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

Abstract

Staff working with individuals with Intellectual Disabilities (ID) play an important role in enabling them to fulfill their sexual and romantic needs. Given the lack of recent reviews providing a synthesis of qualitative research in this population, the present review explored how staff working with individuals with ID in a variety of capacities (e.g. support workers, service managers, nurses, educators, psychologists, social workers) perceived their role in relation to supporting sexuality and relationships. A systematic search of EMBASE, PsychINFO, MEDLINE, CINAHL, ASSIA and SCOPUS was carried out and identified articles were rated against inclusion and exclusion criteria, as well as quality criteria. Findings were analyzed using thematic synthesis. The application of criteria resulted in the inclusion of 15 articles. 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”. Findings suggest that staff hold ambivalent attitudes and often respond inconsistently to issues relating to service users’ sexuality. Role uncertainty, fear of accountability, lack of training and policy, as well as factors related to employing organizations and family caregivers were identified as barriers. The findings highlight the importance of providing training and supervision for staff in order to address ambivalent attitudes and anxieties, further developing national and local policy in relation to sexuality and relationships, and supporting family caregivers to meaningfully work alongside staff on issues relating to service users’ sexuality.

Attitudes Towards the Sexuality of Adults with Intellectual Disabilities: A Systematic Review

“…This ambivalence is not new. Previous studies confront sexual rights discourses and moral commitment to support sexuality of adults with ID, with voices of caution towards their sexuality [4]. This is congruent with findings across adults with ID in the present study: they manifest sexual desire and interest in intimate relationships, but note a main barrier in society and those around their life.…”

“…In the case of adults with intellectual disabilities (ID), the expression of their sexuality has been denied for a long time [3]. Only recently the sexuality of adults with ID has began to interest researchers [4]. This seems to occur following current changes in disability paradigms and movements.…”

“…Attitudes of related persons (staff, family) have been shown to be key to the information received by adults with ID, and such attitudes also seem to depend on general community attitudes [1]. Furthermore, attitudes towards these people's sexuality have significant effects on their sexual decisionmaking and self-perception [4,5]. When inappropriate, the attitudes of others can even have traumatizing effects [12].…”

“…Furthermore, the study carried out by Futcher [14] only included four studies of family and staff samples, providing a very narrow overview and without reaching conclusions that could be generalized in a broad manner. Other reviews report an indirect perspective through the analysis of barriers, experiences, or support [4,5,7,15]. A very recent review of public opinions [16] was found, which offers a general overview of quantitative studies.…”

Auf dem Weg zur sexuellen Selbstbestimmung: Das Engagement der Bundeszentrale für gesundheitliche Aufklärung (BZgA) für Menschen mit Beeinträchtigungen

“…Damit dies gelingt, wurde ein holistischer Ansatz zur Umsetzung des Themas "Sexualität und Beeinträchtigungen" gewählt, der von den allgemeinen Grundsätzen der Gesundheitsförderung Empowerment, Partizipation und Kompetenzausbau geprägt ist (Abel et al 2018;Brandes und Stark 2016;Wright 2016 (Charitou et al 2021;Greenwood und Wilkinson 2013;Ortland et al 2016). Zudem belegen Studien, dass vor allem Frauen mit Beeinträchtigungen und Bewohnerinnen und Bewohner in Wohneinrichtungen einem erhöhten Risiko für sexualisierte Gewalt ausgesetzt sind (Schröttle et al 2013) und häufiger aversive sexuelle Erfahrungen machen (Holdsworth et al 2018).…”