“She’ll be able to live independently… as long as I’m around”: The “lived” experience of parenting a child with 22q11.2 deletion syndrome in the transition to adulthood

Abstract

Background 22q11.2 deletion syndrome (22q11DS) is the most common microdeletion syndrome. Parents of emerging adults with 22q11DS have an intense and ongoing involvement in their child's life. This study explores the lived experience of parents in relation to their child becoming independent and establishing intimate relationships. Method Interpretative phenomenological analysis was used to explore the positive and negative experiences of five parents of emerging adults with 22q11DS. Results Supervised independence overarched four subordinate themes. These themes highlighted the difficulties experienced by parents attempting to relinquish control whilst still experiencing a need to keep their child safe as their child negotiated a complex stage of life. Parents waited for “signs” from their child before initiating conversations about intimate relationships. Conclusions These findings provide insight into the lived experience of parenting a child through the transition into adulthood, providing a catalyst for further research with the aim of facilitating better services for families.

‘People with intellectual disabilities living in the communities is bad enough let alone…having sex’: Exploring societal influence on social care workers' attitudes, beliefs and behaviours towards support for personal and sexual relationship needs.

“…To be included in the study SCWs needed to (1) provide direct support for adults with intellectual disabilities (2) work within community living services or day services and (3) speak and read English language. Those who wished to participate were screened for eligibility (Goodwin et al, 2019) before their written consent was secured. Eighteen SCWs were purposively recruited for this study.…”

Sexuality, Education and Support for People with Intellectual Disabilities: A Systematic Review of the Attitudes of Support Staff and Relatives

“…Heterogeneous attitudes were expressed toward the sexual needs and feelings of people with intellectual disabilities within five studies focusing on support staff [38,40,42,48,49], five on relatives [44,[50][51][52][53], and two studies that took the perspectives of both into account [47,54]. On the one hand, several support staff and relatives agreed that people with intellectual disabilities have the same sexual feelings, in the words of a relative "as the rest of us" [51, p. 285; 40, 47].…”

“…On the one hand, several support staff and relatives agreed that people with intellectual disabilities have the same sexual feelings, in the words of a relative "as the rest of us" [51, p. 285; 40, 47]. On the other hand, some support staff and relatives experienced difficulties recognizing the sexual feelings of people with intellectual disabilities [50,53,54]. Moreover, some support staff indicated that the presence of sexual feelings depended on clients' age, gender, and/or the severity of their disability [42,49].…”

“…Part of the reported attitudes of support staff [i.e., five studies; ], relatives [i.e., five studies; 44,50,51,52,53], or both [i.e., three studies; 46,57,58] touched upon the assumed ability of people with intellectual disabilities to understand sexuality. Three topics emerged.…”

“…Furthermore, in both Bates et al [48] and Abott and Howarth's [55] studies, some support staff viewed people with intellectual disabilities as desperately seeking relationships, which led them to be open toward any gender, or accepting an abusive relationship. Some relatives believed that it was inevitable that intimate relationships would occur, with some believing that marriage and children were future possibilities [50,53,61,66]. However, both support staff and relatives deemed that people with intellectual disabilities lacked the required social skills to establish and maintain relationships [43,44,48,53].…”