Celebrating Plurality: How to Embed Inclusive Research Structurally and Meaningfully in Research Practice Related to People With Profound Intellectual and Multiple Disabilities

In the last decades, developments concerning “inclusive research” gave rise to a growing valuation of and need for the participation of people with experiential expertise in research practices. Knowledge related to inclusive research on people with profound intellectual and multiple disabilities (PIMD) is scarce. The aim of this study is to (1) explore how inclusive research can be structurally and meaningfully embedded in the research practice related to people with PIMD by including the experiential expertise of different stakeholders and (2) start an ongoing dialogue on this topic. Responsive evaluation, a qualitative, participatory research approach, served as the methodological frame for this study. Insight into practical and ethical questions concerning the inclusion of people with experiential expertise in research practices related to people with PIMD was obtained by a brief literature review and exploratory interviews with seven stakeholders. Additionally, six in-depth interviews with various stakeholders explored the possible answers to these questions. Finally, a focus group consisting of seven stakeholders discussed insights that lacked consensus and sparked discussion. The results were arranged in four topics: “what”: defining the used concepts; “why”: the utility and aim of the involvement of stakeholders; “who”: competences needed to participate in research; and “how”: the way participation could be organized within the research practices related to people with PIMD. There is no “one size fits all” solution of embedding inclusive research in research practices related to people with PIMD. In order to be fruitful and meaningful for everyone involved, the context and the various perspectives of all stakeholders within a research project should be taken into account. Making room for plurality, changeability, and an ongoing dialogue between all involved is hereby essential.