Mothers of Adults with Intellectual Disabilities: Experiences, Perceptions and Influences on Their Sons’ and Daughters’ Romantic and Sexual Lives

Abstract

AbstractIndividuals with Intellectual Disability (ID) value romantic and sexual expression, however often face barriers to developing relationships. Family caregivers play a significant role in supporting them with such matters throughout adulthood. In order to understand how to best support individuals with ID in this sphere of their lives, it is therefore essential to investigate family caregivers’ perceptions, influences and experiences. This study explored the views and experiences of nine mothers of adult individuals with mild and moderate ID in relation to their children’s romantic and sexual lives. Data was collected using semi-structured interviews and analyzed using Interpretative Phenomenological Analysis. Findings suggested that mothers held positive, but sometimes ambivalent, attitudes towards their children’s romantic and sexual lives. They assumed the dual role of a facilitator and a protector, and although they generally expressed a commitment to supporting romantic experiences, they viewed sexual experiences with caution due to fears relating to vulnerability and risk. In the context of vulnerability, although most participants described their children’s sexual knowledge as poor, they reported lack of preventative sexual or contraceptive education delivered at home. Participants hoped that their children would manage a long-term relationship, however also experienced a sense of loss related to the realization that this might not be possible. The findings of this study highlight the need to help mothers to proactively support their adult children in building sexual knowledge. This, in turn, can reduce individuals’ vulnerability and improve their ability to make informed choices. Suggestions for future research are also discussed.