Determining unmet needs for carers of people with post-stroke aphasia: user perspectives on a screening tool.

Abstract

Carers of people with aphasia face unique challenges, experiencing a higher burden of care and more negative outcomes compared to carers of stroke survivors without aphasia. A screening tool was co-designed to address unmet needs related to caring for young stroke survivors and the carers' own health and wellbeing. However, it is not known whether this tool is suitable for carers of people with post-stroke aphasia across all age groups. The aim of this study was to evaluate the tool's suitability and, if required, adapt it for this population. A mixed-methods design was used with ten purposefully recruited carers of people with post-stroke aphasia. Participants completed a 5-point Likert scale rating their satisfaction with how well each section of the tool addressed their needs, followed by structured interviews to explore feedback and identify adaptations. Participants were generally satisfied with the tool (mean rating: 4.3/5). Structured interviews identified 17 new items, including communication strategies and carer burnout. The adapted tool aims to identify individual needs of carers for people with aphasia across information provision, support or training within healthcare and the community.