Community-Engaged and Inclusive Research with Individuals with Intellectual and Developmental Disabilities
Bottom Line
Individuals with intellectual and developmental disabilities and people from other underserved populations should be partners in research projects designed to impact their daily lives.
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Group of people from the Northern Arizona Community of Practice Transition Team meeting.
Through my research efforts, I work to include individuals from underserved populations as partners on projects designed to address their health inequities. There are many terms used to describe this approach including action research, participatory action research, community-engaged research and community-based participatory research. One approach that is specific to individuals with intellectual and developmental disabilities (IDD) is called inclusive research. Inclusive research includes five principles:
The research problem must be one that is owned (not necessarily initiated) by people with IDD.
It should further the interests of people with IDD; researchers without disabilities should be on the side [allies] of people with IDD.
It should be collaborative—people with IDD should be involved in the process of doing the research.
People with IDD should be able to exert control over process and outcomes.
The research question, processes and reports must be accessible to people with IDD
Through the American Association on Intellectual and Developmental Disabilities, I have connected with other researchers using community-engaged and inclusive research approaches. We published an article on lessons learned from inclusive research projects.
Williamson, H. J., van Heumen, L., & Schwartz, A. E. (2020). Photovoice with Individuals with Intellectual and/or Developmental Disabilities: Lessons Learned from Inclusive Research Efforts. Collaborations: A Journal of Community-based Research and Practice, 3(1), 8. DOI: http://doi.org/10.33596/coll.45
The following article reviews strategies for completing inclusive research and action research with individuals with IDD during COVID-19.
Ahlers, K.P., Ayers, K.B., Iadarola, S., Hughes, R.B., Lee, H.S., & Williamson, H.J. (2021). Adapting participatory action research to include individuals with intellectual and developmental disabilities during the COVID-19 global pandemic. Developmental Disabilities Network Journal, 1(2), 22-31. https://digitalcommons.usu.edu/ddnj/vol1/iss2/5
Southwest Health Equity Research CollaborativE
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The goal of the Southwest Health Equity Research Collaborative is to promote community and university partnerships to identify and find solutions for health inequities in the Southwestern United States. We recently produced a video series titled, Stories of Community-Engaged Research, which highlights the benefits of community-engaged research through the stories of successful partnerships. Lessons learned from the video series are also included in our manuscript titled Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences.
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SHERC Community Engagement Core Framework for Action
Within CHER, I am a member of the Community Engagement Core of the Southwest Health Equity Research Collaborative (SHERC). The overall goal of SHERC is to increase basic biomedical, clinical, and behavioral research at NAU to address health disparities among diverse populations of the Southwestern United States. The SHERC Community Engagement Core’s overall goal is to cultivate and sustain productive collaborations and partnerships with community-based organizations to foster community awareness of and participation in health disparities research
The overall goal of SHERC is to increase basic biomedical, clinical, and behavioral research at NAU to address health disparities among diverse populations of the Southwestern United States.
SHERC collaborators recently published an article on community-engaged research. The abstract and article information are below.
Marginalized communities have a documented distrust of research grounded in negative portrayals in the academic literature. Yet, trusted partnerships, the foundation for Community-Based Participatory Research (CBPR), require time to build the capacity for joint decision-making, equitable involvement of academically trained and community investigators, and co-learning. Trust can be difficult to develop within the short time between a funding opportunity announcement and application submission. Resources to support community- and academic-based investigators’ time to discuss contexts, concerns, integration of expertise and locally acceptable research designs and data collection are limited. The National Institutes of Health (NIH) funded Center for American Indian Resilience and the Southwest Health Equity Research Collaborative have implemented an internal funding mechanism to support community and academic-based investigators’ travel cost and time to discuss complementary areas of interest and skills and to decide if moving forward with a partnership and a collaborative grant proposal would be beneficial to the community. The rationale and administration of this Community-Campus Partnership Support (CCPS) Program are described and four examples of supported efforts are provided. Centers and training programs frequently fund pilot grants to support junior investigators and/or exploratory research. This CCPS mechanism should be considered as precursor to pilot work, to stimulate partnership building without the pressure of an approaching grant application deadline
SHERC is supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award Number U54MD012388.
Physical Activity among women incarcerated in jail
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Engaging in physical activity can have immediate benefits, including reduced anxiety and better sleep. However, women incarcerated in jail do not always take advantage of physical activity opportunities while incarcerated in jail. This project is working in partnership with a local jail facility to increase use of opportunities for physical activity amongst the women incarcerated in jail.
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Ricky Camplain with Coconino County Detention Facility Representative
Over the past 40 years, the US has experienced an unparalleled epidemic of incarceration. More than 9 million Americans cycle in and out of jail each year. Although more men are incarcerated compared to women, the rate of growth for women imprisonment is twice that of men. Coconino County Detention Facility (CCDF) is of particular interest because it caters to the detention needs of a diverse rural population and provides an example of racial and sex disparities in Arizona Jails. Among women incarcerated in CCDF, there are high reports of anxiety and poor sleep quality. A single bout of moderate-to-vigorous PA improves anxiety symptoms and improves sleep on the day it is performed. Despite these benefits, physical inactivity is one of the most common cardiovascular risk factors experienced by incarcerated individuals and 71% of women incarcerated at CCDF reported not regularly attending time dedicated for recreational PA (rec-time). The scientific objective of the proposed mixed-methods, descriptive research is to estimate rec-time attendance and PA levels as well as identify facilitators and barriers to being physically active among women incarcerated in jail. Funding of this pilot project will allow preliminary research and may identify points of intervention to promote PA among women in jail facilities. Motivating individuals to attend and be physically active during rec-time may improve health conditions among this population. Successful promotion of PA among this population may provide an opportunity to adapt the intervention to other jail facilities of which there are 3,200 such facilities in the US. This project is funded as a SHERC Pilot Project grant. SHERC is supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award Number U54MD012388. This community-engaged research project is being led by Dr. Ricky Camplain.
The study team recently published an article on adapting a physical activity observation tool for use in jail settings.
Center for Health Equity Research
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Northern Arizona is a very diverse area and in order to help identify the priorities for our northern Arizona based program, we spent time listening to community members and reviewing data to identify the top health and wellness priorities for Northern Arizona.
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Applied Research and Development Building at NAU Campus
I work at the Center for Health Equity Research (CHER) and in order to guide our priorities for CHER, we completed a regional health equity needs and assets assessment with community stakeholders. The full report can be accessed by clicking the link below.
Sanderson, K., Williamson, H.J., Eaves, E., Barger, S., Hepp, C., Elwell, K., Camplain, R., Winfree, K., Trotter, R.T., & Baldwin, J.A. (2017). Advancing welling in Northern Arizona: A regional health equity assessment. Retrieved from http://cher.nau.edu/wp-content/uploads/2017/09/Wellbeing-in-Arizona_Final-9_22_17.pdf
We also published an article from the needs assessment exploring the role of culture when attempting to integrate care in rural settings.
Eaves, E.R., Williamson, H.J., Sanderson, K.C., Elwell, K., Trotter II, R.T., & Baldwin, J.A. (2020). Integrating behavioral and primary health care in rural clinics: What does culture have to do with it? Journal of Health Care for the Poor and Underserved, 31 201-217. ProjectMuse, doi: 10.1353/hpu.2020.0018
Institute for Translational Research
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Too often, the results of research projects don’t reach the communities that could use the research results. This program works to train graduate students from different backgrounds on how to bring research results directly back to communities to impact day-to-day activities. These papers describe the lessons learned from the program. I was also part of a team supported by the Institute to complete a community-engaged research project focused on addressing the needs of youth in the foster care system who are aging out of care.
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I have worked for the Institute for Translational Research as a graduate assistance and now serve as an Academic Mentor for ITRE sponsored community-engaged research projects. The following are abstracts/publications from this project.
Paper 1 Summary: Background. Translational research seeks to build bridges between research and practice to address public health issues efficiently and effectively. The purpose of this article was to evaluate a newly formed institute that provided graduate students and adolescent behavioral health community professionals with a translational research service-learning opportunity through the creation of a community–university mentoring partnership. Goals of the team-based research mentorship approach included (1) providing students the skills for implementing translational research, (2) providing research opportunities for community agencies to enhance operations and to encourage ongoing research involvement, and (3) developing relationships between university faculty and community agency professionals for further research collaborations. Method. The Institute used the National Institute on Drug Abuse’s Mentoring Mosaic to select a diverse group of community and academic mentors. The research mentorship experience of the initial cohort was evaluated based on the Research Mentorship Conceptual Framework and Self-Assessment Tool. Results. As a direct result of the research mentorship, outcomes for the academic and community mentors and scholars (i.e., those seeking a graduate certificate) included improved working relationships/networking and research experience. Through experiential learning, scholars also discovered career trajectory clarity, the need for community collaboration in research, opportunities for continuing professional development, a greater understanding of public health competencies and how they align with community-based research, and skill development in best practices for translational research. Conclusion. The team mentoring approach is a form of pedagogy that holds promise to enhance translational research and community-based research efforts while developing public health competencies.
Young, B.R, Williamson, H.J., Burton, D., Levin, B.L., Massey, O.T., & Baldwin, J.A. (2015). Challenges and benefits in designing and implementing a team-based research mentorship experience in translational research. Pedagogy in Health Promotion: The Scholarship of Teaching and Learning. 1(3), 1-15. DOI: 10.1177/2373379915600174
Paper 2 Summary: Community-university partnerships are frequently used to enhance translational research efforts while benefiting the community. However, challenges remain in evaluating such efforts. This article discusses the utility of applying the contextual and interactive model of community-university collaboration to a translational research education program, the Institute for Translational Research in Adolescent Behavioral Health, to guide programmatic efforts and future evaluations. Institute stakeholders from academia and the community completed in-depth interviews querying their expectations and experiences in this collaboration. Key quotes and themes were extracted and analyzed based on the constructs within the 3 phases of the model. The findings note specific themes for future evaluations. Overall, the contextual and interactive model of community-university collaboration proved a useful framework to guide the process evaluation of the Institute. Findings suggest possible strategies for the successful development, evaluation, and sustainability of community-university partnerships.
Paper 3 Summary: An innovative approach to research education that integrates the theory and principles of implementation science, participatory research, and service learning in the area of adolescent behavioral health is presented. Qualitative interviews and surveys of program participants have been conducted to assess the program’s curricula, service-learning partnerships, student (scholar) satisfaction, and views of community partnerships and academic mentors. The Institute has experienced the successful completion of its first and second cohorts and enrollment of a third cohort of scholars. Community partners are utilizing results of service-learning projects to influence agency operations. Institute scholars have identified research and service learning experiences as key factors in the decision to apply to the Institute graduate certificate program. The availability of tuition support is identified as valuable but not ranked as the most important reason for scholar interest in the program. Academic mentors report positive relationships with community agencies. Future iterations of the program will expand options for distance learning and alternatives to traditional graduate education for community-based scholars. Community partner agency capacity for participation is expected to change over time. Methods are being identified to both sustain existing partnerships and develop new community partnership relationships.
Paper 4 Summary: While some research training programs have considered the importance of mentoring in inspiring professionals to engage in translational research, most evaluations emphasize outcomes specific to academic productivity as primary measures of training program success. The impact of such training or mentoring programs on stakeholders and local community organizations engaged in translational research efforts has received little attention. The purpose of this evaluation is to explore outcomes other than traditional academic productivity in a translational research graduate certificate program designed to pair graduate students and behavioral health professionals in collaborative service-learning projects. Semi-structured qualitative interviews with scholars, community mentors, and academic mentors were conducted regarding a translational research program to identify programmatic impacts. Interviews were transcribed and coded by the research team to identify salient themes related to programmatic outcomes. Results are framed using the Translational Research Impact Scale which is organized into three overarching domains of potential impact: (1) research-related impacts, (2) translational impacts, and (3) societal impacts. This evaluation demonstrates the program's impact in all three domains of the TRIS evaluation framework. Graduate certificate participants (scholars) reported that gaining experience in applied behavioral health settings added useful skills and expertise to their present careers and increased their interest in pursuing translational research. Scholars also described benefits resulting from networks gained through participation in the program, including valuable ties between the university and community behavioral health organizations. This evaluation of the outcomes of a graduate certificate program providing training in translational research highlights the need for more community-oriented and practice-based measures of success. Encouraging practitioner involvement in translational research is vital to translate knowledge into practice and to enable practice-based needs to inform research and policy. A more flexible approach to measuring programmatic success in research training programs can help bridge the knowledge translation gap.
Presenting Foster Care Institute Project
Paper 5 Summary: Youth aging out of the foster care system have well-documented challenges when transitioning to adulthood. Multiple transition services provide support in the transition process; however, limited research is available regarding youth’s perceptions of programming. In this pilot study, sixteen youth between ages 18 and 20 participated in semi-structured interviews, support mapping, and resiliency measurements to gather the experiences of the transition from foster care. Comparisons between those who chose initial transition supports and those who did not receive or delayed receiving transition supports were initially explored. Common themes emerged in participants’ needs and perceived resiliency regardless of transition support services. All youth reported relationship, trust, and concern for well-being as highly important characteristics in transition team members. A need for earlier transition programming, decision-making opportunities, and life skills courses were important themes in transition programming needs. Implications for policy, research, and practice are presented based upon findings.
Armstrong-Heimsoth, A., Hahn-Floyd, M., Williamson, H.J., Kurka, J.M., Yoo, W., & Rodriguez, De Jesus, S. (2020). Former Foster System Youth: Perspectives on Transitional Supports & Programs. Journal of Behavioral Health Services & Research. DOI 10.1007/s11414-020-09693-6