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The use of control - the actions of informal carers on those at risk from falling at home. A qualitative study
- Authors:
- LEES Carolyn, O'BRIEN Thomas, MAGANARIS Constantinos
- Journal article citation:
- Health and Social Care in the Community, 30(3), 2022, pp.1045-1050.
- Publisher:
- Wiley
To explore the experiences of informal carers who provide care for frail, older adults who are at risk from falling in their own home. Frail, older adults who fall present a significant challenge for their careers and the health and social care services that support them. Falls can often mean long stays in acute hospital facilities or admission to care homes. Research studies have often investigated the cause and effect of falls in relation to risk, but there has been a limited amount of insight into how informal carers manage those who are at risk from falling in their own home. A qualitative study that used thematic analysis was adopted. Ten informal carers participated in the study. Data were collected via one to one, semi structured interviews in the care recipient's home from February to May 2019. The study applied the COREQ research checklist. Findings highlight that informal carers believed that once a fall had occurred, further falls were inevitable and that falls prevention interventions were of little value. To prevent falls, informal carers would restrict the activity of the care recipient as well as controlling both the environment and the care recipient's movements. A better understanding of the use of control and monitoring of care recipients by informal carers is important. This knowledge will enable the delivery of falls prevention interventions for the frail, adult population that are effective, appropriate and promote the delivery of evidence-based care. (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)
Linkages between informal and formal care-givers in home-care networks of frail older adults
- Authors:
- JACOBS Marianne T., et al
- Journal article citation:
- Ageing and Society, 36(8), 2016, pp.1604-1624.
- Publisher:
- Cambridge University Press
In ageing societies, policy makers aim for more contact between informal and formal care-givers as it may enhance the quality of care. So far, the linkage between formal and informal care-givers is generally studied from a one-sided or a single dyadic perspective, without taking into account that care networks of community-dwelling older adults often exist of multiple informal and formal care-givers. The current study examines discussion of care between all potential informal–formal care-giver dyads in a care network, and relates this to characteristics of the older care recipient, the care network and the care-givers. Seventy-four Dutch older care recipients provided information on all care-givers who helped with five different types of tasks; 410 care-givers reported on the contact between all care-givers identified. Multi-level logistic regression was conducted in 2,150 informal–formal care-giver dyads and revealed that in 26 per cent of all these dyads discussion on care occurred. This was more likely when both care-givers performed multiple types of tasks, the informal care-giver was residing with the care recipient, and contact within the formal and the informal sub-network was higher. To enhance discussion of care between informal and formal care-givers in care networks where no discussion occurs at all, home-care organisations may need to allocate formal care-givers who form a bridge with an extra-residential care-giver of care recipients living alone. (Publisher abstract)
Childlessness at the end of life: evidence from rural Wales
- Author:
- WENGER G. Clare
- Journal article citation:
- Ageing and Society, 29(8), November 2009, pp.1243-1259.
- Publisher:
- Cambridge University Press
When the frailties of advanced old age result in the need for help, after the spouse, adult children are the most important source of support. Despite developing closer relationships with next-of-kin or non-kin, older childless people in times of need are socially vulnerable and in need of more formal support services. Using data from the 1979-1999 Bangor Longitudinal Study of Ageing, the author explores the effects of childlessness on adults aged 65 or more, at the start of the study, for twenty years. Generally, childless people in old age had expectations consistent with being childfree, had developed closer relationships with next-of-kin and friends and placed a high value on independence. Marital status, gender, and wealth, in terms of social as well as financial capital were all important variables. In some cases expectations of inheritance were clearly associated with support received. It was noted however that unless death was sudden or after a short, acute illness, almost all childless people entered residential care or a long stay hospital at the close of their lives.
The long-term care mix in Austria: an overview of community-based care provision by formal and informal caregivers
- Authors:
- lINCA Stefania, RODRIGUES Ricardo
- Publisher:
- European Centre for Social Welfare Policy and Research
- Publication year:
- 2019
- Pagination:
- 12
- Place of publication:
- Vienna
This Policy Brief provides insights into the individual characteristics associated with the use of formal, informal and mixed care by older Austrians living in the community. These are instrumental in understanding how care services can be structured to best complement informal care provision and respond to care users’ needs, as well as how long-term care policies can be expected to impact different care users and caregivers’ groups. The Brief shows that while informal support still accounts for the majority of provided care, the supply of formal services has been constantly increasing, serving primarily very old individuals, those with higher support needs and women. Large gender differences in care use patterns are still observed in Austria and particularly pronounced among married and co-habiting older people. (Edited publisher abstract)
Caregivers for people at end of life in advanced age: knowing, doing and negotiating care
- Authors:
- WILES Janine, et al
- Journal article citation:
- Age and Ageing, 47(6), 2018, pp.887-895.
- Publisher:
- Oxford University Press
Background: the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them. Design and setting: people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3–6 months after an older person’s death and invited to take part in the current study. Subjects: fifty-eight interviews were conducted with carers of 52 people in advanced age, 20 Maori and 32 non-Maori. The majority of the 58 carers were in their 60 s and were women. Methods: guided-conversation interviews covered end of life preferences and experiences, needs and gaps in support, arrangements after death, and experiences of bereavement. Rigorous data analysis included multiple researchers identifying and interrogating themes across and within: the transcripts, and feedback and discussion with participants. Results: we identify a typology of nine categories of care, and argue that the support and care provided by family should be understood as going beyond simple task-based transactions. We present a model of end of life care describing and explaining inter-related aspects of knowing, doing and negotiating care tasks. Conclusions: this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age. (Edited publisher abstract)
Care and support for older adults in the Netherlands living independently
- Authors:
- VERVER Didi, et al
- Journal article citation:
- Health and Social Care in the Community, 26(3), 2018, pp.e404-e414.
- Publisher:
- Wiley
The growth in the numbers of older adults needing long‐term care has resulted in rising costs which have forced the Dutch government to change its long‐term care system. Now, the local authorities have greater responsibility for supporting older adults and in prolonging independent living with increased support provided by the social network. However, it is unclear whether these older adults have such a network to rely upon. The objective of this study was to gain insight into the providers of formal and informal care to older adults, and to assess possible differences between older adults who are frail and those who are not. In addition, their care and support needs were investigated. Data was collected from a quantitative survey using a cross‐sectional design in different regions of the Netherlands from July until September 2014 (n = 181). Frailty was measured using the Tilburg Frailty indicator. To analyse the data chi‐square tests, crosstabs and odds ratios were used for dichotomous data and the Mann–Whitney U‐Test for nominal data. The number of formal care providers involved was significantly higher (median = 2) for those deemed frail than for those not deemed frail (median = 1), U = 2,130, p < .005. However, more than one‐third of the respondents deemed frail did not get the care or support they needed (33.7%). There was a significant positive association between being frail and having an informal care provider (χ2 = 18.78, df = 1, p < .005). However, more than one‐third of those deemed frail did not have an informal care provider (36.8%). One‐third of older adults deemed to be frail did not have their needs sufficiently addressed by their care network. For a substantial part of this group of older adults, the informal network seems to be unable to support them sufficiently. Additional attention for their needs and wishes is required to implement the policy reforms successfully. (Edited publisher abstract)
Formal and informal care for community‐dwelling frail elderly people over time: a comparison of integrated and usual care in the Netherlands
- Authors:
- JANSE Benjamin, et al
- Journal article citation:
- Health and Social Care in the Community, 26(2), 2018, pp.e280-e290.
- Publisher:
- Wiley
While integration has become a central tenet of community‐based care for frail elderly people, little is known about its impact on formal and informal care and their dynamics over time. The aim of this study was therefore to examine how an integrated care intervention for community‐dwelling frail elderly people affects the amount and type of formal and informal care over 12 months as compared to usual care. A quasi‐experimental design with a control group was used. Data regarding formal and informal care were collected from frail elderly patients (n = 207) and informal caregivers (n = 74) with pre/post‐questionnaires. Within‐ and between‐group comparisons and multiple linear regression analyses were performed. The results showed marginal changes over time in the amount of formal and informal care in both integrated care and usual care. However, different associations between changes in formal and informal care were found in integrated and usual care. Most notably, informal caregivers provided more instrumental assistance over time if formal caregivers provided less personal care (and vice versa) in integrated care but not in usual care. These results suggest that integrated care does not necessarily change the contribution of formal or informal care, but changes the interaction between formal (personal care) and informal (instrumental) activities. Implications and recommendations for research and practice are discussed. Trial registration: Current Controlled Trials ISRNT05748494. (Publisher abstract)
A systematic review of questionnaires used to measure the time spent on family care for frail older people
- Authors:
- CES Sophie, et al
- Journal article citation:
- International Journal of Care and Caring, 1(2), 2017, pp.227-245.
- Publisher:
- Policy Press
Time spent on family care of frail older people is difficult to substantiate because of its complex nature. The aim of this study is to check the content validity of existing questionnaires measuring the time spent on caring. Comparing the activities mentioned in the questionnaires with those from other data sources (three validated scales measuring the functional limitations in day-to-day activities and a qualitative study) enabled identification of important drawbacks in the questionnaires reviewed. A comprehensive list of activities was built in order to help future researchers to conduct effective data collection and thereby enable an in-depth analysis of family care supply. (Publisher abstract)
Caring into later life: the growing pressures on older carers
- Authors:
- CARERS UK, AGE UK
- Publisher:
- Carers UK
- Publication year:
- 2015
- Pagination:
- 28
- Place of publication:
- London
Draws together and analyses evidence from national data sources and older carers themselves to set out key facts about older carers and identify what steps should be taken to better support them. Information is provided on the numbers of older carers, older carers demographics, the hours and type of support older carers provide, health and wellbeing, and access to NHS and social care services. Quotations from older carers are also included, drawn from Carers UK’s State of Caring Survey 2014. The report found that there are 1.2 million carers aged 65 and over in England, with a growing number of older carers aged over 85 years. Of those carers over 85 years: over half are caring for 50 or more hours each week; 59% are men (whereas only 42% of all carers are men); and 48% of carers aged 85 and over who are providing 20 or more hours of care a week say that they feel anxious or depressed. The report makes a number of recommendations, including: using the new duties of the Care Act to develop advice and information that is accessible to older carers; involving older carers in co-producing and commissioning support services; the provision of good quality care services to support carers who wish to continue working, and for national and local government to address older carers' emotional health and wellbeing. Data sources used for the report include Carers UK’s State of Caring Survey 2014, the 2001 and 2011 Census, and GP Patient Survey. (Edited publisher abstract)