Shared decision making in inclusive research: Reflections from an inclusive research team

Abstract

Background: Health research is increasingly conducted with the active involvement of the people who are the focus of the research. People with intellectual disabilities also participate actively in research; this is called inclusive research. Collaboration in inclusive research teams requires shared decision-making (SDM). Although inclusive studies frequently refer to decision-making as something the research team does together, the decision-making process is still a black box. This study aims to provide more insight into SDM in inclusive research by reflecting on a 3-year collaboration in an inclusive research team. The research questions are: (1) What kinds of decisions were made by the inclusive research team? (2) How were decisions made by the inclusive research team? (3) What impact did the decisions have on the research project?. Methods: To answer the research questions, the inclusive research team members reflected on SDM in their project by looking at the documentation of the inclusive research process and by conducting semi-structured interviews with the team members. Findings: In all research steps, the inclusive research team decided together on the content and procedures of the studies and on role division. Reflecting on SDM resulted in an overview of the types of decisions made, the information needed and the processes involved in making shared decisions. Furthermore, the team provided an account of how SDM positively impacted the quality of the studies and empowered people with intellectual disabilities. Conclusions: This study provides insights into types of decisions, SDM processes and their impact on research. The insights give an overview of opportunities and key components of SDM that can foster conceptual clarity of SDM in inclusive research. In practice, inclusive research teams can use these insights to advance successful ways of sharing power in decision making, having an impact on the quality of research and empowering people with intellectual disabilities.