Developing and implementing community based participatory health research with young adults with Down syndrome

PROJECT SUMMARY/ABSTRACT
Adults with Down syndrome (DS) face significant health disparities relative to the general population. However,
their perspectives are not well-represented in DS health research because almost no studies have included them
as direct respondents, especially in the U.S. Further, adults with DS from underserved communities (i.e.,
individuals of color; rural communities) experience even greater health disparities, yet they are underrepresented
in DS research, as are individuals with DS who have more extensive support needs. To enact change that
reduces health disparities and improves outcomes for adults with DS, including those who are underserved and
underrepresented in research, it is critical to reflect their perspectives and lived experiences. The proposed
project takes this step by using community-based participatory research (CBPR) and thus is also responsive to
NOT-OD-22-142. Using CBPR, this project partners with young adults with DS in the entire research process,
from development through dissemination, to ensure that it is meaningful and impactful to the DS community. This
proposal was developed with a national Steering Committee of 12 young adults with DS who identified the
following key topics: employment, community living, social opportunities, healthy living, and self-advocacy. These
topics align with a multi-construct, multi-dimensional model of health in DS (Santoro et al., 2023) and represent
specific constructs within the broader dimensions of social (employment, community living, social opportunities),
physical (healthy living), and mental (self-advocacy) health. To identify what impedes or facilitates these health
constructs, we will use the National Institute on Minority Health and Health Disparities Research Framework to
examine domains (biological, behavioral, physical/built environment, sociocultural environment, health care
system) and levels (individual, interpersonal, community, societal) of influence that shape their social, physical,
and mental health. Thus, this project aims to (1) explore the experiences of young adults with DS, including the
domains and levels of influence that impede or facilitate their social, physical, and mental health, (2) develop
and disseminate resources for the DS community about pathways to improve social, physical, and mental health,
and (3) develop and disseminate a toolkit for researchers to engage in CBPR with co-researchers with DS. We
will conduct individual, PhotoVoice-informed interviews with 45 young adults with DS (ages 18-35) including
individuals of color, individuals from rural communities, and individuals with varying support needs, and we will
identify patterns across (a) underserved backgrounds and (b) the extent of support needs. These findings will
inform the resources and dissemination methods developed in Aim 2. Each aim will be conducted in partnership
with the Steering Committee and an inclusive research team of co-researchers with and without DS. This
proposal aligns with the NIH INCLUDE DS Research Plan theme of “Living and Aging with DS” and its objective
to “increase inclusion of people with DS in research”. The knowledge gained will fill a gap in representing the
lived experiences of young adults with DS and will accelerate inclusive research to improve their health.

Grant Number: 1R21HD118449-01
NIH Institute/Center: NIH
Principal Investigator: Marie Channell