Improving Health of Adolescents and Young Adults Focus of Pathway-to-Pilot Awardees

Last fall, 20 individuals from the University of Rochester Medical Center (URMC) and community organizations came together to learn about collaborative, community-driven research in the Community-Based Participatory Research (CBPR) training course. The course is co-administered by the University of Rochester Clinical & Translational Science Institute (UR CTSI) and Center for Community Health & Prevention. Two teams comprised of researchers and organization leaders received funding support of up to $15,000 for their community-partnered research with Pathway-to-Pilot awards. Both of this year’s projects focus on improving the health of adolescents and young adults (AYA).

Health Literacy and Community Informed Determinants of Self-Care Utilization for Health Promotion Among Adolescents and Young Adults

An estimated 90 million people struggle with health literacy in the United States. Low health literacy is closely linked to poor health outcomes, especially for preventable diseases like sexually transmitted infections (STIs). Research shows that adolescents and young adults, particularly women of color, face disproportionately high mortality rates from STI-related deaths compared to non-Hispanic white women. These disparities also extend to mental and behavioral health. Health literacy-based interventions that focus on self-care can support AYA women of color to develop the knowledge and skills needed for positive health outcomes.

With funding from the Pathway-to-Pilot awards, Danielle C. Alcéna-Stiner, PhD, RN, assistant professor at the University of Rochester School of Nursing, and Jackie Dozier, director of Community Health and Wellbeing at Common Ground Health, aim to develop youth-informed interventions that will empower AYA to make informed health decisions as they transition to adulthood. 

“Working with young Black and Latina girls in the community is crucial because it addresses systemic inequalities, empowers them to become positive change agents, provides vital support systems to navigate unique challenges they face, and contributes to a more equitable society by uplifting voices often marginalized due to race and gender bias,” shares Dozier. “Essentially, it helps them reach their full potential and contribute meaningfully to their communities.” 

The goals of their project, titled “Health Literacy and Community Informed Determinants of Self-Care Utilization for Health Promotion Among Adolescents and Young Adults, include:

• Identifying and exploring self-care utilization among adolescent and young adult populations (12-25 years of age) for health promotion and well-being
• Engaging AYA in grant proposal development and developing a community advisory board to guide survey measures, recruitment, and data dissemination

“One of the most exciting outcomes of our project is the opportunity to work directly with AYAs in co-developing a subsequent research proposal to further refine and test prototype interventions,” Alcéna-Stiner said. “This process reflects the equity lens at the heart of our collaboration, as we work together to build sustainable academic and community partnerships.”

The overall focus of the project is promoting health literacy for better decision-making, employing equitable CBPR approaches, and preparing for a R01-funded study to evaluate intervention effectiveness.

“My hope is that this project is sustainable and becomes a domino effect, so that those who have already engaged and participated in the project will become facilitators and/or educators and bring on others who can also carry this knowledge to other AYAs who are coming up behind them,” Dozier shares.

This project is funded by the UR CTSI.

Analysis of Stakeholder Feedback to Inform Coordinated Care for Adolescents and Young Adults with Cancer

AYA patients with cancer often experience a gap in age-appropriate coordinated services and support. As a result, research shows they have seen less improvement in survival compared to younger and older cancer patients. In addition, AYAs with cancer face unique challenges as cancer interrupts many of their developmental milestones — attending school, starting careers, family planning, and more. The project, “Analysis of Stakeholder Feedback to Inform Coordinated Care for Adolescents and Young Adults with Cancer," will increase supportive care resources and health-related social needs for this vulnerable group.

Project leads AnnaLynn Williams, PhD, assistant professor in the Division of Supportive Care in Cancer in the Department of Surgery at the URMC, and Lauren Spiker, executive director of 13thirty Cancer Connect, have designed the Needs Exploration, Experiences, Determinants and Support in AYAs (AYA-NEEDS) with cancer study. 13thirty Cancer Connect is a Rochester-based organization that has been providing peer-support to AYAs with cancer for more than 20 years. The cross-sectional survey-based study will characterize supportive care and health-related social needs and their impact on health-related quality of life in AYAs with cancer in the greater Rochester area.

“Receiving this grant is incredibly meaningful to me, both personally, as an AYA survivor, and professionally,” said Williams, a member of Wilmot’s Cancer Prevention and Control research program. “By identifying unmet supportive care and health-related social needs, we can then work together with 13thirty Cancer Connect and other community partners to intervene and improve their quality of life, enhance their support systems, and ultimately contribute to better health outcomes for the AYAs in our local community.”

This research will identify needs specific to the Rochester-area community and help determine if disparities exist by race/ethnicity, income, insurance, and more, and model future interventions to alleviate existing bias.

Goals of the project include:

• Promoting participation in the study by interacting with AYAs in a community setting
• Helping disseminate findings and gather feedback to inform how to design and implement any potential intervention based on findings.

The AYA-NEEDS study was cultivated as a partnership between the Wilmot Cancer Institute and 13thirty Cancer Connect. Collaboration from multiple stakeholders, including community members, a Wilmot Cancer Institute AYA Patient Advisory Board, URMC scientists and providers, and providers from Rochester Regional Health will be critical to its impact.

“We expect that the results of this initial study will be a springboard to continued investigation into the impact of various social drivers of health on this segment of cancer patients and survivors,” shares Spiker. “Dr. Williams and I are very grateful for the opportunity to have attended the Community-Based Participatory Research training program and to have received this important grant.”

This project is co-funded by Wilmot Cancer Institute's Office of Community Outreach & Engagement and the Division of Supportive Care in Cancer in the Department of Surgery.

If you would like more information about the Community-Based Participatory Research training program and CBPR Pathway-to-Pilot opportunity please contact Laura Sugarwala, MBA, RD, director of Community Health Partnerships at the Center for Community Health & Prevention.