The Human Occupational Impact of Partner and Close Family Caregiving in Dementia: A Meta-Synthesis of the Qualitative Research, Using a Bespoke Quality Appraisal Tool

Yong, Audrey Su Lin; Price, Lee

doi:10.4276/030802214x14071472109879

Cited by 9 publications

(10 citation statements)

References 25 publications

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“…It is encouraging to note, however, that qualitative meta-syntheses of the impact of informal caregiving across conditions are beginning to be published. For example, Yong and Price (2014) have recently conducted a comprehensive meta-synthesis of qualitative studies on family caregiving in dementia exploring the occupational impact of dementia caregiving on carers. Although we cannot directly compare their findings to our own (as our review is focused specifically on MS and explored the impact of caregiving from a multidimensional perspective) we consider reviews such as Yong & Price's important for adding to our holistic understanding of the impact of caregiving and the multitude of ways this role can impact on the carer.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research

Topcu

Buchanan

Aubeeluck

et al. 2016

Psychology & Health

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Objective: The lack of adequate conceptualisation and operationalisation of quality of life (QoL) limits the ability to have a consistent body of evidence to improve QoL research and practice in informal caregiving for people with Multiple Sclerosis (MS).Thus, we conducted a meta-synthesis of qualitative research to improve the conceptual understanding of the experiences of MS carers and to identify factors that affect carers' QoL.Design: Systematic searches of five electronic databases yielded 17 qualitative studies which were synthesised using the principles of meta-ethnography.Results: The synthesis resulted in 9 inter-linking themes: Changes and losses; challenges revolving around MS; caregiving demands; burden of care; future concerns; external stressors; experiences of support; strategies used in managing the caregiving role; and motivating factors. Our findings suggest that MS carers can have both positive and negative experiences which may bring challenges and rewards to the carers.Conclusion: We present a proposed QoL model for MS caregiving which can be used to inform the development of interventions for MS carers to improve their QoL.However, further empirical research is needed to examine the utility of this model and to explore the concept of QoL in MS carers in more detail.Keywords: informal carers; meta-ethnography; meta-synthesis; multiple sclerosis; quality of life Multiple Sclerosis (MS) is one of the most common chronic neurodegenerative diseases among adults, globally affecting approximately 2.3 million individuals (Multiple Sclerosis International Federation [MSIF], 2013). MS has an extremely variable progression, with some patients showing a steady rapid deterioration (i.e. primary progressive course), and most experiencing unpredictable exacerbations and remissions of symptoms (i.e. relapsingremitting course; Mohr et al., 1999). 3In the later stages of MS and at times of exacerbations, people with MS (pwMS) cannot manage daily living activities by themselves and can become functionally dependent on others. Generally, it is the immediate family members (e.g. spouse) or friends who take on the responsibility of caring for pwMS (Forbes, While, & Mathes, 2007), and are commonly referred to as 'carers' or 'caregivers'. A carer is someone who provides a significant amount of voluntary unpaid support and help to a friend, relative, or a neighbour, who suffers from an illness, disability, frailty, mental health problem, or addiction (Carers Trust, 2012;Carers UK, 2015; Department of Health [DoH], 2014). The word 'informal' is commonly used to distinguish voluntary unpaid carers from health professionals or care workers who get paid for providing care.As a result of the progressive, unstable and unpredictable nature of MS, caring for pwMS causes high levels of carer burden and is recognised as a potential threat to caregivers' health and well-being (Corry & While, 2009;Devins, Seland, Klein, Edworthy, & Saary, 1993). Indeed, there is consistent evidence in the current literature that overall qual...

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Section: Strengths and Limitationsmentioning

confidence: 99%

Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research

Topcu

Buchanan

Aubeeluck

et al. 2016

Psychology & Health

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“…These were interventions that could be carried out by any professional group. This is corroborated by two further reviews (Hooper and Collins, 2016; Yong and Price, 2014), both of which suggested that occupational therapists could offer interventions to achieve better outcomes for family caregivers and their loved ones.…”

Section: Literature Reviewmentioning

confidence: 70%

“…The UK Prime Minister’s ‘Challenge on Dementia 2020’ (Department of Health UK (DoH), 2015) called for people with dementia and their caregivers to be supported as long as possible in the community before entering formal care. It is acknowledged, however, that each family or partner journey is unique and individuals will experience considerable challenges and constant adaptation throughout the illness trajectory (Yong and Price, 2014). It is therefore important to understand the family caregiver perspective as the intense demands or burden of caring can affect the quality of care and increase the likelihood of the person with dementia entering into formal care (Hall and Skelton, 2012).…”

Section: Introductionmentioning

confidence: 99%

Supporting sustainable occupational lives for partner caregivers of people with dementia

Yong

Price

Napier

et al. 2020

British Journal of Occupational Therapy

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Introduction This qualitative research explores the experience of partner caregivers and how their partner’s dementia impacts on their daily living and occupational lives, with the aim of informing the sustainability of homecare and decreasing the likelihood of formal care. Method Ten participants were recruited through Alzheimer’s Society groups. They were interviewed using the same semi-structured interview process and asked questions about their daily activities and caregiving role. The data was analysed using Braun and Clarke’s thematic analysis process and themes generated using inductive coding and reasoning. Findings Three main themes were identified: (1) losing occupational activities and roles; (2) adapting to a new occupational life and (3) adjusting to a new relationship in the trajectory of their partner’s illness. Conclusion This study highlights the complex occupational challenges experienced by partner caregivers of people with dementia. It suggests that there is a role for occupational therapists in sustaining homecare by working with partner caregivers as ‘expert service users’. Involvement should be provided at critical points of the caregiving journey and include co-creating technology solutions for social inclusion, sustaining adaptive engagement in personal occupations, creating opportunities for restoration and supporting caregivers to preserve their partner’s personhood.

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“…A data extraction template was developed in order to support the thematic nature of the review. Thematic reviews use a conceptual framework to provide a lens through which to explore the literature (Yong & Price, 2014) and within the present review, the conceptual framework of occupation as a dynamic synthesis of doing–being–becoming–belonging (Wilcock, 1998; and also Rebeiro et al., 2001) was chosen to frame the analysis. The benefits of using this framework are twofold: providing a novel approach to exploring the occupational experience of dementia caregivers, and establishing whether this is a credible framework for this purpose (Noyes & Lewin, 2011).…”

Section: Methodsmentioning

confidence: 99%

“…This may result in decreased participation in meaningful occupations, threats to wellbeing and loss of occupational balance (Hwang, Rivas, Fremming, Rivas, & Crane, 2009). Systematic reviews of multi-disciplinary literature within an occupational therapy framework have additionally demonstrated that the notions of perceived responsibility and occupational adaptation are key factors in determining the wellbeing of caregivers (Thinnes & Padilla, 2011; Yong & Price, 2014).…”

Section: Introductionmentioning

confidence: 99%

An occupational perspective of the lived experience of familial dementia caregivers: A thematic review of qualitative literature

Hooper

Collins

2016

Dementia

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Dementia caregiving is thought to have a negative impact on health and wellbeing. This critical review of qualitative literature explored the lived experience of familial dementia caregivers from an occupational therapy perspective. The method was informed by systematic review and qualitative research methodologies and was structured within the occupational dimensions framework of doing-being-becoming-belonging. A comprehensive search of major databases was undertaken which identified 484 studies on the topic; 14 met the inclusion criteria and were included in the review. Ten themes emerged within the doing-being-becoming-belonging framework from the analysis of the studies. The occupational participation of caregivers is conveyed within the 'doing' domain. Ways in which caregiving impacts upon opportunities for self-nurture are presented within the 'being' domain. The 'becoming' domain elucidates ways in which caregivers redefine themselves, their values and their priorities through their caregiving role. The 'belonging' domain depicts ways in which caregivers' connections with their care recipient and others are shaped over time. Practice implications for health and social care practitioners who work with familial dementia caregivers are presented in light of the findings.

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The Human Occupational Impact of Partner and Close Family Caregiving in Dementia: A Meta-Synthesis of the Qualitative Research, Using a Bespoke Quality Appraisal Tool

Cited by 9 publications

References 25 publications

Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research

Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research

Supporting sustainable occupational lives for partner caregivers of people with dementia

An occupational perspective of the lived experience of familial dementia caregivers: A thematic review of qualitative literature

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