Parental Barriers, Enablers and Approaches to Communicating About Sexuality and Relationships with Their Children with Intellectual Disability and Autism Spectrum Disorder: A Scoping Review

Children and young people with intellectual disability and Autism Spectrum Disorder can rely more on parents for relationship and sexuality information and support than children without these diagnoses. This scoping review aimed to identify the barriers and enablers to parental communication on relationships and sexuality for young people with intellectual disability and Autism Spectrum Disorder and to identify approaches that may improve communication in this area. A scoping review methodology was adopted using Proquest Health Research Premium Collection, MEDLINE, PsychINFO, and CINAHL databases. PRISMA-SCR guidelines were used to guide the search strategy, study selection, data collection and reporting. Fifteen studies met inclusion criteria. Communication barriers identified included concern regarding children’s ability to understand information; beliefs that information was not relevant; concern regarding responses to sexual information; a lack of expertise; and experiences of societal stigma related to disability and sexuality. A desire to communicate, addressing personal biases, adopting holistic approaches to sexuality education and accessing peer support were communication enablers. Findings highlight challenges faced by parents when engaging in conversation and communication on relationships and sexuality. These challenges may arise due to the competing demands of caring for a young person with a disability, societal stigma experienced when discussing sexuality in the context of disability, and issues accessing appropriate resources. Nonetheless, the review highlights a willingness amongst parents to learn and improve their confidence and skill. The review outlines a range of approaches that have shown promise in supporting parents in initiating conversations and developing communication skills.