"We All Want to be Loved": Exploring the Sexual and Dating Health Needs of Young Adults with Intellectual and Developmental Disabilities from the Perspective of Parents

Background: Young people with disabilities have unique needs related to dating and sexuality. Research supports that young people with intellectual and developmental disabilities (I/DD) desire more education and support. However, young people with I/DD often lack formal and informal sex education and dating information. Despite these barriers, youth with disabilities report feeling empowered when included in discussion with family and close friends about their dating and sexual wants and needs. This study responds to the need to better understand how to support parents of youth with I/DD with regard to sexual and dating health by asking them directly about what they want to know, what they feel youth should know, and how to implement community-based sexual health and dating programming that would support both parents and their youth with I/DD.

Methods: Using community-based participatory methods, we partnered with a local agency to interview Parent Resource Coordinators (PRCs; N=11 females; 73% White); these were mothers of adolescents or young adults with I/DD (M_{child age}=18.85; SD= 5.49) who also worked for the agency to provide a wide range of disability support to other families in the community. In-depth semi-structured interviews were held on zoom, digitally recorded and transcribed verbatim. Key questions pertained to supporting youth in their sexuality and dating, with the aim of providing the agency with recommendations for program enhancement and development. We analyzed data using inductive content analysis, which aims to raise persistent, recurrent, and meaningful codes to prominent themes across participant interviews.

Results: Parents struggled to teach and support their youth with regard to sexual health and dating and expressed specific desires for adult and youth psychoeducation. Specifically, they desired that youth be taught about healthy versus unhealthy relationships and social dating norms including how to use technology in a safe and healthy way. Parents also wanted youth to learn about private (e.g., masturbation, sexual activity) versus public (e.g., hand holding) behaviors, along with anatomy, hygiene, contraception use/family planning, assessing readiness for sex, setting boundaries, and sexual consent. Regarding format, parents voiced the importance of individualized interventions and creating opportunities for both adults (e.g., via zoom) and youth (preferred in-person) to learn about sex and dating. Parents also wanted to create safe opportunities for youth with I/DD to meet one another and gain autonomy from parents (e.g., a supervised dance). Despite challenges, they expressed many benefits to dating and wanted theirs and other youth with disabilities to have this experience.

Conclusions and Implications: Although parents may struggle to tailor sexuality and dating education to their child’s needs, parents viewed the provision of this education as important to supporting their child’s well-being, development, and mental health. Importantly, this research reflects a genuine community partnership, and findings are relevant both locally, as well as more broadly to social workers who will inevitably work with youth with disabilities and their families. They are also significant to parents of youth with I/DD, who may also serve as resources to other families and youths.