Supporting people with intellectual disabilities to take part in focus groups: reflections on a research project

Abstract

This paper discusses how support offered to people with intellectual disabilities who take part in research might affect the resultant data. People with intellectual disabilities from a long‐stay hospital, a day centre and a self‐advocacy group, all in the UK, participated in focus groups during a research project on nurse advocacy. Their supporters were staff employed by those services who were familiar with and to the group members. The support given to participants reflected the ethos of the services involved, relating either to the medical or the social model of disability. The paper argues that the philosophy of care influencing supporters of research participants with intellectual disabilities may have profound effects on the support provided. It may facilitate or inhibit open exchange of information. It may also aid clarification or cause contamination of the resultant data.

Keywords:

• people with intellectual disabilities
• focus groups
• supporters
• models of disability
• data clarification
• data contamination

Notes

1. People with intellectual disabilities were referred to by various denigrating names until the second half of the twentieth century, when the preferred terms became ‘people with learning disabilities’ or ‘people with learning difficulties’. Recently, the term ‘people with intellectual disabilities’ has been increasingly used, indicating the requirement of (mainly) academics for an internationally acceptable term for the range of difficulties and disabilities experienced by people so labelled. Thus, while I acknowledge the research participants as people first they are referred to as people with intellectual disabilities throughout this paper.