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.