Active involvement of people with intellectual disabilities in health research - A structured literature review.
People with ID can help design health studies, but consent rules, money, and gatekeepers still block the door.
01Research in Context
What this study did
Frankena et al. (2015) read 26 papers about letting people with intellectual disability help plan health studies. They looked for how it was done, what helped, and what got in the way.
The team did not run a new experiment. They simply mapped what others had tried.
What they found
Inclusive research is possible. When people with ID help, teams feel the work gets better.
Big hurdles stay: tricky consent rules, tight money, and ethics boards that say no.
How this fits with other research
van der Miesen et al. (2024) counted real UK health studies. Nine out of ten still locked out adults with ID. Their hard numbers back up Kim’s warning that barriers are real.
Thompson et al. (2018) asked the co-researchers themselves. Adults with ID said they liked the job and learned new skills. This gives Kim’s claim a friendly voice.
Brodeur et al. (2025) point at gatekeepers. They show that staff and family decide whether adults with ID even hear about a study. Kim wanted more stakeholder work; Madison tells you to start with the gatekeeper.
Matson et al. (2011) watched a study die. Only seven of every hundred consent forms came back. Their story matches Kim’s list of barriers and shows what low return looks like in the field.
Why it matters
You may run studies or teach consent skills. Use Kim’s map to plan extra time, plain-language forms, and gatekeeper chats before you start. Add visual aids and partner with self-advocate groups. Good front-end work turns “excluded” into “included” and gives your data real-world weight.
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02At a glance
03Original abstract
Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnstein's ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.
Research in developmental disabilities, 2015 · doi:10.1016/j.ridd.2015.08.004