‘She misses the subtleties and I have to help – help to make the invisible visible’: parents’ role in supporting adults with intellectual and developmental disabilities with intimate relationships

Abstract

People with intellectual and developmental disabilities often need support to develop and maintain intimate relationships; however, little is known regarding the role of family carers in this area. Focus groups were conducted with 19 family members to explore the support they provide to people with intellectual and developmental disabilities to find a potential partner and any support they may have to provide to support/develop an existing relationship. Family members provided similar support in this area as support staff, including both practical and emotional support. More needs to be done to support the family members providing this support, such as access to specialist resources and advice, as well as facilitated opportunities to discuss concerns.

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).…”

“…Professional support and family support for relationships were mentioned as facilitators [ 41 , 46 ].…”

‘Love makes me feel good inside and my heart is fixed’: What adults with intellectual disabilities have to say about love and relationships

“…Finlay et al, (2008) point to the importance of (amongst other things) paying attention to the small, frequent everyday areas where choices can be respected and decision‐making enhanced. In the other studies linked to this project, staff and family carers gave examples of how they empowered people with intellectual disabilities by genuinely listening to their concerns and desires and trying to be careful not to abuse the influence and power they inevitably had over their lives (Bates et al, 2020a, b). This is clearly linked to the concerns raised by people with intellectual disabilities in this study about autonomy and how they are prevented from exerting choice and control over their lives.…”

Don't go it alone: Locating the sexual health curricula available to families of students with intellectual disability

“…While these aims are well‐established for students without disabilities, limited access to and exclusion from school‐based SHC delivery contributes to the interpersonal, psychological, and sexual risks that students with ID experience (Carter et al, 2022; Grove et al, 2018). Students with ID have the right to make informed decisions within their relationships, and deserve to be supported by educators, family members, and other caregivers as they cultivate the skills needed to be self‐advocates within those relationships (Bates et al, 2021; Friedman et al, 2014).…”

“…Perhaps unsurprisingly, family members often characterize the process of delivering sexuality education at home as isolating, distressing, and frustrating: “We are not prepared, are we? We are not trained, we are not proactive, we are reactive” (Bates et al, 2021, p. 501).…”