It is Time to Stop Talking and Start Doing: The Views of People with Learning Disability on Future Research

Abstract

There is a need for people with learning disabilities to be involved in directing research to ensure that the research is meaningful to those it concerns. This paper describes a scoping exercise to determine the research priorities for the field of learning disabilities for the next ten years. It focuses specifically on the role of people with learning disabilities in setting this research agenda and describes the methodology used, which involved a series of consultation workshops. Analysis of the data from these generated six priority themes: access to health care; getting good support; the right to relationships; housing options; work and personal finance; inclusion in the community. The findings showed that it is possible for people with learning disabilities to participate in setting a research agenda and there was agreement between the different stakeholders on the fundamental priorities. Moreover, the inclusion of people with learning disabilities provided a perspective that could not be adequately represented by other stakeholder groups. People with learning disabilities were concerned that research has a meaningful impact and can lead to demonstrable improvements in care. In order for this to happen there is a need for widespread dissemination of accessible outputs that reach the relevant stakeholders.