‘Step into her world’: Including the voices of learning disabled children and young people in research

This study was motivated by a desire to identify and co-produce effective and ethical ways of including the voices of learning disabled children and young people, including those who are non-verbal, non-speaking or minimally verbal, in research. We interviewed 12 parents of children with chromosomal learning disabilities and 6 professionals working with learning disabled children, and we also observed 9 learning disabled children and young people in classroom settings. Transcripts and field notes from these (n=27) interviews and observations were then analysed using Template Analysis. We identified ideas regarding the most effective communication and data collection strategies for this group; thoughts on the challenges to including learning disabled voices in research; ethical considerations; benefits of inclusion to the children and young people themselves; and the characteristics and experience required to be an effective researcher in this area. There was a good consensus that it would be highly valuable to develop more innovative and inclusive approaches to research and that it is vital that a careful, ethical and co-produced approach is taken.