ArticleBMJ open2025
Informal caregiving following stroke: a qualitative exploration of carer self-identification, care-related language and support experiences.
Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
objectivesFollowing a stroke, people often receive informal care from friends and family. Some carers adopt the role quickly, whereas others find it more difficult to see themselves as a 'carer' and do not access relevant support. To understand the process of how and when informal carers start to see themselves as such, and their preferred terminology and experiences of support in this role.
designThe study adopted an exploratory qualitative design, collecting data through semistructured interviews with participants and a brief survey of participant demographics. Data were analysed thematically using a template analysis approach. Patient, carer and public involvement collaboration, through a formed carer advisory group, enhanced the study methodology.
settingThe project was a nationwide study, with participants residing across the UK. The study took place from September 2021 to April 2024.
participants18 adults (aged 18 years and above) who had provided care or support to a friend or family member after a stroke that occurred at least 1 year prior to participation completed the study.
resultsFive main themes were developed: (
conclusionsIndividuals identify as 'carers' at different points and to different extents throughout the stroke trajectory. Findings outline the factors that facilitate this self-identification process and those which constitute challenges to adjusting to the role. Recommendations are made relating to the accessibility of support for informal carers of stroke survivors, including: use of more accessible and inclusive care-related language, educational needs relating to what a 'carer' is and involvement of carers and wider family in the rehabilitation process.
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