‘It's really difficult because sometimes you want to be special and different and sometimes you just want to be like everybody else’: Including families of children with chromosomal learning disabilities in a longitudinal qualitative cohort study

Abstract The UK Economic and Social Research Council (ESRC) is considering developing a longitudinal qualitative cohort study of seldom‐heard families. This paper presents findings from a scoping study of best practice in qualitative longitudinal research focused on families with a child with a chromosomal learning disability. We conducted in‐depth online interviews with twelve parents and identified their views of research participation in relation to recruitment, retention, data collection and ethics. They identified barriers to and facilitators of participation in qualitative longitudinal research for themselves and their children. Their views, analysed using template analysis, were used to co‐produce a suite of recommendations for the ESRC. All participants welcomed the proposed research and believed that amplifying the voices of families with experience of learning disability could make a tangible difference to their experience and to public understanding of disability.