Trying to Get it Right: Undertaking research involving people with learning difficulties

Abstract

This paper uses criteria defined by Zarb to describe research undertaken with people with learning difficulties, in the context of an emerging emancipatory paradigm. First, the paper addresses the question: Who controlled the research and what it was about? It considers consultation with people with learning difficulties, the influence of public service organisations and the ethical committee. Secondly, the paper evaluates how far disabled people were involved in the research process, and discusses issues relating to the inclusion of people with learning difficulties as respondents, obtaining informed consent and the involvement of carers in interviews. Finally, the paper discusses the questions: What opportunities existed for disabled people to criticise the research and influence its future direction? What happened to the products of the research? The role of a pilot study, opportunities to provide feedback and dissemination strategies are described.