A Qualitative Study Exploring the Experience of Rehabilitation from the Perspective of Stroke Survivors and their Carers in the Context of Early Supported Discharge

Introduction: About 7,000 people in Ireland are hospitalised following a stroke each year. Stroke survivors with mild or moderate disability (44% of stroke survivors) are suited to Early Supported Discharge from acute hospitals. Early Supported Discharge services have largely been examined in terms of effectiveness and costs compared to conventional rehabilitation. There has been comparatively little qualitative research exploring the lived experience of stroke survivors who have undergone rehabilitation via Early Supported Discharge services.

Aims and Objectives: The aim of this study was to explore the experience of rehabilitation for stroke survivors referred to an Early Supported Discharge service from the perspective of both the stroke survivor and their primary informal carer. The objectives were; to investigate how rehabilitation post stroke via Early Supported Discharge is experienced by the stroke survivor and their informal carer as a shared process; to explore how having a family member experience a stroke and undergoing rehabilitation in the home can affect the lives of informal carers; and to explore any shared concerns of stroke survivors and their informal carers.

Methods: This study used a qualitative research design employing semi-structured interviews to collect data. Joint interviews were conducted with the stroke survivor and their primary informal carer. Thematic content analysis was used to categorise and code interview transcripts.

Results: The study population included stroke survivors who had completed their rehabilitation via an Early Supported Discharge programme in the previous six months, as well as the primary informal carer of that person. Five superordinate themes were identified during thematic analysis of the data including (1) Early Days (2) Home as a therapy space (3) Challenges encountered during therapy (4) Goal setting and (5) Challenges going forward.

Conclusion: Participants indicated high levels of satisfaction with the individualised goal-focused therapy provided by Early Supported Discharge services in their own home. When their partner suffers a stroke, carers lives are often put on hold and during this time, couples learn to adjust to their new situation together. Stroke survivors and their carers identified a need for their medical and rehabilitation teams to provide more information about their stroke and their potential to regain function. Stroke survivors indicated poor knowledge regarding symptoms of post-stroke fatigue or their risk of subsequent stroke.

Implications: Exploring the lived experience of stroke survivors and their informal carers gives insight into the key determinants of successful rehabilitation. Achievable and meaningful goal setting in conjunction with effective communication between all stakeholders in the rehabilitation process leads to optimal rehabilitation. Stroke survivors should also be educated on post stroke fatigue management strategies and secondary stroke prevention measures.