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The burden and benefits of caregiving: a latent class analysis
- Author:
- PRISTAVEC Teja
- Journal article citation:
- Gerontologist, 59(6), 2019, pp.1078-1091.
- Publisher:
- Oxford University Press
Background and Objectives: Informal caregiving to older adults is a key part of the U.S. long-term care system. Caregivers’ experiences consist of burden and benefits, but traditional analytic approaches typically consider dimensions independently, or cannot account for burden and benefit levels and combinations that co-occur. This study explores how benefits and burden simultaneously shape experiences of caregiving to older adults, and factors associated with experience types. Research Design and Methods: 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) data were linked to obtain reports from caregivers and recipients. Latent class and regression analysis were conducted on a nationally representative sample of U.S. informal caregivers to older persons. Results: Five distinguishable caregiving experiences types and their population prevalence were identified. Subjective burden and benefits level and combination uniquely characterize each group. Primary stressors (recipient depression, medical diagnoses), primary appraisal (activities of daily living, instrumental activities of daily living, medical task assistance, hours caregiving), and background/contextual factors (caregiver age, race, relationship to recipient, mental health, coresidence, long-term caregiving) are associated with experience types. Discussion and Implications: Findings highlight caregivers’ experience multiplicity and ambivalence, and identify groups that may benefit most from support services. In cases where it is not possible to reduce burden, assistance programs may focus on increasing the benefits perceptions. (Edited publisher abstract)
Long-distance caregiving: a systematic review of the literature
- Authors:
- CAGLE John G., MUNN Jean C.
- Journal article citation:
- Journal of Gerontological Social Work, 55(8), November 2012, pp.682-707.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Although it is estimated that there are 5 to 7 million long-distance caregivers (LDCs) in the United States, little is known about this growing population. This study reviewed the literature on LDCs and examined 16 identified studies. Although studies defined LDCs differently, a composite description of who LDCs are and what they do is presented. Findings revealed that LDCs make substantial contributions in terms of physical, financial, and social support. Distance complicates communication about care recipients' health and care needs, as well as the types of care that can be provided. Related to this, geographic separation can exacerbate care-related stressors. Implications for future research are discussed.
Coping with the caregiving role: differences between primary and secondary caregivers of dependent elderly people
- Authors:
- BARBOSA Ana, et al
- Journal article citation:
- Aging and Mental Health, 15(4), May 2011, pp.490-499.
- Publisher:
- Taylor and Francis
The coping strategies employed by primary carers of older people are well researched. However, little is known about secondary carers, who often share caring responsibilities. The Portuguese version of the of Caregivers' Assessment Management Index was administered to 90 primary carers, and 90 secondary carers in the Aveiro district of Portugal. Results indicate that emotion-cognitive strategies are less efficient for secondary caregivers. Common problem-solving strategies adopted by both types of caregivers involve relying on own their experience and expertise and addressing and finding a solution to the problem. Neither group were highly efficient at managing care-related stress, but both identified benefits from taking time off. The authors conclude that engaging secondary caregivers in available interventions is of paramount interest, as they can reduce the burden of primary carers and help delay institutionalisation for older people.
How formal navigators interpret their roles supporting families
- Authors:
- FUNK Laura, HOUNSLOW Wanda
- Journal article citation:
- Quality in Ageing and Older Adults, 20(1), 2019, pp.10-19.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to examine how formal navigators interpret their roles supporting families of older adults. Design/methodology/approach: This study was an interpretive inquiry informed by critical gerontology and discourse analytic methods. Interview data were collected and analysed from 22 formal service providers who helped older adults and their families navigate health and social care resources in one Western Canadian city. Findings: Although acknowledging structural barriers to service access, participants emphasized individual empowerment as their dominant strategy, interpreting their roles as providing information and education about services. In part, these interpretations may reflect the limited nature of their ability to help broker access or advocate; in part, they may also reflect the broader political and economic discourses surrounding care in Canada. Research limitations/implications: When providers position navigation and access to care as individual problems, this can obscure structural burden as well as potential inequities among older adults. Future research should examine whether navigational role interpretations are similar or different to those of navigators in other regions. Navigators in other health and social care contexts may enact differing meanings in their work. Practical implications: Although formal public navigators can play an important role, approaches that go beyond providing information may better meet families’ needs for support. Originality/value: This is one of the first studies focused specifically on providers’ interpretations of the meaning of navigational work in health and social care for older adults, and to extend a critical gerontological gaze toward the issue of system navigation. (Edited publisher abstract)
Investigating burden of informal caregivers in England, Finland and Greece: an analysis with the short form of the Burden Scale for Family Caregivers (BSFC-s)
- Authors:
- KONERDING Uwe, et al
- Journal article citation:
- Aging and Mental Health, 22(2), 2018, pp.280-287.
- Publisher:
- Taylor and Francis
Objectives: The burden of informal caregivers might show itself in different ways in different cultures. Understanding these differences is important for developing culture-specific measures aimed at alleviating caregiver burden. Hitherto, no findings regarding such cultural differences between different European countries were available. In this paper, differences between English, Finnish and Greek informal caregivers of people with dementia are investigated. Methods: A secondary analysis was performed with data from 36 English, 42 Finnish and 46 Greek caregivers obtained with the short form of the Burden Scale for Family Caregivers (BSFC-s). The probabilities of endorsing the BSFC-s items were investigated by computing a logit model with items and countries as categorical factors. Statistically significant deviation of data from this model was taken as evidence for country-specific response patterns. Results: The two-factorial logit model explains the responses to the items quite well (McFadden's pseudo-R-square: 0.77). There are, however, also statistically significant deviations (p < 0.05). English caregivers have a stronger tendency to endorse items addressing impairments in individual well-being; Finnish caregivers have a stronger tendency to endorse items addressing the conflict between the demands resulting from care and demands resulting from the remaining social life and Greek caregivers have a stronger tendency to endorse items addressing impairments in physical health. Conclusion: Caregiver burden shows itself differently in English, Finnish and Greek caregivers. Accordingly, measures for alleviating caregiver burden in these three countries should address different aspects of the caregivers’ lives. (Publisher abstract)
Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia
- Authors:
- STENSLETTEN Kari, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 15(6), 2016, pp.1422-1435.
- Publisher:
- Sage
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. The authors 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. They used multiple regression analysis in a general linear model procedure. The authors 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. (Edited publisher abstract)
Stressors and caregivers’ depression: multiple mediators of self-efficacy, social support, and problem-solving skill
- Authors:
- TANG Fengyan, et al
- Journal article citation:
- Social Work in Health Care, 54(7), 2015, pp.651-668.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem solving in mediating the relationships between caregiver stressors and depressive symptoms. Using a sample of 91 family caregivers, the authors tested simultaneously multiple mediators between caregiver stressors and depression. Results indicate that self-efficacy mediated the pathway from daily hassles to depression. Findings point to the importance of improving self-efficacy in psychosocial interventions for caregivers of older adults with memory loss. (Edited publisher abstract)
Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong
- Authors:
- CHAN Christopher, CHUI Ernest
- Journal article citation:
- Aging and Mental Health, 15(4), May 2011, pp.500-509.
- Publisher:
- Taylor and Francis
This study examined the association between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their partners. One hundred and two carers for elderly spouses were recruited from home care services in Hong Kong. Interviews were conducted measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and carer burden. Analysis revealed that gender, activities of daily living status, traditional Chinese family values, coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in activities of daily living or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden. The authors concluded that the findings should provide a basis for the development of interventions to minimise burden of family carers.
The impact of informal care-giving networks on adult children's care-giver burden
- Authors:
- TOLKACHEVA Natalia, et al
- Journal article citation:
- Ageing and Society, 31(1), January 2011, pp.34-51.
- Publisher:
- Cambridge University Press
The global need for care of older parents is growing. This study investigated how the characteristics of Dutch informal care-giving networks affected the adult child's care-giving burden. It used information on 602 informal care-givers from a 2007 study on care-givers who were assisting their older parents. Participants reported on parental and personal characteristics, care activities, experienced burden and characteristics of other informal care-givers. Findings revealed that adult children experienced lower care-giver burden when the informal care-giving network size was larger, when more types of tasks were shared across the network, when care was shared for a longer period, and when the adult child had no disagreements with the other members of the network. The authors concluded that being in an informal care-giving network will be of increasing benefit for adult children involved in long-term care. More care-givers will turn into managers of care, as they increasingly have to organise the sharing of care among informal helpers and mediate disagreements among members of the network.
Coping with dementia and older families of adults with Down syndrome
- Authors:
- JANICKI Matthew P., ZENDELL Anna, DEHAVEN Kathleen
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 9(3), August 2010, pp.391-407.
- Publisher:
- Sage
The study investigated a group of older carers of aging adults with Down syndrome (DS) to determine what effects such caregiving may have on them given the presence of dementia. The study also explored the comparative levels of care provided. Key signs were noted when decline was beginning – the subjective burden being experienced, and the key health factors when carers faced a changed level of care. Findings indicated that this group was made up of long-term, committed carers who have decided early on to look after their relative with DS over their lifetime. When faced the progression of dementia, their commitment was still apparent as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most participants saw a family or group home environment as the place of choice for their relative with DS when they decided they could no longer offer care. The study did not suggest any burn-out or significant health related problems associated with their continued caregiving.