Navigating stroke care: the experiences of younger stroke survivors

Abstract

Purpose: Although stroke is associated with ageing, a significant proportion of strokes occur in younger people. Younger stroke survivors have experienced care available as inappropriate to their needs. However, insufficient attention has been paid to how the social context shapes their experiences of care. We investigated this question with younger stroke survivors in Greater London, UK. Method: We conducted in-depth interviews with individuals aged between 24 and 62 years. Interviews were analysed thematically, with interpretation informed by Bourdieu’s concepts of field, capital and habitus. Results: In the acute care setting it was implicit for participants that expertise and guidance was to be prioritised and largely this was reported as what was received. Individuals’ cultural capital shaped expectations to access information, but health care professionals’ symbolic capital meant they controlled its provision. After discharge, professional guidance was still looked for, but many felt it was limited or unavailable. It was here that participants’ social, cultural and economic capital became more important in experiences of care. Conclusions: The field of stroke shaped younger stroke survivors’ experiences of care. Navigating stroke care was contingent on accessing different forms of capital. Differences in access to these resources influenced longer term adjustment after stroke.

Implications for Rehabilitation

• Stroke care can be conceptualised as a temporal field of social activity and relationships which shapes variations in experiences of care among younger stroke survivors, and differences in expectations of support at different time points after stroke.

• On entering the field of stroke participants reported needing health care professional guidance and expertise to manage the acute event, yet difficulties accessing information in hospital limited the agency of some individuals wanting to take an active role in their recovery.

• After discharge from hospital variations in experiences of care among participants were more evident, with a number still seeking professional guidance, and requiring the capital and agency to navigate the field of stroke.

• Despite international efforts to improve the quality of acute care, effective models of community stroke care still need to be developed.

• Bourdieu
• experiences of care
• stroke
• younger adults

Acknowledgements

We would like to thank all the participants who took part in the interviews. We are grateful to anonymous reviewers and Sasha Scambler for their insightful comments on earlier drafts of this paper.