A different way of life: a qualitative study on the experiences of family caregivers of stroke survivors living at home
There are approximately 1.3 million stroke survivors in the UK, with the majority of them relying on family caregivers for support. However, the needs of family caregivers are not routinely assessed by most services. The aim of this study was to explore the experiences of stroke family caregivers following the implementation of the Care Act, 2014. A total of 16 semi-structured, digitally recorded face-to-face qualitative interviews were conducted with a purposive sample of stroke family caregivers in north-west England. Thematic analysis was undertaken. Two themes were identified: the effects of caregiving and the unmet needs of the family caregivers. Despite changes to legislation, family caregivers of stroke survivors continue to experience challenges, such as financial problems, information needs, and a lack of respite and emotional support when providing care. Existing approaches to identifying and supporting caregiver needs are insufficient. Proactive approaches are required to ensure the needs of family caregivers are identified and addressed on a regular basis.
In the UK, there are 1.3 million stroke survivors (Stroke Association, 2022). Stroke is the fourth leading cause of death and the largest cause of adult disability, with two-thirds of survivors leaving hospital with a disability (Royal College of Physicians, 2017). To continue living independently at home, those stroke survivors leaving hospital with a disability often require care, which in many cases is permanent and usually provided by family members and friends (Intercollegiate Stroke Working Party (ISWP), 2016). The sudden onset of a stroke, plus its unpredictable recovery, makes it difficult for family members to adjust in to their caregiving role (Lincoln et al, 2011). Numerous systematic reviews have focused on a range of negative experiences and outcomes encountered by family caregivers of stroke survivors, such as information needs, lack of emotional support, caregiver burden, financial problems and not feeling prepared for their role (McKevitt et al, 2004; Greenwood et al, 2008; 2009; Kokorelias et al, 2020; Zawawi et al, 2020; Denham et al, 2022). However, evidence also suggests some positive outcomes from the family caregiver role, such as strengthened relationships and a sense of fulfilment (Mackenzie and Greenwood, 2012).
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