Participation of adults with cognitive, physical, or psychiatric impairments in family of origin and intimate relationships: a grounded theory study

Abstract

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 Germanspeaking Swiss cantons. 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 'inbetween' 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.

The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review

“…Sixteen of the articles on this theme identified barriers or facilitators that people with ID encounter when initiating or maintaining intimate and affective relationships with other people [ 22 , 37 , 41 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 ]. Eleven studies included only people with ID as participants, while five focused on the perceptions of carers (either family or staff).…”