Informal primary carers of stroke survivors living at home–challenges, satisfactions and coping: A systematic review of qualitative studies

Abstract

Qualitative studies add significantly to our understanding of carers' experiences. Caring for stroke survivors is often challenging but focusing on the difficulties and not drawing attention to successful management strategies and satisfaction reported by carers, limits understanding and reduces the chances of providing appropriate support. Future qualitative research should consider the implications of the timing of collection more carefully and should move away from simple content or thematic analysis which tends to emphasize similarities amongst carers and should now focus on understanding carer diversity. Acknowledging this diversity should maximize the chances of providing appropriate support.

The everyday life of adult family members of working aged survivors of stroke during the first year after the stroke – an integrative review

“…According to the results of this review, being able to care for their loved one gave strength to the family members. Greenwood et al [64] got the same kind of results in their study, where the family members experienced satisfaction through caring for their loved one. The health condition of the family member affects depression [59][60][61] .…”

“…The family members attempt to control their lives in the shadow of the illness, although they face many challenges, not the least of which is insecurity about the future. The complex array of needs surrounding the stroke survivor's life were also found in the research of Cameron and Gignac [63] , Greenwood, Mackenzie, Cloud & Wilson [64] , and MacIsaac, Harrison & Godfrey [37] . Caregivers' need for information was mostly reported by new caregivers of stroke patients in the research of MacIsaac et al [37] .…”

The human dimensions of post-stroke homecare: experiences of older carers from diverse ethnic groups

“…Carers report insufficient information and training about stroke and stroke care services, particularly post-discharge from acute settings [17,22]. High levels of anxiety and stress are commonplace as carers deal on a long-term basis with change and uncertainty [19,23]. Carers also face major role and identity changes [24,25] and many spousal carers describe feeling trapped at home as they suppress their own needs, often adopting hyper-vigilant behaviours as a way to manage their caring situation [26].…”

“…Many long-term carers of people with stroke perceive that the pressures of caring increase rather than diminish over time [16,17]. Systematic reviews of qualitative and quantitative studies of caring after stroke highlight a range of recurring issues and coping challenges [18][19][20]. These support needs are common across countries and care systems [21].…”

British Indian carers of stroke survivors experience higher levels of anxiety and depression than White British carers: findings of a prospective observational study

“…More than 900,000 people are currently living with the effects of stroke (National Audit Office, 2006), and up to 80% of survivors rely on informal carers (Anderson et al, 1995). Although there may be positive aspects to caring, (Kinney et al, 1995;Chappell and Dujela 2008;Greenwood et al, 2009), there are also significant burdens (Chappell and Dujela, 2008;Greenwood et al, 2009). In addition to the primary impact of stroke, survivors may suffer from a number of physical and psychosocial complications, including immobility, falls, incontinence, cognitive impairment, and depression (Davenport et al, 1996).…”