Views and Experiences of People with Intellectual Disabilities Regarding Intimate Relationships: A Qualitative Metasynthesis

Abstract

The aims of this review were to systematically identify, critically appraise and synthesize the results of existing qualitative literature exploring the views and experiences of intimate relationships amongst people with intellectual disabilities. Fourteen peer-reviewed articles were identified through a systematic search of eight databases, reference lists, citations, and relevant journals. The identified articles were appraised for quality, then synthesized using a metaethnography approach. No study met all quality criteria and references to ethical approval were often lacking. Interpretation of the findings suggested three key themes: the meaning of intimate relationships, external constraints and facilitators, and managing external constraints. Though many people with intellectual disabilities desire and benefit from intimate relationships, they experience restrictions that others do not, which can lead to isolation and loneliness. Intimate relationships are not always necessarily linked with sexual behavior; therefore, intimate relationships warrant their own focus in future research, as well as in education and training for people with intellectual disabilities and their caregivers. Within this, a commitment to transparency over research processes is needed, in particular with reference to how ethical approval was obtained, since this has been a shortcoming of research with this focus to date.

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

“…In this specific context, perceptions of and concerns for accountability permeate these experiences. In keeping with the results of a previous study (English et al, ), this study reveals that support workers hesitate to offer sociosexual advice and support to service users and that this hesitation upholds professional boundaries between support workers and sexuality specialists. The results of this study further suggest that when interventions are planned to meet service users' needs, they are sometimes mitigated by a precautionary principle.…”

“…A recent metasynthesis concluded that, in the context of physical intimacy, “[…] varying degrees of constraint were being put on [participants] in terms of being able (or allowed) to engage in intimate relationships and to what extent. The prohibition of relationships experienced ranged from the implicit […] to the overtly explicit […]” (English, Tickle, & dasNair, , p. 168).…”

Understanding the Risk of Sexual Abuse for Adults With Intellectual and Developmental Disabilities from an Ecological Framework

“…Understanding the experiences of sexuality from the perspective of individuals with IDD is critical to creating accessible and appropriate sexual health education and service (Bernert, 2011). There is a strong need for research that listens to the voices and experiences of self-advocates with IDD, to ensure adaptations to sexuality education are most impactful for this population (English, Tickle, & dasNair, 2018;Whittle & Butler, 2018).…”

The Design, Content and Delivery of Relationship and Sexuality Education Programmes for People with Intellectual Disabilities: A Systematic Review of the International Evidence

“…As with the typically developing, people with ID want meaningful relationships and desire sexual intimacy and to be sexually active [ 24 ]. As young adults with ID transition from child to adult services tensions are evident regarding the expression of their sexuality due to concerns regarding the risks associated with exploitation versus the right to experience relationships and intimacy [ 25 , 26 ]. However, concerns exist around an individual’s lack of knowledge about relationships and appropriate sexual behaviours [ 27 ].…”