Reconciling the Past & Changing the Future

Engaging young adults with IDD-MH and researchers in comparative effectiveness research

 

Project Summary  

There is little to no comparative effectiveness research (CER) addressing the needs of young adults with intellectual/developmental disabilities (IDD) who have mental health service experiences (IDD-MH). Yet numerous barriers exist to conducting CER in partnership with young adults with IDD-MH and their families. Many young adults and their families report negative experiences with mental health care, and there is an overall lack of trust that engagement in MH research could lead to better practices and outcomes. Researchers may have explicit and implicit biases about the capacities of young adults with IDD-MH to partner in research. Meaningful engagement of young adults with IDD-MH in research is not possible without a process of reconciliation designed to acknowledge past exclusion and discrimination and make amends by forging mutually respectful and reciprocal partnerships in the conduct of CER.

Our project will offer a process of learning and reflection intended to foster reconciliation among young with IDD-MH and their families and support researchers to partner in CER. The project will adapt extant Truth and Reconciliation (T&R) Forums for this population and develop new Transforming Research Forums for researchers. Our long-term goal is to build capacity for researchers and young adults with IDD-MH and families to engage in CER.

COVID-19-Related Project Enhancement

This project has added three enhancement aims to its work. The project team will: 1) seek to gain an in-depth understanding of the experiences of families of young adults with intellectual and developmental disabilities who have mental health service needs and experiences in the context of COVID-19, and, 2) develop an analytical framework that considers the convergence of cultural contexts and intersectionality on COVID-19-related experiences and outcomes of young adults with IDD-MH and their families.

It will then partner with the START National Research Consortium on Mental Health in Intellectual and Developmental Disabilities (comprising multiple stakeholders including those with lived experiences) to apply the analytical framework to data collected about COVID-19 and other data in a national database.

Enhancement Award Amount: $139,999


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 involved.

  • 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 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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