It is difficult to obtain a sufficient sample size when conducting research focused on individuals with IDD. This is due to the multiple causes of IDD, comorbidities, and comedication.


Cedarville University

Inclusive research differs from non-inclusive research in that it requires far more monetary and human resources. It also requires a large time and monetary commitment from all individuals involved. In order to ensure the purposes and tasks of each member are being fulfilled, the time line for completion is much longer than other, non-inclusive projects.

Limitations to Conducting Inclusive Research

Most of the research we have on pain and intellectual disability involves those with a mild to moderate disability, with very little research involving those with severe intellectual disability. 

Lack of Pain Research in those with Intellectual Disability

Barney, C. C., Andersen, R. D., Defrin, R., Genik, L. M., McGuire, B. E., & Symons, F. J. (2020). Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. Pain reports, 5(4), e821. https://doi.org/10.1097/PR9.0000000000000822

Challenges in pain assessment and management among individuals with intellectual and developmental disabilities


- It has been suggested that the deep relationships formed in inclusive research can be detrimental to the team
  - It can cause stress
  - May pose unique ethical challenges
   - Researchers may be unwilling or unable to manage

How Relationships Negatively Impact Inclusive Research

Inclusive research is not the only way individuals with ID can be involved in research and it should not be treated as if it were the best method. Not all research allows for an inclusive approach.

Inclusive Research isn't Always the Answer

Those with severe intellectual impairments cannot communicate their basic needs let alone consent to research. Not everyone with an intellectual disability is able or willing to be involved in research.

Inclusive Research Can Never be fully Inclusive

Without a clear framework for how to conduct inclusive research, the concept in itself may remain rhetorical. Inclusive research cannot be conducted properly if it lacks a clear protocol for involvement of all parties involved. 

Rhetorical Nature of Inclusive Research Policies

Lack of Sufficient Sample Size in IDD Research


There is no protocol for adapting quantitative sensory tests (QSTs) for individuals with disabilities. Some alternatives are to use measures that increase communication ability or do not require self reports.

Alternative Approaches to Measuring Pain in Individuals with Severe Intellectual Disability

While this population may present their symptoms of pain atypically, there is little reason to question or doubt that these individuals experience and express pain. Even if their pain is not acknowledged, they are still in need of pain treatment and management.

Learn Before

Related