Parents as co‐researchers: a participatory action research initiative involving parents of people with intellectual disabilities in Ireland

Abstract

Accessible summary • Most adults with intellectual disabilities in Ireland live with their parents. • In this research some parents worked with us as researchers. We called them co-researchers. • They talked with groups of other parents about what life is like for them and how well services support them. • The co-researchers learnt new skills, and have started to talk with service providers about how they can support families better. Summary This paper evaluates a participatory action research (PAR) approach to conducting family research in Ireland. Drawing on PAR methodology it describes how parents of people with intellectual disabilities were recruited and trained to facilitate focus groups of parents in Ireland, in order to create an evidence base to support improved dialogue between parents and service providers. Its findings are that a PAR approach has considerable potential to contribute to improved understanding of the realities of family life with an adult with intellectual disabilities, particularly if plans to create a dialogue with service providers and to build sustainable networks of parents are included in the project.