Researchers’ roadblocks to including people with intellectual and developmental disabilities (DD) in research: Translational science and I/DD program leaders insights

TL;DR

Researchers face barriers like misconceptions and logistical challenges when including people with intellectual and developmental disabilities in medical research.

Contribution

The study identifies attitudinal and logistical barriers to including people with I/DD in research and proposes a survey based on a change management model.

Findings

Key barriers include attitudinal issues like assumptions about consent capacity and logistical challenges like accommodation costs.

Exclusion of people with I/DD is often due to lack of awareness and knowledge rather than insurmountable obstacles.

A survey based on the ADKAR® model was developed to address these barriers.

Abstract

People with disabilities in the US are now a health disparities population. Though 25% of US adults have a disability, only 5% of medical research grants are disability related. Knowledge about researchers’ perceived barriers to including people with disabilities in research has focused on a single disability/condition and thus has limited translational science applications. Our CTSA’s Disability as Difference: Reducing Researcher Roadblocks (D2/R3) project examined such roadblocks towards inclusion of people with intellectual and developmental disabilities (I/DD). I/DDs are broad, heterogeneous conditions that originate in childhood, have varying impact and function, and persist throughout the lifespan. Strategies that mitigate their under-representation in research will likely have general applicability to all disabilities. In D2/R3’s first phase we conducted semi-structured interviews with translational science and I/DD program leaders at ten US institutions about perceived barriers and facilitators to including people with I/DD in research. Interviews were held with 25 individuals from partnering Intellectual and Developmental Disabilities Research Centers, University Centers for Excellence in Developmental Disabilities, and Clinical and Translational Science Award programs. Collaborative thematic coding identified key themes as: attitudinal barriers (e.g., assumptions about consent capacity), logistical barriers (e.g., accommodation costs), health disparities, and generalizability concerns. Findings informed development of a survey based on Prosci’s ADKAR® model of change management’s five components: Awareness, Desire, Knowledge, Ability and Reinforcement. Exclusion appears to stem from researchers’ lack of awareness, misconceptions, and knowledge gaps rather than insurmountable obstacles.

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