Exploring the close relationships of people with learning disabilities: a qualitative study

Abstract

INTRODUCTION: Interpersonal relationships are beneficial for people with a learning disability (PWLD), acting as a protective barrier against transition difficulties, social stigma and negative outcomes such as physical and mental health problems. The social networks of PWLD are, however, often more restricted than those of the general population. There has been very little research which has explored the views and experiences of PWLD about their social and sexual relationships. A systematic review of the qualitative research surrounding the sexual relationships of PWLD was conducted. Eleven studies were reviewed, which revealed five themes: ‘A lack of knowledge regarding sexual relationships’, ‘Sexual relationships as restricted and regulated’, ‘Sexual relationships perceived as wrong’, ‘Sexual relationships being desired’, and ‘Sex as a negative experience’. Positive developments in the attitudes of others and supports were described, but the impact and influence of stigma, assumption, ignorance and a lack of autonomy regarding sexual relationships were dominantly reported. However, the findings of the reviewed studies must be considered with caution due to methodological limitations. The current study aimed to build on the existing qualitative research by exploring the experiences and perceptions of both sexual and close relationships for PWLD.

METHOD: Data were gathered from ten PWLD using one to one semi-structured interviews. Interviews were recorded, transcribed and analysed using Interpretive Phenomenological Analysis.

RESULTS: Five super-ordinate themes were identified; ‘Relationships feeling safe and being useful’, ‘Who’s in charge?’, ‘Struggling for an ordinary life’, ‘Touching people in relationships’ and ‘Hidden feelings’. The findings were shared with participants who confirmed their relevance in the lives of PWLD. ‘Touching people in relationships’ is presented separately within a journal article format.

DISCUSSION: The findings suggest that fundamental components of close relationships were feeling safe and receiving some form of positive gain. The lack of agency participants experienced limited the development of these aspects, whilst also preventing the ability to live an ‘ordinary existence’, which included physically intimate relationships for many individuals. Finally, participant’s feelings were generally unclear, which could be related to being interviewed by a relative stranger or emotional expression difficulties. Based upon these findings it is considered that those who support PWLD should focus their assistance on addressing negative attitudes and redressing the power imbalance to facilitate an ‘ordinary existence’ for these individuals, which may indirectly enable them to naturally develop safe and useful relationships. It is also possible that reducing the barriers and stigma surrounding close relationships would open up communication regarding this area, which could indirectly promote PWLD ability to express their emotions regarding relationships.

CONCLUSIONS: The research provides a greater insight into the lived experience of close relationships for PWLD. Participants valued close relationships that were safe and useful, but their ability to develop and maintain these was described as being restricted by other people and service rules. It is proposed that those supporting PWLD need to balance protective action against the freedom and choice required to develop and maintain close relationships, as restricting the already limited social networks of this population will negatively impact upon their quality of life.