Romantic and sexual lives of adults with intellectual disabilities: exploring the perceptions and experiences of mothers and staff using interpretative phenomenological analysis and thematic synthesis
Research has evidenced that individuals with Intellectual Disabilities (ID) value and desire romantic and sexual relationships, however often lack the opportunities and socio-sexual knowledge required to pursue these. In this context, family and staff play a key role in enabling individuals with ID to fulfill their sexual and romantic needs. In recent years this has led to a growing body of research focusing on how family carers and staff perceive the romantic and sexual lives of individuals with ID and their own role in supporting these. Given the available qualitative literature focusing on staff experiences of supporting the sexuality and relationships of individuals with ID, a systematic review was conducted to explore, collate and critically appraise qualitative research in this area. Findings from included studies were analysed using thematic synthesis. Four themes were identified: (a) “Attitudes towards sexuality and relationships: A right and a challenge”, (b) “Responding to sexuality and relationships: A conflicted discourse”, (c) “Uncertainty and lack of systemic support”, and (d) “Influences on decision-making”. These findings are discussed alongside existing literature and are used to make recommendations for research and practice. Most previous research with parents has primarily focused on parental perceptions of their children’s emerging sexuality during adolescence, as opposed to perceptions of their wider romantic and sexual experiences as they grow older. This study explored the experiences of nine mothers of adult individuals (18-41 years old) with mild/moderate ID regarding their sons’ and daughters’ romantic and sexual lives using interviews. Data was analysed using Interpretative Phenomenological Analysis (IPA) and organised into five themes: (a) “Just like everybody else”, (b) “But is it really the same?”, (c) “Risk and vulnerability”, (d) “Facilitating and protecting: A fine balance” and (e) “Exploring personal meaning and hope”. The findings emphasised the need for supporting mothers in their role, especially in relation to providing sexual education to their children. Suggestions for future research are discussed.