Home & place making after stroke: Exploring the gap between rehabilitation and living environment

This thesis addresses the question why many stroke survivors, even when they have received optimal treatment in the rehabilitation center, fall into a black hole when they are at home. The goal is twofold: 1) to gain a better understanding of the experienced gap between the rehabilitation and living environment of stroke survivors, and 2) to help improve the transfer from the rehabilitation to the living environment with help of scientific knowledge. This thesis shows that to improve rehabilitation care till into the own living environment, available evidence-based knowledge should be enriched with practical knowledge of rehabilitation professionals and experience-based knowledge from stroke survivors and caregivers. Interviews with stroke survivors reveal that ‘being at home’ does not equal ‘feeling at home’. Resuming life at home after a stroke is very different from recovering in the rehabilitation environment. In order to better understand the problems, other theory is needed than only theory from rehabilitation medicine. This thesis provides a new theoretical perspective for rehabilitation medicine. We have viewed stroke survivors’ and their caregivers’ experiences through a socio-spatial lens. This results in a shift in focus from functional recovery to identity confusion and feeling at home at important places after stroke. It is recommended to have one professional in outpatient and home rehabilitation, who acts as a coach, and assists stroke survivors and caregivers in rebuilding meaningful and interconnected relationships with their lives, place by place