Home, health and participation for community living people with disability

Abstract: The aim of this thesis was to contribute to the understanding of aspects related to home, health and participation for community living people with disability and identify different groups with different needs for interventions. Study I used focus groups to explore aspects of importance for participation. Twenty-nine people with Parkinson’s Disease participated in nine focus groups. Studies II-III utilized baseline data from an ongoing study among people applying for housing adaptations in southern Swedish municipalities. Study II investigated personal, environmental, and activity-related factors linked to participation frequency and satisfaction among 128 housing adaptation clients. Study III investigated differences in participation frequency, participation satisfaction and self-rated health between groups of housing adaptation applicants. Study IV utilized interview data and study specific questions in longitudinal mixed-method design to explore experiences of participation before and after a housing adaptation. Study I revealed that participation was experienced in a variety of situations in a complex context of home and community. Study II showed that frequency of participation had a strong association with gender, cognitive impairments and dependence in ADL while satisfaction with participation had a strong association with age, usability aspects and self-rated health. Study III identified six heterogeneous groups, differing in terms of age, ADL dependence, functional limitations, cognitive impairments, concerns about falling and usability of the home, that also showed significant differences in participation and self-rated health. In Study IV, an overall theme of struggling with participation towards satisfaction with participation emerged and revealed how the participants experienced their participation on a continuum. The findings provide insights into how participation inside and outside the home, with others or alone is related to the person, the environment, and the performance of activities. This speaks to the importance of being observant of the different aspects of restrictions to participation for each individual, especially as disability often progresses over time.