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.
Aim 1: In partnership with stakeholders, adapt extant T&R Forum protocol and materials for young adults with IDD-MH and families and develop Transforming Research Forum protocol and materials for researchers.
1.a. Provide a process for young adults with IDD-MH 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 partnership and dissemination approaches that are inclusive and culturally and linguistically appropriate for this population.
1.b. Facilitate researcher knowledge of:
The value of partnering with young adults with IDD-MH and families in CER.
Culturally and linguistically appropriate approaches to engage, partner with, and disseminate information on CER to this population.
Aim 2: Iteratively implement, evaluate, and revise the forums with stakeholders via the Center for START Services and the START network, a community-based best-practice model of supports for young adults with IDD-MH.
Aim 3: Create and disseminate strategies for culturally and linguistically appropriate CER partnerships to young adults with IDD-MH, families, and researchers.
Our project design incorporates principles of community-engaged research, linguistic and cultural competence, universal design for learning, and positive psychology. Year one, our team will: 1) Adapt extant T&R Forums for young adults with IDD-MH and families; 2) Develop Transforming Research Forums; 3) Train experienced professionals to implement T&R Forums. Year two: 4) Implement and evaluate two Transforming Research Forums with the National Research Consortium, a collaborative of IDD-MH researchers; 5) Implement and evaluate four T&R Forums across the START Network; 6) Integrate input from forums to develop CER strategies.
Stakeholders are engaged across three levels. Our leadership team includes: Watkins and Peace, two young adults with IDD-MH; Jessica Kramer, Associate Professor; Tawara Goode, Director, Georgetown University National Center for Cultural Competence; Joan Beasley, Director, Center for START Services & Research Associate Professor. The project will receive guidance from the IDD-MH Research Partnership Advisory Board. We will engage additional young adults with IDD-MH, their families, and IDD-MH researcher via the T&R and Transforming Research Forums. We will disseminate the culturally and linguistically appropriate partnership and dissemination strategies generated during the forums to outside organizations to enhance their awareness of the mental health needs and priorities of young adults with IDD and their families, and advance continued research in this area.
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.