To what extent are people with intellectual disabilities (ID) active partners in focus group research? A literature review

Abstract

Abstract: Zarb’s (1992) criteria were used to inspect the emancipatory potential met in six pieces of focus group research and the level of collaboration and inclusion for people with ID as ‘active partners’ in research. Selected post-2010 research was sourced from a search of online databases pertinent to nursing, social work and ID. The exercise found that control mostly lies in the hands of academics and clinicians. Research is carried out with people with mild to moderate intellectual disabilities while those with more complex needs are excluded. Power relationships are not closely examined. It is possible to involve people with ID in research using adapted methods and disabled researchers. Firstly, the idea of power and control for active involvement of participants with ID in focus groups is examined. Then recent research is explored through comparative analysis and a discussion. The author concludes that researchers should account more fully for their own positions of power in the medical or social model of disability. Researchers should offer opportunities for criticism and account for the products of research. Turning abstract concepts into concrete examples may benefit participants with intellectual disabilities.Keywords: focus groups; intellectual disabilities; disability research; groupwork; group work