Using meta‐ethnography to understand the emotional impact of caring for people with increasing cognitive impairment

Grose, Jane; Frost, Julia; Richardson, Janet; Skirton, Heather

doi:10.1111/j.1442-2018.2012.00727.x

Cited by 11 publications

(9 citation statements)

References 58 publications

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“…, Grose et al . ). Symptoms of HD and questions of inheritance are of such a nature that particular attention should be given to the caregiver's individual needs for support in different stages of the care‐giving course.…”

Section: Discussionmentioning

confidence: 97%

Balancing needs as a family caregiver in H untington's disease: a qualitative interview study

Røthing

Malterud

Frich

2014

Health Soc Care Community

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Family members in families with severe chronic disease play important roles in care‐giving. In families affected by Huntington's disease (HD), caregivers encounter practical and emotional challenges and distress. Enduring caregiver burdens may lead to problems and caregivers are in need of social support and health services to deal with challenges. We wanted to explore coping strategies and behaviour patterns used by family caregivers to care for themselves, while caring for a family member with HD. Participants were recruited from hospitals and community‐based healthcare. The sample represents experiences from care‐giving in all stages of the disease. We conducted semi‐structured interviews with 15 family caregivers in Norway. The transcribed material was analysed by use of systematic text condensation, a method for cross‐case thematic analysis of qualitative data. We found that family members used various coping strategies, adjusted to the stage and progression of HD. They tried to regulate information about the disease, balancing considerations for protection and disclosure, within and outside the family. The participants made efforts to maintain a balance between their own needs in everyday life and the need for care for affected family member(s). As the disease progressed, the balance was skewed, and the family caregivers' participation in social activities gradually decreased, resulting in experiences of isolation and frustration. In later stages of the disease, the need for care gradually overshadowed the caregivers' own activities, and they put their own life on hold. Health professionals and social workers should acknowledge that family caregivers balance their needs and considerations in coping with HD. They should, therefore, tailor healthcare services and social support to family caregivers' needs during the different stages of HD to improve caregivers' abilities to maintain some of their own activities, in balance with care‐giving.

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Section: Discussionmentioning

confidence: 97%

Balancing needs as a family caregiver in H untington's disease: a qualitative interview study

Røthing

Malterud

Frich

2014

Health Soc Care Community

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“…They then linked this objective measurement to the subjective evaluation of caregiver burden or strain noting that “the more the number of informal hours increases, the more the subjective burden is important” [ 2 ]. This is most evident where the person with dementia is exhibiting emotional difficulties and/or challenging behaviours [ 9 , 26 – 28 ].…”

Section: Discussionmentioning

confidence: 99%

Dementia Care: Intersecting Informal Family Care and Formal Care Systems

Singh¹,

Hussain

Khan

et al. 2014

Journal of Aging Research

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Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.

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“…The purpose of meta-ethnography is to identify where similar concepts and themes from different studies or papers refer to the same entity (congruent synthesis) or to opposing findings (refutational synthesis); this is referred to as the papers’ findings being ‘translated’ into each other [18, 46, 47]. Thus, as interpretations emerged, they were subject to systematic testing within and between the studies, and in consultation with a wider stakeholder group.…”

Section: Methodsmentioning

confidence: 99%

A qualitative synthesis of diabetes self-management strategies for long term medical outcomes and quality of life in the UK

Frost

Garside

Cooper

et al. 2014

BMC Health Serv Res

Self Cite

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BackgroundQualitative research on self-management for people with Type 2 Diabetes Mellitus (T2DM) has typically reported one-off retrospective accounts of individuals’ strategies. The aim of this research was to identify the ways in which self-management strategies are perceived by people with T2DM as being either supportive or unsupportive over time, by using qualitative findings from both longitudinal intervention studies and usual care.MethodsA systematic review of qualitative literature, published between 2000 and 2013, was conducted using a range of searching techniques. 1374 prospective qualitative papers describing patients’ experiences of self-management strategies for T2DM were identified and screened. Of the 98 papers describing qualitative research conducted in the UK, we identified 4 longitudinal studies (3 intervention studies, 1 study of usual care). Key concepts and themes were extracted, reviewed and synthesised using meta-ethnography techniques.ResultsAspects of self-management strategies in clinical trials (e.g. supported exercise regimens) can be perceived as enabling the control of biomarkers and facilitative of quality of life. In contrast, aspects of self-management strategies outwith trial conditions (e.g. self-monitoring) can be perceived of as negative influences on quality of life. For self-management strategies to be sustainable in the long term, patients require a sense of having a stake in their management that is appropriate for their beliefs and perceptions, timely information and support, and an overall sense of empowerment in managing their diabetes in relation to other aspects of their life. This enables participants to develop flexible diabetes management strategies that facilitate quality of life and long term medical outcomes.ConclusionsThis synthesis has explored how patients give meaning to the experiences of interventions for T2DM and subsequent attempts to balance biomarkers with quality of life in the long term. People with T2DM both construct and draw upon causal accounts as a resource, and a means to counter their inability to balance medical outcomes and quality of life. These accounts can be mediated by the provision of timely and tailored information and support over time, which can allow people to develop a flexible regimen that can facilitate both quality of life and medical outcomes.

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Using meta‐ethnography to understand the emotional impact of caring for people with increasing cognitive impairment

Cited by 11 publications

References 58 publications

Balancing needs as a family caregiver in H untington's disease: a qualitative interview study

Balancing needs as a family caregiver in H untington's disease: a qualitative interview study

Dementia Care: Intersecting Informal Family Care and Formal Care Systems

A qualitative synthesis of diabetes self-management strategies for long term medical outcomes and quality of life in the UK

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