Adults with learning disabilities and their parent carers feel more confident, empowered and valued after contributing to the development of health research studies, public health experts at Brunel University London and St George’s University of London have found.
Patient and Public Involvement (PPI) is integral to health research in the UK. Patients draw on their experiences as healthcare service users in order to help shape healthcare research, development and delivery by professionals, and essentially become a more active partner in their own treatment and wellbeing.
However, the experiences of intellectually disabled individuals and carers are often overlooked on the grounds that these service users can be ‘hard to reach’, or ‘too difficult’ to involve in research studies.
Brunel Professor of Gerontology and Public Health, Christina Victor, and colleagues at St George’s, used group interviews to find out how adults with intellectual disabilities and parent carers found the experience of their PPI involvement in a recent study which evaluated the effectiveness of annual health checks for intellectually disabled adults.
Feedback was generally very positive. Their public involvement role in the study made them feel valued and that their voices were important, rather than perceiving their involvement to be tokenistic, or that their contribution was not respected as valid and important by the research team.
Parent carers saw themselves as empowered collaborators, rather than just contributors toward what the researchers wanted to explore, and both groups noted that being involved in the dissemination of research findings was important: they had an overwhelmingly positive experience attending a conference where findings were presented.
“I’ve loved [taking part in research] but others don’t think we can, you know … because of our learning disability … they don’t understand,” said one participant, with another adding: “They assume the worst, if you know what I mean. It’s like, oh, this person’s got a learning disability, don’t think they can do that. They judge you before they even know you.”
Professor Victor and colleagues explained that the impact of the participants on their recent study was vital, because their input put the findings into context.
For example, when a database analysis highlighted that some adults with intellectual disabilities were not having diagnostic blood tests or flu vaccinations at their doctor’s surgery, both those with disabilities and their carers gave valuable inside into their personal experience with severe needle phobias and how such factors might influence low rates of tests and vaccinations.
Consistent with previous inclusive qualitative studies, Professor Victor and colleagues found that these study participant groups required extra time to allow for effective communication, recapping and summarising what had happened in previous meetings, processing questions and formulating responses. However, the increased time required was more than outweighed by the benefits of including adults with intellectual disabilities and their parent carers, the insights they provided on this topic and the identification of future research projects and priorities.
''I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study' is published in the Journal of Intellectual Disabilities.
Joe Buchanunn, Media Relations