivers, and the people who are taken care of such as the patients, highlighting the importance of communication in such care related context.

  18. Financial Difficulty Effects on Depressive Symptoms Among Dementia Patient Caregivers.

    PubMed

    Nam, Ilsung

    2016-11-01

    The financial difficulty of dementia caregivers and its effects on mental health has gained increasing attention from researchers. The present study examines the longitudinal relationship between financial difficulty and the depressive symptoms of dementia caregivers using matching methods to account for potential selection bias. Propensity score matching methods and mixed-effects models were used to determine the effects of financial difficulty on depressive symptoms among caregivers participating in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) intervention program. Propensity score matching confirmed that caregivers experiencing financial difficulty were more likely to have depressive symptoms. The results suggest that dementia caregivers require support for their financial difficulty. Future research should fully examine the complex relationship between financial difficulty and the mental health of caregivers and how this issue can be addressed through assessment and intervention methods.

  19. Gust Alleviation Using Direct Gust Measurement

    NASA Technical Reports Server (NTRS)

    Hoppe, Sven Marco

    2000-01-01

    The increasing competition in the market of civil aircraft leads to operating efficiency and passenger comfort being very important sales arguments. Continuous developments in jet propulsion technology helped to reduce energy consumption, as well as noise and vibrations due to the engines. The main problem with respect to ride comfort is, however, the transmittance of accelerations and jerkiness imposed by atmospheric turbulence from the wings to the fuselage. This 'gust' is also a design constraint: Light airplane structures help to save, energy, but are more critical to resist the loads imposed by turbulence. For both reasons, efficient gust alleviation is necessary to improve the performance of modern aircraft. Gust can be seen as a change in the angle of attack or as an additional varying vertical component of the headwind. The effect of gust can be very strong, since the same aerodynamic forces that keep the airplane flying are involved. Event though the frequency range of those changes is quite low, it is impossible for the pilot to alleviate gust manually. Besides, most of the time during the flight, the, autopilot maintains course and the attitude of flight. Certainly, most autopilots should be capable of damping the roughest parts of turbulence, but they are unable to provide satisfactory results in that field. A promising extension should be the application of subsidiary, control, where the inner (faster) control loop alleviates turbulence and the outer (slower) loop controls the attitude of flight. Besides the mentioned ride comfort, another reason for gust alleviation with respect to the fuselage is the sensibility of electrical devices to vibration and high values of acceleration. Many modern airplane designs--especially inherently instable military aircraft--are highly dependent on avionics. The lifetime and the reliability of these systems is thus essential.

  20. Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness

    PubMed Central

    2014-01-01

    Background In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding – and sometimes preventing – disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment. Discussion As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization. Summary Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts. PMID:24969758