Including people with learning disabilities as researchers and participants in RCTs is possible

our voice

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.

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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