Journal article Open Access
Pfister, Andreas; Georgi-Tscherry, Pia; Berger, Fabian; Studer, Michaela
Background: How adults with disabilities perceive participation has received little attention. Our purpose was to
formulate a grounded theory on participation, based on the subjective experience of adults with cognitive, physical,
or psychiatric impairment(s), and to identify barriers, facilitators, and support needs concerning participation in
different areas of life. We aimed to explore whether the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD), ratified by Switzerland in 2014, and its principles are being met. Here we report on the main category and focus on the participation areas ‘family of origin’ and ‘intimate relationships.’
Methods: In a qualitative, grounded theory study, we conducted problem-centered interviews with 23 adults with
cognitive, physical, or psychiatric impairments (30–53 years; 11 men, 12 women), with different housing (on their
own, assisted living, with parents) and work situations (primary vs. secondary labor market) in nine German-speaking
Results: Participation can be understood as a continuum that extends on a horizontal level (from participation is
restricted to participation takes place) and a vertical level (separative setting vs. inclusive setting). In separative as
well as in inclusive settings, diverse levels of participation are possible. Many participants were stuck in an ‘in-between’
area between separative and inclusion-oriented settings. In the family of origin, there was a thin line between fulfilling relations that enhance participation and conflictual relations and overprotective parenting that limit participation. In intimate relationships, opportunities for participation were limited overall. Many interviewees were single. Social environment and family of origin (e.g., parents) can enable and facilitate intimate relationships and sexual contacts but can also be an important barrier.
Conclusions: Participation can be understood as a continuum. Participation restrictions exist in separative as well as in inclusive-oriented settings, also in the areas of family of origin and intimate relationships. Participation barriers must be torn down in separative as well as in inclusion-oriented settings. Trajectories to inclusive settings should be facilitated. Families with children with impairment(s) should be supported from early on to create the best possible participation possibilities for the (adult) person with impairment(s) and to support the family of origin itself.