Live Research Spotlight 8: Community Engagement

Background: In the US experience, Black women experience delayed diagnosis resulting in higher rates of cervical cancer mortality. For those 40-64 years old this is in part due to limited access, costs, and provider bias. Recently, the FDA approval HPV self-sampling and current innovative research efforts for clinical and simulated home-based HPV self-sampling are underway. Oftentimes, however, innovations are not disseminated equitably. To that end, we conducted a community-based participatory study using concept mapping to gather diverse perspectives to develop a salon-based HPV self-sampling intervention. Methods: We utilized GroupWisdom and REDCap online platforms for data collection from members of the Black Community Advisory Council of Tucson (Black CACTus). The Group Concept Mapping steps are: 1) Brainstorming statements in response to a prompt, 2) Sorting statements into categories according to each participant’s meaning, 3) Rating statements on importance and feasibility, 4) Review of the cluster map, and 5) Review of a draft/proposed intervention.
Results: Of the 10 participating Black CACTus members there were, 3 hairstylists, 4 salon clients, and 3 healthcare providers. All identified as Black women, with two also identifying as Latina and White. Participants ages ranged from 23-53 years old. A total of 39 statements resulted from brainstorming. From the sorting data, a six-cluster map was generated with a stress factor of 0.263. The clusters were labeled: 1) Program Promotion, 2) Insurance, Cost & Benefits, 3) Communication Considerations, 4) Information and Education, 5) Overall Logistics and Process, and 6) Sample Collection. Clusters (3) Communication Considerations and (6) Sample Collection had the highest average ratings for importance. The cluster rated the most feasible was “3: Communication considerations.” When importance and feasibility were considered together, clusters 3, 4, and 6 were among the highest-rated.
Conclusions:
Gathering the diverse perspectives of vested community members offers broader contextual and cultural considerations for a salon-based HPV self-sampling intervention. The results are strengthened by the consensus of the Black CACTus on the importance and feasibility of “communication considerations,” the “sample collection process” and “information and education.” The findings of this study will inform the development of a culturally and contextually appropriate salon-based HPV self-sampling intervention.

Author - Namoonga M. Mantina, MSPH, MBA, MSPH, MBA,
University of Arizona

Author - Kathleen Pryor,
University of Arizona

Author - Trevon Brooks,
University of Arizona

Author - Azaria Suero-Davis,
University of Arizona

Author - Adebola Adegboya,
University of Kentucky

Author - Itunu Sokale,
Baylor University

Author - Jennifer Hatcher,
University of Arizona

Background: Play is vital for adolescent physical, mental, and social development. Yet, many adolescents—particularly those with disabilities or from low-income backgrounds—are systematically excluded from typical playgrounds due to structural inequities and exclusionary design. This study used novel citizen science methods for engaging these communities to improve access to play for all.
Methods: Using the Stanford Our Voice method, a multi-sectoral partnership was formed with a local middle school, the county office of education, and an inclusive play nonprofit (Magical Bridge Foundation). 34 students from a low-income racial/ethnic minority area in Daly City, CA, including those from a special education class, completed an initial survey and three educational modules on health equity, inclusive design, and transportation equity. Students then used the Our Voice mobile app to document their access to play at a local playground specifically designed to be inclusive for all ages/abilities. During data collection, students with and without disabilities were grouped together to bridge perspectives. Their geotagged photos, text/audio data, and ratings were compiled into a report for review by students and multi-sectoral partners. Facilitated citizen scientist discussions allowed students to generate common themes and identify relevant stakeholders and feasible action steps.
Results: Students captured 111 photos and 113 comments of playground features rated as either positive (n=74), negative (n=10), or both (n=27). Students evaluated the playground’s accessibility for all ages/abilities (n=23) and for wheelchair users (n=15). Novel features highlighted by them were rest areas, the music zone, and social areas which could facilitate interactions between diverse visitors. Students discussed 17 overarching themes. While before the playground audit most students reported having little ability to influence community decisions, after discussions they generally reported enthusiasm for this type of direct student involvement. This activity led 12 students to present their findings to city officials (e.g., city mayor), who formally recognized their contributions and supported developing next steps for change.
Discussion: Our findings indicate how citizen science and multi-sectoral partnerships can serve as tools for overcoming barriers to engaging minority adolescents and bridging perspectives between such underrepresented populations and local decision-makers.

Co-Presenter - Vignesh Kumar,
Department of Epidemiology & Population Health, Stanford University School of Medicine, Stanford, CA

Co-Presenter - Sofia A. Portillo, BA,
Department of Epidemiology & Population Health, Stanford University School of Medicine, Stanford, CA

Co-Author - Tate Isabella Sgaraglino,
Department of Epidemiology & Population Health, Stanford University School of Medicine, Stanford, CA

Co-Author - Zakaria Nadeem Doueiri, BS,
Department of Epidemiology & Population Health, Stanford University School of Medicine, Stanford, CA

Co-Author - Astrid Nicole Zamora, PhD, MPH,
Department of Epidemiology & Population Health, Stanford University School of Medicine, Stanford, CA

Co-Author - Elaine Captain, MBA,
Magical Bridge Foundation, Palo Alto, CA

Co-Author - Kris Loew, BA,
Magical Bridge Foundation, Palo Alto, CA

Co-Author - Olenka Villarreal, MBA,
Magical Bridge Foundation, Palo Alto, CA

Co-Author - Theresa Vallez-Kelly, MPH,
San Mateo County Office of Education Safe Routes to School, Redwood City, CA

Co-Author - Shelly Crisan, MEd,
Thomas R. Pollicita Middle School, Daly City, CA

Co-Author - Abby C. King, PhD, FSBM,
Stanford University Medical School

Background: Despite needs, Chinese Americans underutilize mental health services (MHS) due to structural barriers and a lack of language-concordant MHS. In 2023, the Pui Tak Center (PTC), a trusted community-based organization with 30 years of experience serving recent immigrants and the faith-based community in the Chicago Chinatown area, launched a community-embedded, reduced-cost MHS program with language-concordant counselors to address these challenges. Through a community-academic partnership, we applied an implementation science framework to explore strategies for improving the MHS referral processes with the ultimate goal of increasing MHS utilization.

Methods: We recruited leaders and staff members (n=11) from several PTC programs, including their Adult English as a Second Language, Immigrant Welcoming Center, Youth, and Disability services. We used in-depth semi-structured interviews to explore perceived barriers to, facilitators of, and opportunities for referring community members to MHS. We analyzed data using an inductive/deductive hybrid thematic analysis approach. Reach and implementation data were collected through internal records. The Exploration, Preparation, Implementation, Sustainment (EPIS) framework was used to organize findings.

Findings: In the first 10 months, PTC received 64 inquiries (including 24 referrals). A total of 28 intake sessions were held with 28 clients; subsequently, 179 counseling sessions were held with those who continued. In interviews, EPIS program/innovation-related facilitators were: counselors’ multilingual capacity (Cantonese, Mandarin, and English) and counselors’ familiarity with clients’ faith and cultural contexts. In the EPIS inner (organizational) context, co-location of MHS within PTC facilitated MHS referral. However, staff’s competing priorities and difficulties in identifying mental health symptoms/those who may benefit from MHS were barriers. In the EPIS outer context, high perceived community needs for MHS was a facilitator, but service use stigma and staffs’ perceived low priority of MHS among clients were barriers. Interview participants discussed several opportunities to improve MHS utilization, including increased outreach in community venues (e.g., churches, schools) and increasing community members’ awareness and acceptance of PTC’s MHS.

Impact: Findings can inform future implementation strategies to bolster MHS use in underserved Chinese and Asian American communities.

Author - Maya Lee,
University of Illinois Chicago

Author - Jane Mann,
Pui Tak Center

Author - Eunice Liao,
Pui Tak Center

Author - David Wu,
Pui Tak Center

Author - Marym Zaheeruddin,
Northwestern University

Author - Katherine Szydlo,
Northwestern University

Author - Anh Doan,
Northwestern University

Author - Loretta Hsueh, PhD,
University of Illinois at Chicago

Author - Kiarri Kershaw, PhD,
Northwestern University Feinberg School of Medicine

Author - Samuel Battalio,
Northwestern University

Author - Madison Hartstein,
Northwestern University

Presenter - Milkie Vu, PhD,
Northwestern University

Background. Early-onset colorectal cancer (EOCRC)— cancer of the colon or rectum occurring in adults under 50 years—has become the leading cause of cancer-related deaths among men and the second leading cause among women under age 50. The reasons for this unexpected rise in CRC among young adults remain unclear, making it a pressing public health issue. Community outreach and education models, particularly integrated multimedia campaigns, are effective in driving health-related behavior change, such as cancer screening. However, these campaigns often miss communities with lower screening rates, highlighting an urgent need for educational efforts addressing EOCRC—a gap that has received little attention. Methods. Our clinical trial, #CRCandMe, assessed the impact of a mass-media campaign on EOCRC awareness among adults aged 18 to 49, conducted in Utah and Wisconsin from June—September 2023. This presentation offers insights into the challenges, lessons learned, and recommendations for organizations and academic institutions interested in using mass-media campaigns for health promotion. Results. First, we partnered with a professional marketing firm, whose expertise and vendor connections were essential. EOCRC survivor input informed campaign development, ensuring relevance and relatability. Second, navigating human subjects protections and external survey platform guidelines posed challenges, highlighting the importance of clear communication and essential contingency plans. Third, culturally responsive messaging and creative implementation strategies were vital, particularly in Utah’s religious communities, as well as rural and geographically isolated areas in both Utah and Wisconsin with limited traditional media access. Lastly, while the campaign generated over 26.7 million impressions and nearly 43,000 clicks, assessing its success required a range of metrics across multiple media platforms. Despite challenges in aligning media performance with conversion goals, any positive impact in target areas was considered a success. Conclusion. Future studies should investigate ways to address the high costs of mass-media campaigns and develop contingency plans to improve research reliability. Our experience underscores the value of interdisciplinary collaboration, survivor engagement, and strategic communication in maximizing public health campaigns.

Co-Author - Ami Sedani, PhD, MPH,
Men's Health Inequities Research Lab

Co-Author - Kelly Rifelj, MPA,
Medical College of Wisconsin

Co-Author - Sharon Carothers,
Sensis Agency

Co-Author - Joenn Kim,
Sensis Agency

Presenter - Charles R. Rogers, PhD, MPH, MS, PhD, MPH, MS,
Men's Health Inequities Research Lab

Background: Spiritual and religious leaders are at high risk of burnout due to high levels of emotional labor, encounters with individuals in crisis, and demanding workloads with limited resources. Occupational burnout negatively impacts physical (e.g. obesity, heart disease) and mental (e.g. anxiety, depression) health. Burnout studies often focus on clinical professionals with faith-based professionals such as pastors understudied. This research explores factors contributing to burnout among Catholic priests.
Methods: We conducted N=18 interviews with Catholic priests of various ranks enrolled in a large randomized trial promoting physical health in Latino-serving, under resourced churches in San Diego County, CA. Trained coders analyzed transcripts using NVIVO software and an iterative deductive approach informed by Maslach’s theoretical burnout framework and supplemented by emergent themes.
Results: Data suggests that priests face significant workloads, balancing job responsibilities with the emotional toll of serving those in need. Large, immigrant parishes amplify this burden. Language barriers, legal issues, and economic hardship among congregants increase emotional strain on priests. Some priests also experience a lack of logistical support (e.g. few staff to help with tasks), social-emotional support (e.g. insufficient access to counseling or peer support groups), and support from senior priests (e.g. limited autonomy among junior priests to implement changes in church operations or priorities). Key factors that could prevent burnout including work environments that involve peer-support networks and support open communication, effective coping mechanisms (e.g. proactive engagement in community advocacy), and intrinsic rewards (e.g. achieving their goals).
Conclusions:
This research reveals complex factors contributing to burnout and identifies potential protective factors among Catholic priests of Latino congregations. Future research should examine determinants of pastoral burnout to inform the development of intervention strategies focusing on 1) the promotion of healthy coping mechanisms, 2) building capacity for effective delegation, and 3) establishing emotional support structures to connect pastors to both peer and professional resources. The findings from this analysis contribute to our understanding of the mental health landscape within religious communities across San Diego County and identify opportunities for support and intervention.

Presenter - Marisa Torres, MPH,
San Diego State University/University of California San Diego

Author - Jennifer Schneider, MPH, MA,
San Diego State University Research Foundation - IBACH

Author - Jackelyne Garcia-Villegas, MA,
San Diego State University/University of California San Diego

Author - Kathryn P. Derose, PhD, MPH ,
University of Massachusetts Amherst

Author - Elva M. Arredondo, PhD, FSBM, PhD, FSBM,
San Diego State University

Introduction
Understanding the social and environmental contexts for behavior is key to developing relevant, multilevel interventions that support the health of Alaska Native families. This study explored contexts impacting foodways among Yup’ik families with young children living in the remote Yukon Kuskokwim Delta (YK) region of Alaska.
Methods
This study was conducted through a community-based participatory research partnership between academic research partners and a nonprofit organization operating Head Start programming in Alaska. The study recruited Alaska Native parents of young children to participate in the Our Voice citizen science method. Parents used the Stanford Discovery Tool mobile app to record photos and narratives in response to a prompt developed by the community advisory board, “What in your life supports / makes it challenging for your family to eat in a good way?” Parents met in groups to review and discuss their data, then identified themes and generated ideas to address barriers and strengthen supports.
Results
Nine Head Start centers in the YK region recruited 24 parents. Participants were an average age of 40 years, and the majority were Yup’ik (92%), female (92%), and followed a traditional Yup’ik way of life (63% a lot; 37% some). Participants collected 174 photos with 107 narratives, and engaged in 11 group meetings. Participants identified themes across individual, community, environmental, and societal levels of influence. Barriers included climate changes and policies that impede food harvesting, cost of food and fuel for transport, and distances to obtain food. Supports were cultural and family practices that promote getting and preparing traditional foods, existing programs (school, tribal, federal), parent strategies for quick meal preparation, and internet/mobile technology. Recommendations included changes to eligibility requirements for federal programs (WIC, SNAP), enhanced school-based resources, and increased opportunities for children to try a variety of traditional foods.
Conclusion
Improved understanding of context can inform development of relevant, multilevel interventions to sustainably improve social and environmental conditions and support long-term behavior change. This study identified themes that impact foodways among Yup’ik families and will contribute to the development and implementation of highly relevant behavioral interventions to promote health among this population.

Author - Maja Pedersen, PhD, PhD,
University of Montana

Co-Author - Diane K. King, PhD, PhD,
University of Alaska Anchorage

Co-Author - Meghan Adair, RDN,
Rural Alaska Community Action Program, Inc. (RurAL CAP)

Co-Author - Abby C. King, PhD, FSBM, PhD, FSBM,
Stanford University Medical School

Co-Author - Andrea Bersamin, PhD, PhD,
University of Alaska Fairbanks