What are the experiences of people with learning disabilities, and their support workers, when negotiating access to opportunities for developing relationships and intimacy?

Abstract

People with learning disabilities (PWLD) are often described as ‘vulnerable’ and needing protection. This contributes to a lack of involvement in decision making. Despite recent positive shifts in societal attitudes surrounding sex and PWLD, gaps between attitudes and practice remain (Shakespeare & Richardson, 2018). There is confusion about how to effectively support and empower PWLD to engage in intimate relationships whilst minimising potential harm. This study aimed to explore the experiences of PWLD and their support workers, when negotiating access to relationships and intimacy. The voices of PWLD were at the centre of this research.A qualitative methodology was used to explore the topic. Three PWLD and three support workers participated. It consisted of two parts: part one was data creation using prompt cards to facilitate discussion between PWLD and support workers and part two was a semi structured interview with individual participants using an Interpersonal Process Recall (IPR) framework. Data was analysed using a multi perspective Interpretative Phenomenological Analysis (IPA) approach.Personal experiential themes (PETs) and subthemes represented the experiences of each participant and were then analysed in the context of their pair (PWLD and support workers). Group experiential themes (GETs) were developed for the group as a whole, paying particular attention to any similarities or differences between PWLD and support workers. Four overarching GETs were: intersecting layers of vulnerability, navigating without a compass, the struggle for control and fearing negative consequences.This study provided each participant with a rare opportunity to safely discuss relationships and intimacy in a scaffolded space. The outcomes highlight a need for further education and guidance for both PWLD and support workers as the current lack of this contributed to parallel experiences of perceived vulnerability. This often led to avoidance and restriction of PWLD’s right to engage in relationships and intimacy.