An ethical inquiry of support workers' experiences related to sexuality in the context of intellectual disabilities in Quebec, Canada

Abstract

Accessible summary• Support workers' attitudes towards the sexuality of people with intellectual disabilities are important. They can influence the support people with intellectual disabilities receive regarding their affective and sexual life.• Six support workers talked about their personal experiences. They talked about what they found easy and difficult when helping people with intellectual disabilities express their sexual life and needs.• They said that sexuality is a right, a health matter and an important need. They also said it was sometimes difficult to include sexuality in their work.• They also said they often feel insecure and uncertain about how to help because sexuality is a difficult subject to talk about. They wanted to help people make their own decisions, but also wanted to protect them if needed. AbstractBackground: In the last decade, the evolution of support workers' attitudes towards the affective and sexual lives of people with intellectual disabilities has been described as increasingly positive. However, restrictive attitudes targeting affective and sexual life are still documented. Material and methods:This study aimed to explore the ethical implications of support workers' experiences concerning sexuality in the context of intellectual disabilities in everyday practice. This inquiry was guided by the following research questions: (a) In the context of intellectual disabilities, what meanings do service users' sexuality have for support workers? (b) How are those meanings translated into practice? Inspired by critical phenomenology, in-depth individual interviews with support workers were conducted and analysed. Results: One superordinate theme (Negotiating Interventions) and three themes were identified: "Crossing Organizational Borders," "A Duty to Act Despite Uncertainty" and "Navigating Competing and Contradictory Discourses." Conclusion: Support workers' experiences related to sexuality in the context of intellectual disabilities are influenced by how they define their role in a clinical context. | 117 PARISEAU-LEGAULT ET AL.

Supporting Adults with Intellectual Disabilities with Relationships and Sex: A Systematic Review and Thematic Synthesis of Qualitative Research with Staff

“…Assigned scores and global ratings are illustrated in Table 1. Five studies received "high" global quality ratings [27,31,32,48,49], nine received "moderate" global quality ratings [29,[50][51][52][53][54][55][56][57] and two received "low" global quality ratings [30,58]. Butler and colleagues [41] recommend that studies scoring less than six be excluded from reviews.…”

“…All studies reported that the sexual needs of individuals with ID were often also viewed as a source of risk [27,29,31,32,[48][49][50][52][53][54][55][56][57], mostly due to service users' vulnerability and the possibility of abuse and exploitation within their relationships. As the following extract suggests, staff attitudes were generally largely conflicted and echoed a commonly reported ethical dilemma between protection and sexual autonomy, and the implications this could have for the potential violation of service users' rights: "He has the right to a sexual life (…) Why not?…”

“…Sexual behavior was also often described as inappropriate and problematic [32,50,52,54,57] or 'childlike' [29]. In some studies, staff expressed ambivalent or negative views towards the issue of parenthood for individuals with ID [32,54,57]: ''I don't think it's fair to have somebody who is disabled themselves and can't take care of themselves… I don't mind sex but the pregnancy is not fair to the child…'' [57, p. 357].…”

“…Sexual behavior was also often described as inappropriate and problematic [32,50,52,54,57] or 'childlike' [29]. In some studies, staff expressed ambivalent or negative views towards the issue of parenthood for individuals with ID [32,54,57]: ''I don't think it's fair to have somebody who is disabled themselves and can't take care of themselves… I don't mind sex but the pregnancy is not fair to the child…'' [57, p. 357]. Similarly, other studies suggested that involvement in same-sex relationships was not viewed as a conscious choice made by in individuals with ID or a legitimate expression of sexuality [51,52] and was met with higher levels of anxiety compared to opposite-sex relationships [56].…”

“…Furthermore, since the publication of all three reviews, a number of qualitative research studies concerned with staff experiences in relation to their role of supporting the sexuality of adults with ID have been published [27][28][29][30][31][32]. In their discussion regarding the necessity of updating qualitative systematic reviews, France and colleagues [33] concluded that the emergence of new research, potentially contributing novel concepts, warrants an update.…”