Shaping an NHS ethics application for research with people with profound and multiple learning disabilities: Creative strategies from a participatory arts practice

Abstract

Abstract The call for the inclusive participation of adults with intellectual disabilities in research has been taken up by an emerging literature advocating the same opportunities for people with profound and multiple learning disabilities (PMLD). Yet, the barriers to researchers engaging with the demands and particular characteristics of the NHS ethical approval processes are well rehearsed. This can contribute to the marginalization already faced by people with PMLD, with the associated risk that the group remains under-researched. This case study explores current participatory action research utilizing inclusive arts techniques with people with PMLD. It suggests that despite the challenges, engagement with the NHS research ethics processes can be framed not as an isolated form-filling exercise but as a reflective device presenting an ongoing opportunity to gain multiple perspectives on a proposed project. It offers possibilities to collaboratively shape inclusive research design and develop an evolving consent process. It identifies the creative strategies that have contributed to successful ethical approvals and the subsequent participation of people with PMLD in cultural activities.