Having choices and being supported: a co-research project about independence and Down syndrome

Independence can look different for each person. People with Down syndrome are living longer, and many get support from professionals to grow their independence. We wanted to understand how health professionals support independence for people with Down syndrome. We used co-research method where team members with Down syndrome collaborate on all stages of the research process. Co-researchers interviewed 8 health professionals and 2 with Down syndrome about independence. We asked about communication, daily life skills, health, employment, and independent living. Using an inclusive process, we analyzed our data by coding transcripts, finding big ideas and patterns, then came up with themes. We found that health professionals mostly support independence for health, communication, and life skills. They want adults with Down syndrome to be independent, make choices, and get help from others when needed.