‘Exploring the perspectives of young adults with developmental disabilities about sexuality and sexual health education’

Abstract

Background: Sexuality is important in everyday lives; it contributes to a sense of self. Everyone has a right to access sexual experiences, form relationships, and obtain sexual health education. There is limited literature from the perspective of people with developmental disabilities about their sexuality and particularly how, or if, societal attitudes influence their sexuality and their opinions about sexual health education. The aim of this study was to explore the experiences of young adults with developmental disabilities about their sexuality, their perceptions about how their sexuality was viewed by the community, and about the sexual education that is required and how it should be delivered.Method: A qualitative interpretative phenomenological approach using a purposive sample was used to explore the perspectives of young adults, aged between 18 and 32 years old with developmental disabilities, to explore their perspectives on their sexuality, societal attitudes, and access to sexual health education. Seven semi-structured interviews were conducted and analysed using an interpretative phenomenological approach. Results: Five main themes were developed from the data: (1) sexuality is multidimensional and important, (2) the challenges and fear of expressing sexuality, (3) societal views need to change, (4) close support enables sexuality, and(5) sexual health education needs to be individualised. Conclusion:Participants suggested that sexuality was important to them, and they had the same expectations about sexuality and relationships as many young adults. However, their autonomy and self-determination to set sexuality goals were constrained by societal attitudes. Supportive family and friends enabled opportunities, but they believed the knowledge and attitudes about disability, and about disability and sexuality, of community members, service providers, funders, and educators needed to change to enable increased opportunity to express their sexuality. Participants reported a need for individualised sexual health education provided by professionals with expertise.

Supporting occupational therapists to initiate conversations about sexuality with people with intellectual disability: Co‐design by deliberative dialogue

“…Importantly, people with intellectual disability may identify themselves as LGBTQIA+ and clinicians are in a position to positively affirm such self-determination, rather than perpetuate the well-documented experiential denial they often face (Ramasamy et al, 2021). To directly challenge the infantilising, normalising myths which often surround them (Coulter et al, 2023), participants felt the resource needed to equip people with intellectual disability to understand and affirm their sexuality. This may seem simple, but our participants acknowledgement of this as a 'first step' reflects the gravity of the issues discussed in Section 1.…”

“…However, they are more likely than any other disability group to experience violence and abuse (Sutherland et al, 2021), with significantly higher rates of sexual abuse (Tomşa et al, 2021). The results of this tandem reality mean people with intellectual disability experience the disproportionate impact of restrictive and paternalistic community and social attitudes on their rights to sexual health and sexual expression (Carter et al, 2022;Coulter et al, 2023). This is further pronounced for people with intellectual disability who identify as LGBTIQA + (lesbian, gay, bisexual, transgender, intersex, queer/ questioning, asexual, and/or other non-normative identities), resulting in negative experiences with service providers and in sexual relationships (O'Shea et al, 2020;Ramasamy et al, 2021).…”

“…Despite widespread recognition that sexuality is an important dimension of human experience to be addressed by occupational therapists (Farman & Friedman, 2016; Lynch & Fortune, 2019), clinicians routinely report low levels of comfort in supporting their clients in this space (O'Mullan et al, 2021; Spaseska et al, 2022; Yallop & Fitzgerald, 1997). Occupational therapists are even more unlikely to address sexuality with people with intellectual disability, given this level of discomfort (Coulter et al, 2023), along with limited disciplinary and population specific scholarship reporting on best practice (Schmidt et al, 2021).…”