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Adults with intellectual disabilities and their carers as researchers and participants in a RCT
- Authors:
- TURK Vicky, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(1), January 2012, pp.1-10.
- Publisher:
- Wiley
People with intellectual disabilities are rarely involved in research about their health, either as researchers or participants. This article describes how a project facilitated inclusion of adults with intellectual disabilities as researchers and participants in randomised controlled trial (RCT) research. The research study was an evaluation of the implementation of personal health profiles for people with intellectual disabilities and their carers, and was funded as part of a Department of Health consumers in research programme. It involved 4 teams of researchers, each comprising a researcher with intellectual disabilities, a supporting professional and a carer researcher. Researchers with intellectual disabilities and/or carers of people with intellectual disabilities gathered information through interviews with participants with intellectual disabilities and/or their carers. The article describes the context of the research, the design, how it was implemented and made accessible, recruitment, training and support, and research processes and outcomes. The authors discuss the project and conclude that the inclusion of people with intellectual disabilities as researchers and as participants was achieved through key factors including appropriate design, strong research partnerships and teamwork.
An evaluation of the implementation of hand held health records with adults with learning disabilities: a cluster randomized controlled trial
- Authors:
- TURK Vicky, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(2), March 2010, pp.100-111.
- Publisher:
- Wiley
Adults with learning disabilities (AWLD) have high health needs, yet have little involvement with their health care. This research assessed the impact of implementing a hand held health record, called the Personal Health profile (PHP), on GP consultations and on the health knowledge of AWLD and/or their carers. Forty GP practices were randomised to the PHP implementation, including a control group. Two hundred and one AWLD were interviewed at baseline and 163 followed up after 12 months intervention. Findings showed that annual consultation rates in the intervention and control groups at baseline were low (2.3 and 2.6 visits respectively), with a slightly greater increase occurring over the year in the intervention group averaging 0.6 visits per year compared with the control group. AWLD in PHP group reported more health problems at follow-up. AWLD liked their PHP (92%) but only 63% AWLD and 55% carers reported PHP usage. In conclusion, the authors found no significant outcomes were achieved by the intervention.