Adults with Intellectual Disabilities and their Carers as Researchers and Participants in a RCT
Article first published online: 23 AUG 2011
© 2011 Blackwell Publishing Ltd
Journal of Applied Research in Intellectual Disabilities
Volume 25, Issue 1, pages 1–10, January 2012
How to Cite
Turk, V., Leer, G., Burchell, S., Khattram, S., Corney, R. and Rowlands, G. (2012), Adults with Intellectual Disabilities and their Carers as Researchers and Participants in a RCT. Journal of Applied Research in Intellectual Disabilities, 25: 1–10. doi: 10.1111/j.1468-3148.2011.00643.x
- Issue published online: 7 DEC 2011
- Article first published online: 23 AUG 2011
- Accepted for publication11 July 2011
- inclusive methodology;
- people with intellectual disabilities;
- randomised controlled trial
Background This article describes the process of including people with intellectual disabilities (ID) and carers of people with ID as researchers and participants in randomised controlled trial (RCT) research. People with ID are rarely involved in research about their health, either as researchers or participants. Carers are often included as research informants, but family carers are rarely involved as researchers.
Method Four teams of researchers each comprising a researcher with ID, a supporting professional and a carer researcher, were recruited to complete a health intervention RCT. Accessible measures were selected and/or devised. Baseline interviews were completed by researchers with ID and/or carers of people with ID by asking participants with ID and/or carers of the participant about the health of the person with ID. Follow-up health interviews were administered after the intervention had been in place for a year.
Results The researchers completed 331 interviews with carers and 196 with participants with ID. Over 50% of participants with ID completed baseline assessments. Positive feedback on the process and outcomes was given by the researchers involved.
Conclusion The inclusion of people with ID both as researchers and as participants was achieved through an appropriate design, strong research partnerships, adequate and flexible resources, promotion of teamwork and a strong task focus.