A Survey of Self-Advocacy Groups for People with Learning Disabilities in an English Region

Abstract

This is the first of two articles which report the rationale for and the planning, execution and analysis of a postal survey of self-advocacy groups in the English midlands. It considers some key literature on previous studies of self-advocacy groups. Ethical considerations including informed consent and confidentiality are explored. The researcher gained approval from various research ethics committees in the planning of the study. It is important that approval was secured prior to gathering data from potentially vulnerable individuals. This may be seen as paradoxical because a cornerstone of the self-advocacy movement is for people to make their own choices and decisions, including informed consent to participate in a research project. This article discusses the design and piloting of an illustrated questionnaire and letter of invitation to participate in the study. Methodological issues in conducting out-research, including remote postal work, with people with learning disabilities are also examined.