There are specific difficulties in developing an evidence base for practice in supporting people with learning disabilities. There is general agreement that some degree of sprcialist services are required, but little agreement about the nature of these services or the best method of their delivery. It may be possible to transfer ideas directly from mental health services, but this may not always be the case as special needs may mean that results from mental health trials cannot be directly transferred. A trial comparing the outcomes associated with intensive and standard case management for example, found no differences in severe mental illness but improvements in outcomes for people with borderline intelligence after intensive case management.
There are also ethical concerns regarding capacity to understand involvement in trials and difficulties with gaining consent to that involvement.
In addition, specialist services for people with learning disabilities are currently delivered by multi-disciplinary team made up of professionals whose respective professions, although having a desire to engage with an evidence based approach, have differing histories and approaches to the use of empirical evidence as a basis for practice.
The researchers here set out to descrtibe in some detail, the process of including people with learning disabilities and their carers as researchers and participants in randomised controlled trial (RCT) research.
The researchers created four research teams to complete a health intervention RCT. Each team comprised of a researcher with learning disabilities, a supporting professional and a carer researcher. Using accessible measures, (existing and devised) the teams completed baseline interviews about the health of the person with learning disabilities and then follow-up interviews after the intervention had been in place for a year.
The research teams completed 331 interviews with carers and 196 with participants with learning disabilities. Over 50% of those team members with learning disabilities completed the baseline assessments. They received positive feedback on the process and the outcomes by those involved.
The authors conclude from their experience that the achievement of inclusion of people with learning disabilities as researchers and participants required “appropriate design, strong research partnerships, adequate and flexible resources, promotion of teamwork and a strong task focus.”
Adults with Intellectual Disabilities and their Carers as Researchers and Participants in a RCT, Turk v et al., in Journal of Applied Research in Intellectual Disabilities, 25: 1–10.
It is great to see how people are increasingly seeing the benefits inclusion in research and the valuable contribution that can be made by researchers who have a learning disability.
I have been fortunate enough to work alongside Anna Haigh & her colleagues in completing inclusive research looking at well-being in people with learning disabilities. You can watch the you tube film about this work here:
Dr David Newman
Clinical Director LD – RDaSH
Thanks for your comment David and the link to the video. Would be good to hear people’s thoughts on this and their own experiences of working alongside researchers with disabilities, john