Projects focusing on African refugee community, kidney disease awarded CTSI community partnership grants

Projects focusing on family planning with the region’s African refugee community and kidney transplant access for Black Western New Yorkers have been awarded funding from the University at Buffalo Clinical and Translational Science Institute (CTSI) Community Partnership Development Seed Grant Program. Now in its second year, the program provides funding to support the planning of community-based participatory research partnerships and engagement of communities in research.

The goal of the seed grant awards is to prepare community-academic partnerships to successfully collaborate on the design of research projects, specifically those that address health disparities and aim to improve health equity. Grant funding is awarded to teams of researchers and community partners in which each partner has an essential role in the project.

“We are so pleased with this year’s awardees,” says CTSI Community Engagement Core Director Laurene Tumiel-Berhalter, PhD, Director of Community Translational Research, Department of Family Medicine, Jacobs School of Medicine and Biomedical Sciences. “The projects each fit the aim of the program — to support the development of academic-community research partnerships that together will advance knowledge through research that is meaningful and impactful to the community.”

The following projects were awarded Community Partnership Development Seed Grants for the 2021 funding cycle:

Reproductive Health Advisory Committees for the African Refugee Community (RHACARC)    

University Lead: Kafuli Agbemenu, PhD, MPH, RN, School of Nursing

Community Lead: Sondra Dawes, BS, Priscilla Project, Jericho Road Community Health Center

Co-Investigator: Christopher St. Vil, PhD, School of Social Work   

The goal of the RHACARC is to provide community insights into family planning needs in Western New York’s African refugee community, and to facilitate the design of culturally relevant interventions that increase family planning uptake. On a more global level, the project aims to develop innovative methods to increase the engagement of the African refugee community in research.

“To achieve our goal, we will assess family planning needs in the African refugee community to provide recommendations for novel, culturally congruent health services and programs,” explains Agbemenu. “Essential to this work will be the recruitment of two community advisory committees comprised of African refugee members with strong ties in the Congolese, Somali-Bantu, Rwandese and Burundi communities. We have had an ongoing partnership with Priscilla Project, and will collaborate with them again to recruit committee members.”

Dawes, the project coordinator for Jericho Road's Priscilla Project, says the organization "recognizes the need to hear community members' needs regarding family planning, especially in the African refugee community. We are excited to be the community partners for this project and hope to be able to utilize this research to improve our programming."

In addition to African refugee community members, the committees will include local refugee and immigrant community support organizations, and UB researchers, and will allow for continued efforts towards equitable and responsive healthcare and research.

“A particularly marginalized group in the United States is that of African refugee women,” says Agbemenu. “Buffalo has resettled over 10,000 refugees since 2001, with African refugees being one of the largest resettled populations. Despite their increasing numbers, and contribution to the Buffalo economy, they are seldom represented in the research literature, and their health status in the US being mostly unknown.”

To learn more about the project, read some of Agbemenu’s recent research on reproductive health in African refugee women: “Family Planning Trends Among Community-Dwelling African Refugee Women”; “Reproductive Health Outcomes in African Refugee Women: A Comparative Study”; and “Reproductive Health Decision-Making Among US-Dwelling Somali Bantu Refugee Women: A Qualitative Study.”

Co-Creating Solutions to Enhance Kidney Transplant Access of Black Western New Yorkers with End-Stage Kidney Disease

University Lead: Liise K. Kayler, MD, MS, Program Director, Kidney and Pancreas Transplantation; Chief of the Division of Transplant Surgery, Department of Surgery, Jacobs School

Community Lead: Barbara Breckenridge, Founder, Western New York Kidney Disease and Transplant Support Group, Patient Advisory Committee (PAC) Western New York Regional Advisor, IPRO ESRD Network of New York Partner and Health Disparities Liaison, Fruit of the City

This project aims to engage community stakeholders in a transplant advisory board to address disparities in kidney transplant access experienced by Black Western New Yorkers with end-stage kidney disease. The advisory board will include diverse individuals with kidney disease and their families, all of whom will focus on identifying and prioritizing kidney transplant access barriers and brainstorm potential solutions.

The board will present community-driven solutions to other community and clinical stakeholders — such as patients and families, living donors, dialysis social workers, and ECMC transplant clinicians — to determine feasible options for future partnered research and initiatives.

For Kayler and Breckenridge, the project is another important step in continuing what they call their “life’s work”: helping everyone who needs a kidney transplant to receive one.

“Before the award, we worked separately,” says Kayler. “Barbara was in the community sharing her experience as a transplant recipient. I was at ECMC as transplant surgeon and division chief. When we combined forces, the research concept was obvious. We simply continued working on a problem we had both been tackling for decades.”

“Our impact is measured by equitable access to kidney transplantation in Buffalo,” says Breckenridge. “We are building a peer mentoring program. We are developing educational products — readable print materials and short educational videos. We host virtual support meetings and run a private Facebook group.”

Next, Kayler and Breckinridge plan to craft a grant application to fund a trial of a digital education and peer mentoring intervention tailored to African Americans to address disparities in access to live donor kidney transplantation.

To join the project’s group of kidney transplant recipients, people seeking transplants, donors, and care partners, or for more information on the project or Facebook group, email spelino@ecmc.edu.

To learn more about the topic, read some of Kayler’s recent research on kidney transplants: “Educational Animations to Inform Transplant Candidates About Deceased Donor Kidney Options: An Efficacy Randomized Trial”; “Opinions of African American Adults About the Use of Apolipoprotein L1 (ApoL1) Genetic Testing in Living Kidney Donation and Transplantation”; and “Describing Barriers and Facilitators for Medication Adherence and Self-Management Among Kidney Transplant Recipients Using the Information-Motivation-Behavioral Skills Model.”

Visit the CTSI websitefor more information on the Community Partnership Development Seed Grant Program. Read about the inaugural 2020 awardees here.