A training program to qualify people with intellectual disabilities for inclusive research

Abstract

Background Inclusive research aims to involve people with intellectual disabilities (ID) with their views and values in all steps of the research process. But there is a lack of published training programs that address the qualification of people with ID for their roles as co-researchers. Objectives The aim was to develop a training program, based on constructivist didactics, in order to empower people with ID to act as initiators of health-related research, interviewers, data analysts and authors. In addition, the program aims to promote social self-organization and health literacy. The program consists of four steps: 1) Recruiting, relationship and team building; 2) Analysis of communication skills; 3) Choice of topic and formulation of a research question relevant to the lifeworld of the co- researchers 4) Exercises, carried out with an open, flexible approach, taking into account the individual biographies, knowledge, skills and interests of the team. Professional researchers moderate this process and promote the activation of knowledge and experiences. The whole process comprised weekly team meetings over a period of 7 months. Results The co-researchers were successfully empowered to deal with new kinds of demands and tasks. As of March 2020, the co- researchers selected pain as their topic and successfully formulated research questions, developed a guideline for semi-structured interviews and acquired essential interviewing skills. Data collection and analysis are still pending. Conclusions The implemented inclusive research approach pursued here, offers opportunities for generating research findings that are more relevant for the target group and their lifeworld. Consequently, professionals can better address the needs of their clients and develop tailored interventions. For the involved co-researchers with ID the training program seems to be successful in empowering them in decision-making and in reflecting on their own and other's health-related needs. Key messages People with intellectual disabilities can successfully be qualified as co-researchers with a 7-months weekly training program. The training program helps the co-researchers in reflecting on their own and other’s health-related needs.