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Adults with intellectual disabilities and their carers as researchers and participants in a RCT

Adults with intellectual disabilities and their carers as researchers and participants in a RCT

Turk, Vicky, Leer, Geoffrey, Burchell, Sarah, Khattram, Sukhjinder, Corney, Roslyn and Rowlands, Gill (2011) Adults with intellectual disabilities and their carers as researchers and participants in a RCT. Journal of Applied Research in Intellectual Disabilities, 25 (1). pp. 1-10. ISSN 1360-2322 (Print), 1468-3148 (Online) (doi:https://doi.org/10.1111/j.1468-3148.2011.00643.x)

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Abstract

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.

Item Type: Article
Additional Information: [1] First published online: 23 AUG 2011. [2] Published in print: January 2012. [3] Published as: Journal of Applied Research in Intellectual Disabilities, (2012), Vol. 25, (1), pp. 1–10.
Uncontrolled Keywords: methodology, people with intellectual disabilities, randomised controlled trial
Subjects: B Philosophy. Psychology. Religion > BF Psychology
R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Pre-2014 Departments: School of Health & Social Care
School of Health & Social Care > Department of Psychology & Counselling
Related URLs:
Last Modified: 13 Dec 2019 11:10
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: None
URI: http://gala.gre.ac.uk/id/eprint/7350

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