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What do people value when they provide unpaid care for an older person?: a meta-ethnography with interview follow-up
- Authors:
- AL-JANABI Hareth, COAST Joanna, FLYNN Terry N.
- Journal article citation:
- Social Science and Medicine, 67(1), July 2008, pp.111-121.
- Publisher:
- Elsevier
Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.
Day care study: carers' survey
- Author:
- COVENTRY. Social Services Department
- Publisher:
- Coventry. Social Services Department
- Publication year:
- 1989
- Pagination:
- 14p., tables.
- Place of publication:
- Coventry
As part of a review of day care, a survey was undertaken into carers' views of day care services provided by Coventry Social Services Department.
Social care for older people: the role and function of direct payments
- Author:
- DAVEY Vanessa
- Publisher:
- London School of Economics and Political Science
- Publication year:
- 2018
- Pagination:
- 290
- Place of publication:
- London
Direct payments (DPs) are now a core route for publicly funded social care provision in the UK. DPs are allocated to meet needs of social care recipients in lieu of community-managed social care services. DP recipients must organize their own care even if external support is usually available for some tasks. There are long-standing concerns about the benefits of direct payments for older people. Perceived risk factors include frailty, limited social networks, a lack of information technology skills, spouse co-morbidity, overburdened unpaid carers. Little is known about how direct payments actually work for older people. This thesis investigates direct payments practice, analysing newly collected and previous data from a variety of perspectives. First, a general view on policy and practice developments is obtained by tracing the evolution of DP support in the past decade. A bottom-up perspective follows, analysing interviews with 82 older people receiving DPs. The unprecedented detail given by this data permits the identification of factors associated with greater gain from DPs and exploration of how DP-care fits within pre-existing patterns of care, both formal and informal. Two particular phenomena highlight the unique role of DPs. The first is the role of husband and wife teams. In these husbands, affected by chronic physical illness, provide very substantial levels of unpaid care. As the term suggests, the couples operated DPs as a team: a mechanism which enhanced their ability to manage. Direct payments were critical to increase these couples' health and social capital. The second explores the circumstances of working unpaid carers managing DPs for older people. Overstretched and overburdened, these carers still found multiple benefits from DPs, not least the ability to coordinate care with their employment, ensuring the quality of services and with it their peace of mind. The work contributes to understanding how directing care through DPs fits in a continuum in which unpaid carers interact with formal care in any caregiving scenario. Directing care represents an additional phase in adaptation to dependence. Resilience is viewed as a confluence of individual, social, physical and environmental factors. For those with the most complex or precarious caregiving role, increased control may have the greatest benefits. (Edited publisher abstract)
Relational aspects of mastery for frail, older adults: the role of informal caregivers in the care process
- Authors:
- LAMBOTTE Deborah, et al
- Journal article citation:
- Health and Social Care in the Community, 27(3), 2019, pp.632-641.
- Publisher:
- Wiley
Frail, older care recipients are often thought of as individuals with a decreased mastery of everyday life skills. Various authors have proposed to acknowledge a relational dimension of mastery, defined as the ability to maintain control over one's life with the help of others. This study explores how frail, older adults experience relational aspects of mastery and the role of their informal caregivers in maintaining these aspects of mastery over the care process. Qualitative interviews (N = 121) were conducted in 2016 with potentially frail, community‐dwelling older adults participating in the Detection, Support and Care for Older people: Prevention and Empowerment (D‐SCOPE) project. A secondary analysis of 65 interviews reveals that, according to frail, older adults, informal caregivers contribute in various ways to the preservation of their mastery. This differs across the four elements of care: caring about (attentiveness), taking care of (responsibility), care‐giving (competence), and care‐receiving (responsiveness). However, in some cases, older adults experienced a loss of mastery; for example, when informal caregivers did not understand their care needs and did not involve them in the decision, organisation, and provision of care. A relational dimension of mastery needs to be acknowledged in frail, older care recipients since stimulating mastery is a crucial element for realising community care objectives and person‐centred and integrated care. (Edited publisher abstract)
Dementia cafes: recommendations from interviews with informal carers
- Authors:
- AKHTAR Farrukh, et al
- Journal article citation:
- Working with Older People, 21(4), 2017, pp.236-242.
- Publisher:
- Emerald
Purpose: Dementia cafes (also known as Alzheimer’s or memory cafes) have been running in the UK since 2000. The purpose of this paper is to report on the recommendations from recent research that interviewed family carers on their experiences of using the cafes. Design/methodology/approach: The research was carried out in cafes in and around London, and focussed on informal, unpaid carers’ experiences of using them. In total, 11 carers from five different dementia cafes were interviewed, using semi-structured questionnaires. The results were thematically analysed. Findings: The findings showed that carers had an overwhelming appreciation of the cafes and what they offered, but several of the findings led to the recommendations about the recruitment and training of cafe co-ordinators; how cafes present themselves and their services and how they can offer dedicated support to informal carers. Originality/value: These recommendations will be of use to cafe organisers and commissioners, especially considering the dearth of information currently available in this area. (Publisher abstract)
Family care-giving and decisions about entry to care: a rural perspective
- Authors:
- RYAN Assumpta, MCKENNA Hugh, SLEVIN Oliver
- Journal article citation:
- Ageing and Society, 32(1), January 2012, pp.1-18.
- Publisher:
- Cambridge University Press
This qualitative study undertaken in a large Health and Social Care Trust in Northern Ireland investigated rural family carers' experiences of the nursing home placement of an older relative. Semi-structured interviews were conducted with 29 relatives of nursing home residents. Findings revealed that older people had deep attachments to their homes and entry to care was a last resort. Rural family carers had close relationships with health and social care practitioners and felt supported in the decision-making process. The choice of home was a foregone conclusion for carers who had a strong sense of familiarity with the nursing homes in their area. This familiarity was influenced by the relatively rural communities in which respondents resided, which seemed to thrive in these small communities. This familiarity, in turn, influenced the choice of nursing home, timing of the placement and responses of family carers. The findings indicate that issues such as location and familiarity warrant a more detailed exploration in future research on entry to care.
Met and unmet needs, and satisfaction among social HMO members
- Authors:
- LEUTZ Walter, CAPITMAN John
- Journal article citation:
- Journal of Aging and Social Policy, 19(1), 2007, pp.1-19.
- Publisher:
- Routledge
- Place of publication:
- Philadelphia, USA
This study looks at elder Medicare beneficiaries who choose Social Health Maintenance Organisations (SHMOs) as a vehicle to obtain a coordinated acute care and community care benefits. This article reports on a survey of 800 members of four Social HMO demonstration sites, who were receiving home-based, community-based, and short-term institutional services under the demonstration's expanded community care benefits. The survey asked whether members needed help in 11 areas, whether they received help in each area from an informal caregiver, whether they wanted more help from the Social HMO, and whether help provided by both was adequate. Satisfaction with the program and with service coordination was also assessed. The adequacy of informal care differed by problem area, as did the help desired from the Social HMO and its responsiveness. Members were less satisfied when they had weaker informal care, were African American, and when they received inadequate help from the plan with Activities of Daily Living, transportation, medical access, and managing money. Members were more satisfied when they were professionals, home owners, knew their service coordinator's name (or how to contact her), and received help with their problems. The findings point to the importance of clarifying divisions of labour with informal caregivers, as well as possible expansions in responsibilities for service coordinators and benefits beyond traditional boundaries. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Stakeholder involvement in dementia research: a qualitative approach with healthy senior citizens and providers of dementia care in Germany
- Authors:
- KOWE Antonia, et al
- Journal article citation:
- Health and Social Care in the Community, 30(3), 2022, pp.908-917.
- Publisher:
- Wiley
Engaging stakeholders in health-related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups of dementia care in research priority setting and how they would want to be involved in dementia research. Group discussions were carried out with 47 participants divided into two groups: (a) healthy senior citizens and (b) providers of dementia care. Ensuing responses were analysed using descriptive content analysis. The main research interest of both groups was similar, but senior citizens and providers of dementia care varied in how they perceived the roles of researchers and stakeholders involved. Groups also differed with respect to the amount of time they would be willing to invest into research. The results contribute to our knowledge of group-specific stakeholder priorities and attitudes regarding participatory involvement in dementia research. (Edited publisher abstract)
‘The Future is Probably Now’: Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers
- Authors:
- IM Jennifer, et al
- Journal article citation:
- Health Expectations, 22(6), 2019, pp.1331-1340. Online only
- Publisher:
- Wiley
Background: Earlier end‐of‐life communication is critical for people with heart failure given the uncertainty and high‐risk of mortality in illness. Despite this, end‐of‐life communication is uncommon in heart failure. Left unaddressed, lack of end‐of‐life discussions can lead to discordant care at the end of life. Objective: This study explores patients' and caregivers’ understanding of illness, experiences of uncertainty, and perceptions of end‐of‐life discussions in advanced illness. Design: Interpretive descriptive qualitative study of older adults with heart failure and family caregivers. Fourteen semi‐structured interviews were conducted with 19 participants in Ontario, Canada. Interviews were transcribed verbatim and content analysis was used to analyse the data. Main results: Understanding of illness was shaped by participants’ illness‐related experiences (e.g. symptoms, hospitalizations and self‐care routines) and the ability to adapt to challenges of illness. Participants were knowledgeable of heart failure management, and yet, were limited in their understanding of the consequences of illness. Participants adapted to the challenges of illness which appeared to influence their perception of overall health. Uncertainty reflected participants’ inability to connect manifestations of heart failure as part of the progression of illness towards the end of life. Most participants had not engaged in prior end‐of‐life discussions. Conclusion: Detailed knowledge of heart failure management does not necessarily translate to an understanding of the consequences of illness. The ability to adapt to illness‐related challenges may delay older adults and family caregivers from engaging in end‐of‐life discussions. Future research is needed to examine the impact of addressing the consequences of illness in facilitating earlier end‐of‐life communication. (Edited publisher abstract)
Care arrangements of older adults: what they prefer, what they have, and implications for quality of life
- Authors:
- KASPER Judith D., WOLFF Jennifer L., SKEHAN Maureen
- Journal article citation:
- Gerontologist, 59(5), 2019, pp.845-855.
- Publisher:
- Oxford University Press
Background and Objectives: Meeting individual preferences for long-term services and supports (LTSS) is a policy priority that has implications for quality of care. Evidence regarding preferences is sparse. In addition, little is known regarding whether preferences and care arrangements match for those receiving care, and implications for quality of life. Research Design and Methods: A random sample (n = 1,783 in 2012) of National Health and Aging Trends Study participants were asked the best care option for someone 80+ who needs help with personal care and mobility. Analyses examine variations in care preferences, the relationship of preferences to care arrangements, and the association of matched preference and care arrangements to quality of life indicators. Results: Care preferences vary by demographics. Equal proportions (3 in 10) of older adults chose assisted living or continuing care retirement communities (CCRC), care in own home with family help, and care in own home with paid help, as the best options. Persons in assisted living/CCRC settings were significantly more likely to choose this option as best. Only 1 in 3 older persons receiving care are in arrangements that match preferences. No association with quality of life indicators was found. Discussion and Implications: Aging in place remains the care preference of a majority, but close to one-third chose assisted living/CCRC, suggesting preferences are evolving. Aligning care preferences and arrangements is a policy goal, but many do not achieve a match and there remain gaps in understanding trajectories in preferences and care arrangements and implications for quality of life. (Edited publisher abstract)