The impact of lifelong family care on family caregivers' perceptions of the sexuality of young adults with intellectual disabilities in the Western Cape of South Africa

This paper presents findings of a constructivist grounded theory study conducted within the Western Cape Province of South Africa. The study explored how family caregivers respond to sexuality issues of their young adults with intellectual disabilities (ID). Indepth interviews and focus group discussions were used as methods of data collection. Twenty-five family caregivers participated in the study. The family caregivers’ perceptions highlight how the lifelong care relationship and the living arrangements attached to it may become a hindrance to people with ID exercising sexual autonomy. The family caregivers felt responsible for the young adults’ behavior and determined what was appropriate or not with regards to the young adults’ sexuality. Concerns about the young adults’ future care were central in the family caregivers’ responses. We conclude that without the appropriate forms of support for both the young adults and their caregivers, the young adults will continue to be policed by the family caregivers and not have choices and opportunities to enjoy and express their sexuality. The support interventions needed should alleviate the burden of care from the family caregivers and also ensure independent living and more choices for the young adults with ID.