Informal caregiving following stroke: a qualitative exploration of carer self-identification, care-related language and support experiences

Background and objectives: Following 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. This project sought to understand the process of how and when informal carers start to see themselves as such, as well as their preferred terminology and experiences of support in this role. Methods: Qualitative semi-structured interviews with eighteen UK adults who had provided care or support to a friend or family member after a stroke. Data were analysed thematically using a template analysis approach. PCPI collaboration, through a formed carer advisory group, enhanced the study methodology. Results: Five main themes were developed: 1) Adopting and adjusting to the care role, 2) Accessibility of support, 3) Perceptions of support, 4) Acceptability of care-related language and terminology, 5) Function of care-related language and terminology. Facilitators and barriers to participants self-identifying with the care role were identified. Self-identification was found to commonly occur at four key points along the stroke trajectory. Two main contrasting opinions around the acceptability of care-related terminology were shared. Accessibility of support services and suggestions for future support provision were discussed. Conclusion: Individuals identify as carers at different points and to different extents throughout the stroke trajectory. Various factors influence this process. These findings have implications for the provision of more inclusive and accessible support for informal caregivers of stroke survivors.