How to support working aged individuals to live well with poststroke aphasia: a mixed methodologies study.

Background: Person-centred support for ‘living well’ with chronic conditions is necessarily underpinned by patient experiences and needs. About one third of people with stroke have the communication impairment, aphasia, but are under-represented in stroke studies. Additionally, there is a lack of research directly asking people with poststroke aphasia (PWA) about what supports them to live well. Thus, we lack high-quality guidance around developing person-centred support in the context of aphasia. This is particularly true for working aged PWA, despite increasing incidence of working aged stroke. This age group additionally may additionally have unique biopsychosocial support needs for a longer number of years. This PhD aimed to find out how to optimise support for working aged PWA to LWA in Ireland. Design and participants: The design was multiphase mixed methods and underpinned by Critical Realism. The studies comprised: a qualitative evidence synthesis of interviews with PWA; a survey of Speech and Language Therapists; qualitative interviews with working aged PWA; and triangulation of findings. Public and Patient Involvement collaborators with aphasia provided input throughout. Results: LWA was promoted via responsive, flexible and long-term support and information for PWA and families, and through opportunities for social participation. There were shortcomings and inequities in stroke care in Ireland. PWA and families experienced significant life changes and upheaval. Working aged PWA require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment. Conclusions: There is an urgent need for structural reforms that improve equity and transparency in access to aphasia and stroke care, information and self-management support for working aged PWA and their families. Furthermore, working aged PWA need support and opportunities for meaningful social participation and contribution in a way that recognises and responds to diversity and individual preferences.