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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.

ABSTRACT: OBJECTIVES:Older 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. DESIGN:Qualitative with four focus groups. SETTING:Greater London, UK. PARTICIPANTS:28 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. FINDINGS:Thematic 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. CONCLUSIONS:Services 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.

SUBMITTER: Greenwood N

PROVIDER: S-EPMC6731855 | biostudies-other | 2019 Sep

REPOSITORIES: biostudies-other

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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.

Greenwood Nan N Pound Carole C Brearley Sally S

BMJ open 20190903 8

<h4>Objectives</h4>Older 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.<h4>Design</h4>Qualitative with four focus groups.<h4>Setting</h4>Greater London, UK.<h4>Participants</h4>28 older carers (70+ years) ...[more]

PMID: 31481376

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Project description:BackgroundProviding unpaid support to family and friends with disabling health conditions can limit a carer's capacity to participate in employment. The emotional support needs and unpredictability of caring for people with mental illness may be particularly demanding. While previous research suggests variable employment rates across carers for different conditions, there are limited data on mental health carers specifically.MethodsThis study analysed employment patterns for working-age, co-resident carers of adults with mental illness in an Australian cross-sectional household survey, the 2015 Survey of Disability, Ageing and Carers.ResultsSignificantly more mental health carers were not employed (42.3%, 95% CI: 36.6-48.1) compared to non-carers (24.0%, 95% CI: 23.5-24.6). Employed mental health carers were more likely to work fewer than 16 h per week (carers: 17.2%, 95% CI: 12.8-22.8, vs. non-carers: 11.7%, 95% CI: 11.3-12.1) and in lower skilled occupations (carers: 22.6, 95% CI: 17.5-28.7, vs. non-carers: 15.7, 95% CI: 15.1-16.2). Among the sub-group of primary mental health carers, 25.8% (95% CI: 15.6-39.5) had reduced their working hours to care and a further 26.4% (95% CI: 17.2-38.2) stopped working altogether. In corresponding comparisons between mental health carers and carers for people with other cognitive/behavioural conditions, and physical conditions with or without secondary mental illness, there were no differences except that mental health carers were more likely to be working in a lower skilled occupation than other cognitive/behavioural condition carers (14.8% of the latter, 95% CI 10.1-21.2). Multivariate logistic regression analyses revealed that female mental health carers were less likely to be employed if they were aged 35-54, had no post-secondary education, had a disability, or cared for someone with severe activity limitations. For male mental health carers, having a disability or caring for someone with severe limitations or who did not receive paid assistance were significantly associated with not being employed.ConclusionsThese results highlight the employment disadvantage experienced by mental health carers compared to non-carers, and similarities in employment patterns across carers for different conditions. Improving the availability of paid support services for people with mental illness may be an important target to assist carers to maintain their own employment.

Project description:ObjectivesTo identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic.DesignA qualitative systematic literature review.Data sourcesEight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources.Study selectionEligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English.Data extraction and synthesisRetrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings.ResultsFourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers' wellbeing and ability to cope.ConclusionCarers' needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review.

Project description:Background: The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all. Methods: This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis. Results: Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management. Conclusions: This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.

Project description:BackgroundMusic therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement).MethodsEligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration.ResultsA total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes.ConclusionsQualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs.Systematic review pre-registrationPROSPERO [CRD42021244859].

Dataset Information

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

Publications

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

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