Disability Community Perspectives on Participation in Research and Studying Positive Health

About the Positive Health Study:

We studied how to make health research more inclusive for children with disabilities and their caregivers by focusing on two things:
(1) what “positive health” means to adults and caregivers with lived experience of childhood disability, and (2) how these perspectives can help researchers make their work more relevant to the disability community.

Key Findings:

• The lived experience of childhood onset disability shapes how people define and understand “positive health.”
• Researchers can take specific steps to make their work more relevant and useful for people with childhood onset disabilities and their families.

Brief background:

Many children and adults in the US live with disabilities, but they are often underrepresented in research. At the same time, ideas about health are changing to focus not just on illness, but on overall health and well-being. However, definitions of health that focus on the absence of disease do not always reflect the experiences of people with lived experience of childhood disability.

What we learned: 

We asked 426 adults and caregivers with lived experience of childhood disability questions about their participation in research. We also reviewed discussions from advisory board meetings with 13 adults with lived experience of disability, where they shared their perspectives on ‘positive health’ and what helps or makes it harder for the disability community to take part in research. Their answers revealed the following: 

(1)    Even though more than 80% of people with lived experience of disability think health outcomes research is important, only 26% of adults and 23% of caregivers have participated in research that was not studying disability.
(2)    23% of adults and 23% of caregivers with lived experience of disability have been excluded from research because of a disability.
(3)    By expanding the idea of “positive health” to include lived experience of childhood disabilities, researchers can make it more meaningful people with disabilities and their families. 
(4)    Including people with disabilities in all stages of research can help ensure findings reflect real-life experiences and support their role in shaping decisions.

What this means for families and individuals with CP:

Families and individuals with disabilities, including CP, can play an active role in shaping research by helping to make sure studies reflect real-live needs, priorities, and experience.

What stakeholders can do about this:

Stakeholders including individuals with disabilities, their families, doctors and researchers can recognize that “positive health” does not need to be defined by absence of medical conditions or disease. Instead, it can include things like independence, participation in school or community, emotional well-being, and quality of life.

Implications for future research:

Future research should include people with lived experience of childhood onset disabilities at every stage to ensure the work is meaningful and impactful to the disability community. One way to accomplish this goal is for future studies can make it easier the disability community to participate in research by addressing barriers like time and accessibility.