A qualitative study of older informal carers’ experiences and perceptions of their caring role

Greenwood, Nan; Pound, Carole; Brearley, Sally; Smith, Raymond L.

doi:10.1016/j.maturitas.2019.03.006

Cited by 68 publications

(69 citation statements)

References 22 publications

(29 reference statements)

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“…There is a sense of needing to own responsibility in all the review papers. Evidence suggests that older carers are reluctant to seek support, citing reasons including pride, duty and the belief that they are not entitled to receive help (Greenwood et al 2019). This indicates the requirement to incorporate a holistic approach to carer's needs and work in collaboration with them (Bull 2014).…”

Section: Discussionmentioning

confidence: 99%

What is an older husband’s experience of caring for his wife who has dementia?

Nel

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2019

Nursing Older People

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There are a significant number of informal carers looking after people who have dementia. Women's caregiving experiences are well documented. However, there is a substantially smaller amount of research specifically investigating the male carer perspective. This literature review considers older husbands' perceptions of supporting their wives who have dementia. The findings suggest that husbands are committed to their caregiving role but can feel socially isolated. The caregiving role of older men has altered the dynamic within the marriage. Husbands continue to show commitment towards their spouses but feel that male-only support groups could offer some respite from their responsibilities. Nurses need to take time to listen to husband's experiences, offering emotional support and signposting them to other services that can offer assistance. Further research on the long-term effects and support needs of older male carers is needed.

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Section: Discussionmentioning

confidence: 99%

What is an older husband’s experience of caring for his wife who has dementia?

Nel

Board

2019

Nursing Older People

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“…The primary focus of the project was identified in our earlier research5 6 with older carers and was based on their experiences. These carers identified the topic as a research priority.…”

Section: Methodsmentioning

confidence: 99%

“…Recent research5 6 with older carers has highlighted considerable anxiety about who will care for those they support if they are unable to continue caring through illness or death. The same research identified this topic as a research priority both from the perspectives of carers themselves and professionals and volunteers supporting them.…”

Section: Introductionmentioning

confidence: 99%

“…The same research identified this topic as a research priority both from the perspectives of carers themselves and professionals and volunteers supporting them. This concern applied to both carers of middle-aged and older adult children with disabilities and those supporting similar age spouses with conditions such as dementia or severe mental illnesses 5 6. Previous research7–12 looking into this issue has tended to focus on carers of adults with learning disabilities and often includes carers who are parents or siblings.…”

Section: Introductionmentioning

confidence: 99%

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‘What happens when I can no longer care?’ Informal carers’ concerns about facing their own illness or death: a qualitative focus group study

2019

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ObjectivesOlder informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring.DesignQualitative with four focus groups.SettingGreater London, UK.Participants28 older carers (70+ years) recruited from the voluntary sector participated in this study. Most were women and many were spouses caring for partners with age-related conditions such as dementia, arthritis and visual impairment. Nearly a third were parents of adult children with severe physical or cognitive disabilities.FindingsThematic analysis identified two main aspects for carers when contemplating the future—when they are unable to care in the short term or long term if they die or can no longer manage. Themes included the following: the impact of age, health conditions and relationships on future planning; anxiety about future care; carers’ ambivalence and challenges in broaching the subject; interventions that might help older carers talk about and plan for the future of those they care for.ConclusionsServices need to be open to talking about this difficult topic. Our findings suggest that frank discussions about when older carers cannot care and having plans in place, whether these are financial or address other practical issues, makes it easier for all concerned. However, this issue is not easily broached and its timing and ways to access this support must be carefully and individually gauged. Future research with more diverse demographic groups is needed to improve understanding of these carers’ perspectives. Research is also needed to develop interventions to support older carers to talk about and plan for the future.

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“…It was piloted with one of the panel members and was found to work well according to the purpose. The interview-guide was finally informed by previous research about family carers and dementia care [5,25,[48][49][50][51][52]. Given the hermeneutic and phenomenological approach, the topic guide consisted of open questions about subjective experiences.…”

Section: Designmentioning

confidence: 99%

Family carers’ involvement strategies in response to sub-optimal health services to older adults living with dementia – a qualitative study

2020

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Background: While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities. Methods: Qualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audiorecorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology. Results: Two main involvement strategies were identified: 1) being "the hub in the wheel" and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers' weighing conflicting concerns and perceived costs and benefits. Conclusions: Awareness and acknowledgment of family carers' strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers' own perspectives on carer involvement is a necessary precursor to developing good care partnerships.

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A qualitative study of older informal carers’ experiences and perceptions of their caring role

Cited by 68 publications

References 22 publications

What is an older husband’s experience of caring for his wife who has dementia?

What is an older husband’s experience of caring for his wife who has dementia?

‘What happens when I can no longer care?’ Informal carers’ concerns about facing their own illness or death: a qualitative focus group study

Family carers’ involvement strategies in response to sub-optimal health services to older adults living with dementia – a qualitative study

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