Mutually Enriching: Involvement, Roles and Experiences of Adult Siblings of Individuals With Pervasive Support Needs and Intellectual Disabilities

Individuals with pervasive support needs and intellectual disabilities (PID) need intensive and specialized support. Siblings may provide part of this support, however, little is known about their involvement and experiences. Societal changes such as cuts in financing and personnel shortages may increase the need for family involvement. At the same time collaboration with healthcare professionals is particularly demanding in such situations, and siblings may be burdened (too) heavily. Dorsman explored the roles and experiences of these adult siblings using surveys and interviews, and explored attitudes of professionals regarding collaboration with them.
Participants indicated that they fulfilled various and often multiple roles. These roles entail both valuable experiences and challenges. Roles and experiences are influenced by various factors during the life course. In addition, this thesis shows how valuable activities siblings do with- or for- their siblings with PID, are for their siblings participation. Most healthcare professionals indicated they were positive about collaborating with siblings. However, findings indicate there is room for improvement with regard to their knowledge about the preferences of siblings.
This research illustrates how the mutual bond between siblings -of whom one has a PID- can enrich both siblings lives, and what challenges it can entail. Insights from this thesis can contribute to siblings being (and feeling) more acknowledged as important partners in collaboration with healthcare professionals and in the roles they fulfill.