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

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 disabiliities may have profound effects on the support provided. It may facilitate or inhibit open exchange of information. It may also aid clarification of cause contamination of the resultant data.