Involving Children and Young People in Research

Disabled children and young people are often excluded from being involved in activities because of perceived difficulties with access, communication, and assumptions that their views may not be useful. However, they have the right to be involved in activities that are about them and should be afforded the same opportunities to get involved in research, as adults and their non-disabled peers.

PenCRU carried out a systematic review to bring together information about how disabled children and young people have been ‘involved’ in health-related research. Being ‘involved’ in this sense means being part of the research team, not being someone who is having research done ‘on them’, or ‘to them’. We brought together publications describing real examples, as well as papers describing researchers’ reflections and experiences. The review provides helpful practical tips to guide researchers who want to involve disabled children and young people in their research.

We also explored ways to involve disabled children and young people in our work at PenCRU. At present, we do not have resources to establish and maintain our own group, however we have worked successfully with young people with learning disability at Exeter College. We undertook an activity to create a resource for the Hospital Communications Project. The young people designed a poster that provides 4 key tips for staff working on children’s wards to improve communication with disabled children. The CATCh-uS Project has also worked with groups of young people at Southbrook Special School and Isca Academy in Exeter holding workshops for small groups of young people.

In addition, one young man with cerebral palsy has participated in project meetings and interviews for new staff; he has also taken up opportunities to be involved with the PenCLAHRC Public Involvement Group.

The work was funded by the University of Exeter Catalyst.

For more information about this study please get in touch.