Some Ethical and Methodological Issues in Research with People with Learning Difficulties

ABSTRACT This paper discusses some ethical and methodological issues which arose in a recent study examining the exercise of choice by people with learning difficulties. The research aimed to examine in detail the choice-making process, and to explore ways of involving people with learning difficulties both as respondents and as contributors to the study design. Various dilemmas were encountered-including how to gain informed consent from people with profound impairment, the risk of intrusion when conducting research in people's own homes, and the dangers of raising expectations of continuing friendship. The importance of accountability when analysing data and disseminating findings is highlighted. A Research Advisory Group, including two people with learning difficulties, was set up to give guidance on the study. Steps were taken, but not enough, to facilitate their involvement in the meetings. Reflecting on experience gained in this study and on research reported elsewhere, a number of pointers for future research are drawn. These include the need to consider the potential implications of intellectual impairment for involvement in the research process.