Self-Advocates with Down syndrome Reflect on Their Role as Co-Designers and Co-Researchers on an inclusive research process

In 2020 the New Zealand Down Syndrome Association’s (NZDSA) leadership and advisory group for people with Down syndrome, known as STRIVE, decided to conduct research to understand how people with Down syndrome in Aotearoa New Zealand were coping with the COVID-19 pandemic and the first major lockdown. The presenters will discuss the team’s experiences and reflections within an inclusive research approach, where disabled and non-disabled individuals collaborated as co-designers and co-researchers to conduct research and publish their findings in an academic journal. During the presentation, the presenters will explain the reasons behind their decision to undertake research on a topic of their choice and of particular interest. They will also discuss how they utilised an inclusive research approach and highlight their active participation in every stage of the research process. Specifically, they will discuss their involvement in designing the research questions, choosing the design approach and method, recruiting participants, collecting and analysing data, drawing conclusions, preparing an academic article, publicising the findings, and advocating for impact. The presenters will also highlight the concept of reflexivity, which is the continuous process of self-reflection that researchers need to undertake to become more aware of the research process. They will also explain how reflexivity was beneficial as a team activity, as it enhanced the rigour and quality of the research, resulting in more robust findings. In addition, the presenters will provide a brief summary of the findings from their COVID-19 research.