Bastawrous M, Gignac MA, Kapral MK, Cameron JI Adult daughters providing post-stroke care to a parent: a qualitative study of the impact that role overload has on lifestyle, participation and family relationships. Clin Rehabil. 2015; 29:(6)592-600

Braun V, Clarke V Using thematic analysis in psychology. Qual Res Psychol. 2006; 3:(2)77-101

Cameron JI, O'Connell C, Foley N Canadian stroke best practice recommendations: managing transitions of care following stroke, guidelines update 2016. Int J Stroke. 2016; 11:(7)807-822

Cheng HY, Chair SY, Chau JP The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: a systematic review and meta-analysis. Patient Educ Couns. 2014; 95:(1)30-44

Denham AMJ, Wynne O, Baker AL, Spratt NJ, Loh M, Turner A, Magin P, Bonevski B The long-term unmet needs of informal carers of stroke survivors at home: a systematic review of qualitative and quantitative studies. Disabil Rehabil. 2022; 44:(1)1-12

Greenwood N, Mackenzie A, Cloud GC, Wilson N Informal carers of stroke survivors-factors influencing carers: a systematic review of quantitative studies. Disabil Rehabil. 2008; 30:(18)1329-1349

Greenwood N, Mackenzie A, Cloud GC, Wilson N Informal primary carers of stroke survivors living at home–challenges, satisfactions and coping:a systematic review of qualitative studies. Disabil Rehabil. 2009; 31:(5)337-351

Holloway I, Galvin KWest Sussex: Wiley Blackwell; 2017

Kokorelias KM, Lu FKT, Santos JR, Xu Y, Leung R, Cameron JI “Caregiving is a full-time job” impacting stroke caregivers’ health and well-being: a qualitative meta-synthesis. Health Soc Care Community. 2020; 28:(2)325-340

Lincoln NB, Kneebone II, Macniven JAB, Morris RCHoboken: John Wiley & Sons; 2011

Mackenzie A, Greenwood N Positive experiences of caregiving in stroke: a systematic review. Disabil Rehabil. 2012; 34:(17)1413-1422

Marczak J, Fernandez JL, Manthorpe J, Brimblecombe N, Moriarty J, Knapp M, Snell T How have the Care Act 2014 ambitions to support carers translated into local practice? Findings from a process evaluation study of local stakeholders’ perceptions of Care Act implementation. Health Soc Care Community. 2022; 30:(5)e1711-e1720

McKevitt C, Redfern J, Mold F, Wolfe C Qualitative studies of stroke: a systematic review. Stroke. 2004; 35:(6)1499-505

National Institute for Health and Care Research. 2014. (accessed 10 March 2022)

Silverman DLos Angeles: Sage; 2017

Social Care Institute for Excellence. 2021. (accessed 10 March 2022)

Stroke Foundation Australia. 2017. (accessed)

Stroke Association. 2022. (accessed 10 April 2022)

Torregosa MB, Sada R, Perez I Dealing with stroke: perspectives from stroke survivors and stroke caregivers from an underserved Hispanic community. Nurs Health Sci. 2018; 20:(3)361-369

UK Parliament. 2014. (accessed 10 April 2022)

van Swieten JC, Koudstaal PJ, Visser MC, Schouten HJ, van Gijn J Interobserver agreement for the assessment of handicap in stroke patients. Stroke. 1988; 19:(5)604-607

Zawawi NSM, Aziz NA, Fisher R, Ahmad K, Walker MF The unmet needs of stroke survivors and stroke caregivers: a systematic narrative review. Journal of Stroke and Cerebrovascular Diseases. 2020; 29:(8)

A different way of life: a qualitative study on the experiences of family caregivers of stroke survivors living at home

02 November 2022
Volume 27 · Issue 11



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).

Register now to continue reading

Thank you for visiting Community Nursing and reading some of our peer-reviewed resources for district and community nurses. To read more, please register today. You’ll enjoy the following great benefits:

What's included

  • Limited access to clinical or professional articles

  • New content and clinical newsletter updates each month