Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives.

BACKGROUND: Recent ideological shifts in service provision promote appropriate sexual expression for people with an intellectual disability (ID), although there is little evidence that such advances in ideology are matched by current service provision. Part II of the current two-part study assessed the attitudes of staff and family carers to the sexuality of people with an ID. METHOD: A questionnaire survey which included case scenarios was carried out with family (n = 155) and staff carers (n = 153) of people with an ID in the west of Ireland. RESULTS: In general, staff carers were more inclined than family carers to openly discuss issues of sexuality with service users, and to suggest environmental, rather than service-user characteristics, as impediments to such discussions. Attitudinal differences emerged with significant differences between staff and family carers and between younger and older carers. Staff carers were more likely to support service-user engagement in intimate and non-intimate relationships whereas the majority of family carers (80%) showed a preference for low levels of intimacy in service-user relationships. CONCLUSION: When compared with the attitudes of family carers towards the sexuality of people with ID, the attitudes of staff carers more closely match those promoted by ideological developments. However, differences in attitudes between carer groups may lead to inconsistent approaches to the management of sexuality. As a consequence, we conclude that there is continued need to provide staff and family carers with opportunities for dialogue and an ongoing need for training in the area of sexuality.

Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives.

BACKGROUND: Despite a recent ideological shift towards the recognition of sexual autonomy for people with an intellectual disability (ID), there are continuing social and cultural barriers to sexual expression. Part I of the current two-part study assessed the sexual knowledge, experiences and aspirations of service users through focus groups and also examined their perceptions of impediments to achieving sexual autonomy. METHOD: Thirty-two participants (20 male, 12 female) attending an ID service participated in focus groups delineated by gender and age group (13-17 years; 18-30 years; 31+ years). RESULTS: Analysis of the focus groups showed that service users, especially those over the age of 18 years, had an understanding of their sexual rights but also identified a number of social and cultural barriers that they felt prevent them from achieving sexual autonomy. Those under the age of 18 years had only rudimentary knowledge of sexuality issues, for example pregnancy and sexual anatomy, but aspired to relationships and marriage similar to those over the age of 18 years. Family and staff attitudes appeared to be very influential in the views of respondents. All service users had received some form of sex education, although the benefits of such education appeared most enduring for those over 18 years. CONCLUSION: Service users had an understanding of their sexual rights and the social and environmental barriers that prevent them from fulfilling their rights. The provision of sex education training and promotion of positive attitudes towards appropriate sexual expression is critical to the realization of sexual autonomy for people with an ID.