Engaging young adults with IDD-MH and researchers in comparative effectiveness research
The goal of this project is to build the capacity of young adults with intellectual and developmental disabilities (IDD) who have mental health service experiences (IDD-MH), their families, and researchers to partner together in research.
Why is this project important?
All people have mental health challenges at some time. People with intellectual/developmental disabilities (IDD) also have mental health challenges. Mental health challenges are more common in people with IDD than people without disabilities. We don’t know enough about the best way to help young adults with IDD who use mental health services (IDD-MH). Many young adults with IDD-MH have their mental health treated by:
- Taking strong medications
- Taking many medications
- Going to a hospital or institution
- Physical restraint and/or seclusion
These treatments may make the mental and physical health worse or hurt people with IDD-MH. We don’t know enough about what young adults with IDD-MH want and need.
Some past and current research practices for people with IDD-MH have been both harmful and exclusionary. People with IDD-MH have been left out of research and in many instances research was done to them without their permission or understanding. Currently, people with IDD-MH are still left out of mental health research. While there may be many reasons for exclusion, a primary cause is that researchers lack information on the abilities, interests, and needs of people with IDD-MH and their families. Young adults with IDD-MH across all racial, ethnic, and cultural backgrounds need to be included in mental health research. This approach to mental health research is necessary to make sure that the interests, needs, and experiences of young adults with IDD-MH are at the forefront.
What will we do in this project?
We will hold “Truth & Reconciliation Forums” with young adults with IDD-MH and families. The forums will provide a process for these young adults and families to:
- Begin to reconcile experiences of marginalization and exclusion in research and practice.
- Acquire knowledge and skills to partner effectively in research.
- Create partnerships and dissemination approaches that are inclusive and culturally and linguistically appropriate for this population.
We will also hold “Transforming Research Forums” with mental health researchers in order to help them: :
- See the benefit of doing research with young adults with IDD-MH and their families for all
- Learn ways to include young adults with IDD-MH and their families effectively. Help make sure that everyone can understand and benefit from research information.
What will this project accomplish?
At the conclusion of the project, there will be an increased capacity of young adults with IDD-MH, their families, and researchers to partner in research that optimizes the mental health outcomes valued by this population. The project will create products and publications that will be disseminated to the public.
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This project is a collaboration of the University of Florida, Georgetown University National Center for Cultural Competence (NCCC), and the Center for START Services (CSS) at the University of New Hampshire, Institute on Disability.
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EA #15364).