Community-engaged Approach Research Articles

The Missing Voices, an exploration of what healthcare-related research would matter to Global Ethnic Majority Women in Aberdeenshire, Scotland

Abstract Introduction In multicultural communities, such as the UK, published evidence has indicated that patients from marginalised backgrounds experience healthcare inequality and inequity with regards to accessibility and safety.1 The lack of appropriate ethnic representation in healthcare-related research, has been identified as a potential causation of some of these disparities and poorer health outcomes.2,3 The focus of this project was the marginalised communities identified by the NIHR to have poorer health outcomes, such as Global Ethnic Majority (GEM) women. Aim To explore what healthcare research matters to marginalised communities with a focus on lived and perceived experiences on access to healthcare for GEM women in Aberdeen city and Aberdeenshire, Scotland. Methods This pilot project captured real world data through an inclusive community engagement approach of reaching within rather than reaching out. A framework of 5Cs (Connect, Collaborate, Consult, Co-create and Circulate) was used to establish a diverse panel of ten GEM women. All panel members had a passion for equality and wellbeing as well as diverse lived experiences. The method used to establish the panel is presented elsewhere. Based on a review of literature, open-ended, flexible, thought-provoking questions for the discussions were developed and circulated to all panel members for approval. These questions were used to guide both in-person and virtual open discussions with aforementioned stakeholders to capture narratives and perspectives around barriers and facilitators to equitable healthcare access in the area. As the public members were research partners and not participants, no ethical approval was required as advised by a professor of pharmacy research and the school’s ethics convenor. The project had three main objectives. This submission will only report on objective three that aimed to Identify and prioritise research questions relating to equitable access to healthcare and the needs of marginalised minority ethnic communities. Results The objective was met. A list of emergent themes from the pre-panel questions and a list of panel-approved research questions were devised with a focus on access to healthcare. The emergent themes were around accessibility and equity of maternal/reproductive healthcare, lack of early screening for high-risk GEM groups and culturally appropriate approaches to mental healthcare. Solution focused recommendations included the design of an inclusive healthcare curriculum, compulsory EDI and cultural competency training for healthcare professionals who practice in diverse communities, additional screening programmes tailored to specific GEM groups based on prevalence and risk factors and the development of localised culturally appropriate and inclusive community programmes, especially for those who support new immigrants. Mistrust and lack of inclusive language were mentioned as potential barriers to participating in research. Discussion / Conclusion This pilot offered the historically under-represented and usually silent communities an equal voice within a trusting and collaborative environment. Over ten years after the enaction of the UK Equality Act (2010) inequity in healthcare access and poor outcomes are still evident. The outcomes of this small pilot study highlight that GEM-specific projects should be driven by that community.

A comprehensive epidemiological assessment of female rape in São Paulo State, Brazil: trends, patterns, and implications for public health.

Sexual violence against women remains a global challenge, with Brazil exemplifying persistent issues despite legislative advancements. This study examined sexual violence within São Paulo state, Brazil's largest and economically affluent state, focusing on prevalence, patterns, forensic evidence, and health consequences. We analyzed 40,757 medical reports of alleged cases of rape against women available from the São Paulo Medical Legal Institute from 2014 to 2017. An increase in female rape cases was observed, reflecting broader societal trends, but underreporting, prevalent due to fear and stigma, underscored the need for multifaceted interventions. We also explored correlations between rape prevalence and the Human Development Index, highlighting disparities between urban and rural areas. Additionally, the study revealed concerning proportions of cases involving vulnerable victims, emphasizing the imperative for tailored interventions and legislative reforms. Furthermore, we demonstrated that only a small portion of medicolegal examinations were able to find evidence of sexual violence or recent sexual acts, necessary for conducting the criminal investigation of the alleged act. Therefore, despite challenges in forensic evidence collection, efforts to enhance medical examination protocols and awareness among professionals are crucial. Moreover, findings underscored the significant health consequences of rape, including unwanted pregnancies and sexually transmitted infections, necessitating comprehensive healthcare services for survivors. In conclusion, we reinforced that addressing sexual violence demands coordinated action, including legislative reforms, community engagement, and survivor-centered approaches, to create safer and more resilient communities.

Designing and Implementing a Community-Engaged Research e-Library: A Case Study for Adapting Academic Library Information Infrastructure to Respond to Stakeholder Needs.

The Duke University Clinical and Translational Science Institute Community Engaged Research Initiative (CERI) created an e-Library in 2018. This e-Library was developed in response to requests from academic researchers and the community for reliable, easily accessible information about community-engaged research approaches and concepts. It was vetted by internal and external partners. The e-Library's goal is to compile and organize nationally relevant community-engaged research resources to build bi-directional capacity between diverse community collaborators and the academic research community. Key elements of the e-Library's development included a selection of LibGuides as the platform; iterative community input; adaptation during the COVID-19 pandemic; and modification of this resource as needs grow and change.

Pathways to queer thriving in an LGBTQ+ intergenerational community.

LGBTQ+ people and communities continue to survive and thrive within the context of complex and unrelenting personal, structural, and collective trauma. Psychological research has examined this adaptive capacity through frameworks of resilience and posttraumatic growth. Through multidisciplinary engagement, we have identified limitations of these frameworks when they are applied to LGBTQ+ communities. In the first half of this article, we reconceptualize resilience and posttraumatic growth as queer thriving and offer the Möbius strip as a metaphor to challenge and expand normative ideas around direction, trajectory, timeline, and outcomes of positive change through adversity. In the second half of this article, we explore pathways to queer thriving within an LGBTQ+ intergenerational community project-an ethnographic experiment-that we have cofacilitated since 2019. We view generational divisions in LGBTQ+ communities as both a reflection and a form of trauma. In our ethnographic experiment, LGBTQ+ younger and older adults have the rare opportunity to heal this division by coming together for storytelling, dialogue, and artmaking around themes and issues important to their lives. In this article, we present three ethnographic vignettes that powerfully illustrate the potential for queer thriving through intergenerational social connection. We conclude by emphasizing the importance of mixed-disciplinary, community-engaged, and descriptive approaches to examining resilience and posttraumatic growth within marginalized communities. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Barriers to finding and maintaining pet-inclusive affordable housing: Tenant experiences in Houston, Texas.

The city of Houston, Texas has a growing deficit of available and affordable rental units for low-income residents. Due to pet policies, the shortage of affordable housing potentially puts renters who own pets at greater risk of housing insecurity. In this qualitative study, we use a community-engaged approach to document the lived experiences of finding and maintaining affordable housing among 24 current, former, and aspiring pet owners. The majority of the participants identified as female, were aged 44-60 years, identified as Black, had a high school education, and were employed full-time or on disability or government assistance. Many expressed having experienced homelessness in the past and/or having lived in several different types of affordable housing over their lifetime. Participants highlighted challenges in finding pet-inclusive affordable housing, emphasized its importance, and discussed issues faced, such as high pet charges, size and breed restrictions, and confusion surrounding pet policies. Landlord relationships and living conditions varied, with safety concerns prevalent. Having one's pet designated as an Emotional Support Animal made tenants feel safe and secure, knowing they could not be refused, evicted, or otherwise charged extra. Participants shared what is working well and what could be improved. This study concludes with recommendations for fair application and awareness of pet policies in affordable housing, drawing on participating tenants' experiences and existing efforts for policy and practice improvements.

Community-Engaged Approaches for Improving the Inclusion of Diverse Communities in a Nutrition Clinical Trial.

Cardiometabolic disease (CMD) disproportionately affects African American/Black (AA) and Latino communities. CMD disparities are exacerbated by their underrepresentation in clinical trials for CMD treatments including nutritional interventions. The study aimed to (1) form a precision nutrition community consultant panel (PNCCP) representative of Latino and AA communities in Los Angeles to identify barriers and facilitators to recruitment and retention of diverse communities into nutrition clinical trials and (2) develop culturally informed strategies to improve trial diversity. A deliberative community engagement approach was used to form a PNCCP for the Nutrition for Precision Health (NPH) trial, part of the of the All of Us research initiative. The PNCCP included individuals that provide services for Latino and AA communities who met during 11 virtual sessions over 1 year. Discussion topics included enhancing recruitment and cultural acceptance of the NPH trial. We summarized CCP recommendations by theme using an inductive qualitative approach. The PNCCP included 17 adults (35% AA, 47% Latino). Four thematic recommendations emerged: reducing structural barriers to recruitment, the need for recruitment materials to be culturally tailored and participant-centered, community-engaged trial recruitment, and making nutrition trial procedures inclusive and acceptable. We outlined the study response to feedback, including the constraints that limited implementation of suggestions. This study centers community voices regarding the recruitment and retention of AA and Latino communities into a nutrition clinical trial. It highlights the importance of community engagement early on in protocol development and maintaining flexibility to enhance inclusion of diverse communities in nutrition clinical trials.

Community-Based Health Information Systems in Africa: A Scoping Review of Data Generation, Utilization, and Community Empowerment

Introduction The community-based health information system (CBHIS) is a vital component of the community health system, as it assesses community-level healthcare service delivery and generates data for community health programme planning, monitoring, and evaluation. CBHIS promotes data-driven decision-making, by identifying priority interventions and programs, guiding resource allocation, and contributing to evidence-based policy development. Objective This scoping review aims to comprehensively examine the use of CBHIS in African countries, focusing on data generation, pathways, utilisation of CBHIS data, community accessibility to the data and use of the data to empower communities. Methods We utilised Arksey and O'Malley's scoping review methodology. We searched eight databases: PubMed, EMBASE, HINARI, Cochrane Library, Web of Science, Scopus, Google Scholar, and grey literature databases (Open Grey and OAIster). We synthesised findings using a thematic approach. Results Our review included 55 articles from 27 African countries, primarily in Eastern and Southern Africa, followed by West Africa. Most of the studies were either quantitative (42%) or qualitative (33%). Paper-based systems are primarily used for data collection in most countries, but some have adopted electronic/mobile-based systems or both. The data flow for CBHIS varies by country and the tools used for data collection. CBHIS data informs policies, resource allocation, staffing, community health dialogues, and commodity supplies for community health programmes. Community dialogue is the most common approach for community engagement, empowerment, and sharing of CBHIS data with communities. Community empowerment tends towards health promotion activities and health provider-led approaches. Conclusion CBHIS utilises both paper-based and electronic-based systems to collect and process data. Nevertheless, most countries rely on paper-based systems. Most of the CBHIS investments have focused on digitisation and enhancing data collection, process, and quality. However, there is a need to shift the emphasis towards enabling data utilisation at the community level and community empowerment.

First responder ladder of community engagement: Understanding community-facing activities during the COVID-19 pandemic

ABSTRACT Despite advancements in our understanding of community engagement, questions remain as to how these efforts are applied in practice across specific contexts. First response is one such profession that has received minimal attention in the community engagement literature, even though the work of first responders frequently requires close engagement with communities to maintain safety and promote public health. To address this gap, we analyzed how first responders conceptualized community engagement during the COVID-19 pandemic. Through an analysis of semi-structured interviews collected from U.S. first responders (n = 91), we developed a First Responder Ladder of Community Engagement informed by Arnstein’s Ladder of Citizen Participation. We find that first responder community engagement during the COVID-19 pandemic predominantly focused on information sharing and offered minimal evidence of higher levels of engagement, highlighting the potential disconnect between theories and practice of community engagement. These findings advance our knowledge of the application, variations, and broader framings of community engagement approaches used by first responders, and other fields of practice.

Engaging Indigenous communities in research to inform practice: The multisite implementation evaluation of Tribal home visiting.

Community engagement (CE) is widely acknowledged as a way to enhance the ethics, rigor, and impact of research. Additionally, CE is a demonstrated way to integrate Indigenous and colonial (western) research systems. For these reasons and others, designers of the Multi-site Implementation Evaluation of Tribal Home Visiting (MUSE) used a community-engaged approach to study the implementation of federally funded home-visiting programs across 17 Indigenous communities throughout the United States. This paper describes MUSE's community-engaged approach and its practical applications from the perspective of the MUSE study team. The paper highlights key outcomes attributable to CE, addresses barriers to CE, and details responses to these barriers and their impacts. Adding to the rich evidence base demonstrating the value of community-engaged approaches, MUSE demonstrates that in-depth CE is feasible and valuable in multisite studies done in partnership with Indigenous communities.

Collective Capabilities Complete a Neighbourhood

This article argues for the need for attention to agency as well as structure in planning for complete neighbourhoods and communities, drawing upon collective capabilities theory and driven by a community-engaged research approach. While complete communities planning proposes to provide more fulsome social and physical infrastructure to residents in a context of urban growth and change in Canadian cities, contemporary efforts tend to neglect or disdain the agency and empowerment of residents. This logic and rationale for complete communities planning has shifted compared to the origins of neighbourhood planning in Canada, as will be exemplified here drawing upon the case of Vancouver. The application of the theory of collective capabilities in complete communities planning offers a path forward that is not naïve to the challenges posed by participatory planning and that views organizations other than the government as having collective capabilities to plan. We demonstrate the potential of this through the case of our community-engaged research partnership based at the South Vancouver Neighbourhood House. The project mobilized spatial and statistical research to document the extent of inequities and needs experienced in South Vancouver neighbourhoods as well as the collective capabilities of residents working through the neighbourhood house hub to provide essential services and do effective neighbourhood planning.

Helping Others Facilitates Well-Being for Indigenous Peoples Living With HIV/AIDS in Canada.

Research has found that helping others facilitates well-being for Indigenous peoples living with HIV and AIDS, but limited research exists that investigates the mechanism(s) underlying this relationship. Indigenous perspectives posit that helping others facilitates well-being through the development of an individual's spiritual, physical, emotional, and mental aspects (four aspects). Similarly, self-determination theory posits that helping others facilitates well-being by satisfying basic psychological needs. In the present study, we examined if helping others facilitates well-being through the fulfillment of the spiritual, physical, emotional, and mental aspects among Indigenous peoples living with HIV and AIDS. We used a convergent parallel mixed methods design, coupled with a community-engaged approach grounded in the United Nations Greater Involvement of People Living with HIV and AIDS principles and Indigenous and decolonizing research methodologies. Survey (n = 117) and interview data (n = 9) collected by an Indigenous-led HIV/AIDS organization in Canada were employed to examine the relationship between helping, the four aspects, and well-being. Participants were primarily First Nations leaders and mentors who live with HIV/AIDS, with some Métis and Inuit. A parallel multiple mediation model and reflexive thematic analysis were used to analyze the relationship between helping, the four aspects, and well-being. Mixed-methods findings support the idea that helping others promotes well-being by fulfilling the emotional and mental aspects. Qualitative findings demonstrated this relationship for all four aspects. This research may facilitate the development of programs to support Indigenous peoples living with HIV/AIDS well-being and contribute to the literature on integrating Indigenous perspectives and methodologies within psychological research.

The use of community-engagement approaches to identify strategies for increasing workplace well-being among LGBTQ+ adults

BackgroundLGBTQ+ individuals often face social stigma and workplace discrimination, negatively impacting their well-being. However, limited research exists on the factors and strategies that enhance their positive workplace experiences. This study was a sequential qualitative mixed-method design conducted in three phases. The study had the following objectives: identifying factors associated with workplace well-being, generating strategies for improving workplace well-being, and obtaining feedback on the identified strategies' acceptability. MethodsIn Phase 1, in-depth interviews were conducted with 10 LGBTQ+ who described factors that improved their satisfaction at work. In Phase 2, two focus group discussions were held with 13 participants, including LGBTQ+ adults, scholars in positive psychology, human resource development, and civil rights advocates, to develop strategies for improving workplace well-being based on Phase 1 data. In Phase 3, a survey was sent to a subset of the focus group participants (N = 7) to ascertain the acceptability of the developed strategies. Data analysis was performed using deductive and inductive approaches. ResultsThe study's first phase identified the factors contributing to workplace well-being. These factors were categorized into intrapersonal, interpersonal, and social-ecological. In the second phase and third phase, 11 strategies were developed to improve workplace well-being. These strategies were divided into two sections. The first section includes strategies organizations and agencies can implement to promote employee well-being (such as emphasizing diversity and equity as core values). The second section outlines strategies for government and civil society sectors (such as establishing laws addressing LGBTQ+ equal rights). The Index of Congruence (IOC) assessed the relationship between strategies and workplace well-being improvement. Results showed IOC values from 0.8 to 1 for 11 strategies, indicating high content validity. ConclusionsStrategies to enhance LGBTQ+ workplace well-being were identified through community engagement, but further research is needed for implementation and evaluation.

Factors influencing community engagement approaches used in Aedes aegypti management in Cairns, Australia.

An important part of preventing and managing Aedes-borne mosquito disease outbreak risk is engaging the community. Research shows that high-income countries tend to use top-down measures for Aedes mosquito management, favouring educational approaches to engage the community over participatory approaches that actively involve and empower the community in addressing disease risk. Little is known about the reasons behind the use of these approaches and how they could be strengthened. This research explores the community engagement approaches used in Aedes mosquito management in Cairns, Queensland, Australia and the factors influencing the choice of these approaches. A case study design was used, drawing on two qualitative methods-key informant, semi-structured interviews (n = 25), and a document review (n = 20). Thematic analysis was used to identify, analyse and attribute meaning from the data. Various approaches were used to engage the community, including direct interaction through door-to-door inspections, broad outreach via mass media campaigns, and community participation in a novel mosquito replacement strategy. Factors influencing the choice of these approaches included government legislative responsibilities, research-related ethical obligations, work norms within local government and public health units, the perceived importance of gaining community trust, constraints on workforce capacity, time and funding. There were multiple factors influencing the community engagement approaches used in this study. Resource constraints, institutional norms and prevailing attitudes and beliefs were identified as hindering the use of more empowering approaches to engaging the community. These barriers should be considered and addressed in the planning of Aedes mosquito management to better support community engagement in this setting. SO WHAT?: Community engagement is an important aspect of managing the Aedes mosquito disease threat. With the global increase in Aedes mosquito-borne disease risk, these findings can help other at-risk settings understand potential organisational impediments to engaging the community. This is particularly important when advocating for the inclusion of bottom-up approaches in policy, and to ensure sufficient resources are allocated to strengthen community engagement in Aedes mosquito management.

Examining the development and utilisation of Community-Based Health Information Systems (CBHIS) in Africa: A Scoping Review

Introduction The community-based health information system (CBHIS) is a vital component of the community health system, as it assesses community-level healthcare service delivery and generates data for community health programme planning, monitoring, and evaluation. CBHIS promotes data-driven decision-making, by identifying priority interventions and programs, guiding resource allocation, and contributing to evidence-based policy development. Objective This scoping review aims to comprehensively examine the use of CBHIS in African countries, focusing on data generation, pathways, utilization of CBHIS data, community accessibility to the data and use of the data to empower communities. Methods We utilised Arksey and O'Malley's scoping review methodology. We searched eight databases: PubMed, EMBASE, HINARI, Cochrane Library, Web of Science, Scopus, Google Scholar, and grey literature databases (Open Grey and OAIster). We synthesized findings using a thematic approach. Results Our review included 55 articles from 27 African countries, primarily in Eastern and Southern Africa, followed by West Africa. Most of the studies were either quantitative (42%) or qualitative (33%). Paper-based systems are primarily used for data collection in most countries, but some have adopted electronic/mobile-based systems or both. The data flow for CBHIS varies by country and the tools used for data collection. CBHIS data informs policies, resource allocation, staffing, community health dialogues, and commodity supplies for community health programmes. Community dialogue is the most common approach for community engagement, empowerment, and sharing of CBHIS data with communities. Community empowerment tends towards health promotion activities and health provider-led approaches. Conclusion CBHIS utilizes both paper-based and electronic-based systems to collect and process data. Nevertheless, most countries rely on paper-based systems. Most of the CBHIS investments have focused on its digitization and enhancing data collection, process, and quality. However, there is a need to shift the emphasis towards enabling data utilisation at the community level and community empowerment.

The Test and Protect Program: A Data-Driven, Community-Engaged Approach to COVID-19 Testing Site Localization.

As the COVID-19 pandemic progressed, reliable, accessible, and equitable community-based testing strategies were sought that did not flood already overburdened hospitals and emergency departments. In Hamilton County, Ohio, home to~800 000 people across urban, suburban, and rural areas, we sought to develop and optimize an accessible, equitable county-wide COVID-19 testing program. Using Coronavirus Aid, Relief, and Economic Security Act funding, multidisciplinary, multiorganization partners created the test and protect program to deliver safe, reliable testing in neighborhoods and organizations needing it most. Our approach involved: (1) use of geospatial analytics to identify testing locations positioned to optimize access; (2) community engagement to ensure sites were in trusted places; and (3) tracking of data over time to facilitate ongoing improvement. Between August 2020 and December 2021, more than 65 000 tests were completed for nearly 46 000 individuals at community-based testing sites. These methods could have application beyond COVID-19 and our region.

Abstract B024: Be your own fan: Who do you get screened for?: A culturally sensitive and community-vetted colorectal cancer awareness campaign tailored for the Filipino community in Los Angeles County

Abstract Background Colorectal cancer is the second most common cancer among Filipina women and third among Filipino men, especially in Los Angeles County with the second largest concentration of Filipinos and immigrants. Recent trends show that Filipino experience late-stage diagnosis and lower survival rates. Despite the large number of Filipinos working in healthcare industry dedicated to caring for others, many Filipinos neglect to prioritize their own health and well-being. In collaboration with the Art Center College of Design, Cedars Sinai Cancer Center Community Outreach and Engagement (COE) developed a colorectal cancer awareness campaign, "Be Your Own Fan: Who do you get screened for?" aiming to evoke emotion and prompt reflection on the importance of health through storytelling, imagery, and tailored health materials (i.e., traditional hand fan, infographics, t-shirts, tote bags, stickers, photocards). Methods To determine relevance of the health campaign, five 1 hour semi-structured focus groups were conducted both in English or Tagalog via Zoom with n=23 adults ages 18 and over who self-identify as Filipino to provide community input on appropriateness of the messaging, colors, symbols, and community engagement approach. Participants were recruited through snowball sampling at in-person community outreach events, and email distribution. Results Participants represented diverse professions such as nursing, home healthcare/caregiving, public health, and accounting. Majority were 69% middle-aged adults, 57% female, and 4% colorectal cancer survivor. Research findings show that Filipinos take pride in their traditional culture, particularly in the use of Philippine flag colors (red, blue, yellow, and white) in health materials as opposed to other hues or tints. Either English or conversational Tagalog were preferred languages since it may be challenging to represent over 100 different languages spoken by Filipinos. Lastly, featuring stories and images of trusted community figures like healthcare professionals, church and community leaders, and family members are effective in pulling the heartstrings of the Filipinos to empower them to be their own fan/advocate. With this feedback, the campaign has been revised and deployed in the community and preliminary findings with n=77 people reached indicate increased awareness on colorectal cancer and intent to get screened. Conclusion. Developing health campaigns that closely reflect the community they serve can lead to increased awareness, participation, and adherence to health recommendations and behaviors. Citation Format: Reener Balingit, Mark Bondoc, Dong Hee Kim1, Zul Surani. Be your own fan: Who do you get screened for?: A culturally sensitive and community-vetted colorectal cancer awareness campaign tailored for the Filipino community in Los Angeles County [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B024.

Abstract A148: Perceptions of lung cancer screening among Native American patients: The Tribally Engaged Approaches to Lung Screening (TEALS) study

Abstract Introduction: Uptake of lung cancer screening (LCS) with low dose computed tomography is poor nationwide. The U.S. Native American (NA) population has a high prevalence of smoking and lung cancer mortality but low rates of LCS completion. Awareness and perceptions of LCS among NA men and women have rarely been studied. Methods: Using a community-engaged research approach in partnership with the Choctaw Nation Health Services Authority in Oklahoma, the “Tribally Engaged Approaches to Lung Screening” study developed and implemented a cluster-randomized controlled trial of a coordinated LCS program. In 2022, NA men and women eligible for LCS from six tribal health clinics completed a baseline survey prior to being referred for LCS. Surveys included demographic characteristics, smoking history, use of cancer preventive services, beliefs regarding personal risk of lung cancer, and perceptions toward LCS. Findings: Among 210 participants (57% women, 43% men), mean age was 63 years; 50% reported annual household income below $25,000, 83% completed high school or equivalent, with 40% having some college education. The median pack years of smoking was 46 years. The proportion of participants who currently smoke was 72%. Current cigarette users were slightly younger than former users (median age 61 vs 64 years, respectively) and similarly had lower maximum estimates of pack-years of use (median, 44 vs 52). Most (93%) had more than one primary care visit within the past 12 months, and 76% completed an annual physical or wellness visit in the past year. Overall, 73% had completed colonoscopy and, among women, 80% had a mammogram. Only 62% had heard about LCS. However, 74% agreed with the statement “It is likely that I will get lung cancer sometime in my lifetime”. More than 90% of participants agreed that LCS would help with each of the following: early detection, chances of dying from lung cancer, reduce personal worry about lung cancer, reduce their family’s worries, improve planning for the future and peace of mind. However, 44% worried that LCS would find “something wrong”, 15% endorsed that they would rather not know if they had any lung problems, and 10% were afraid the scan would damage their lungs. About 20% worried about being a social outcast or being blamed for having smoked. Regarding potential barriers, 32% felt that cost would be a problem, 28% felt they did not have the time, and 17% that transportation would be a problem. Overall,14% reported bad experiences with healthcare or a provider, and 8% did not trust the healthcare system. Regarding LCS, 28% felt they did not know enough about the test, 11% felt they were too old to benefit from LCS, and 8% felt LCS was not worth the effort. Conclusions: Perceptions of the potential benefits from LCS were overall favorable in this sample of NA adults. However, up to 30% perceived significant barriers to LCS uptake. Greater awareness of LCS and mitigation of barriers to LCS would help to reduce the marked disparities in lung cancer mortality among NA patients. Citation Format: Dorothy A. Rhoades, Cara Vaught, Ann Chou, Kathleen Dwyer, Mark P Doescher, Michele Gibson, Zsolt Nagykaldi. Perceptions of lung cancer screening among Native American patients: The Tribally Engaged Approaches to Lung Screening (TEALS) study [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr A148.

Abstract B120: Understanding Barriers and Facilitators Affecting Participation in Cancer Clinical Research Studies for Racially and Ethnically Diverse Populations in Rural North Carolina

Abstract Increasing representation of minoritized racial and ethnic populations in cancer clinical research studies has been declared a priority in the US for many years. Additionally, it is widely recognized that people living in rural areas of the US have limited access to cancer clinical research studies, and solutions are needed to extend participation opportunities to rural cancer patients. Underrepresentation of minoritized racial and ethnic populations and rural communities perpetuates health inequities, and solutions are needed to remove barriers and implement facilitators for participation. However, a review of existing literature found a lack of attention on the intersection of race and rurality and the needs and values of these populations as it pertains to cancer research. To address this concern, we used a sequential mixed method, community-engaged approach to explore the barriers and facilitators affecting participation in cancer clinical research from the perspectives of cancer survivors and their caregivers, as well as cancer healthcare professionals in rural North Carolina (NC). We used existing publicly available data to identify and characterize four of the most rural, racially and ethnically diverse, and medically underserved counties in NC. The principal investigator collaborated with cancer centers, churches, and American Indian tribal leaders in NC to administer surveys to cancer survivors and caregivers to assess their beliefs and experiences regarding cancer clinical research. Eligible participants included persons who had been diagnosed with cancer or a caregiver of someone diagnosed with cancer. In addition, we conducted key informant interviews with cancer health care professionals providing cancer care in the selected rural NC counties. We analyzed surveys and interview responses with descriptive statistics. Forty-three cancer survivors/caregivers completed surveys and twenty-two cancer healthcare professionals completed semi-structured interviews. Cancer survivors and caregivers indicated that the lack of invitation to participate in cancer clinical research was their greatest barrier to participation, whereas cancer healthcare professionals cited the lack of transportation as the perceived greatest barrier for patients. Cancer survivors, caregivers and healthcare professionals agreed that having support from clinical research personnel would be amongst the most helpful facilitators, along with opportunities to participate in clinical research studies close to home. Cancer healthcare professionals suggested the lack of trust in clinical research was a barrier for their patients; however, cancer survivors and caregivers in this study indicated lack of trust was not a significant barrier to their participation. Recommendations to address barriers and promote facilitators to participation in cancer clinical research include the importance of engaging the community, addressing unconscious bias, decentralizing clinical trials, and providing recruitment materials in culturally responsive formats. Citation Format: Amy Garrett, Karine Dubé, Lisa Spees, Ronny Bell, Marjory Charlot, Sandra Greene. Understanding Barriers and Facilitators Affecting Participation in Cancer Clinical Research Studies for Racially and Ethnically Diverse Populations in Rural North Carolina [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B120.

Designing a Culturally Relevant Digital Skin Cancer Prevention Intervention for Hispanic Individuals: Qualitative Exploration.

In the past 2 decades, melanoma incidence among Hispanic individuals has risen by 20%. The mortality rate of Hispanic individuals is higher than that for non-Hispanic White individuals. Skin cancer can largely be prevented with regular sun protection, and skin cancer outcomes can be improved through early detection, for example, by skin self-examination. Alarmingly, Hispanic individuals are less aware of the symptoms and harms of skin cancers, tend to have misperceptions regarding the risks and benefits of skin cancer prevention behaviors, and engage in less sun protection behaviors than non-Hispanic White individuals. This study aimed to use a community-engaged approach and conduct both group and individual interviews among Hispanic individuals and relevant key stakeholders to explore the potential design of a mobile-based skin cancer prevention intervention for Hispanic individuals. This study used a qualitative design (focus groups and individual interviews). Participants were recruited from local community organizations' social media, local events, and contact lists (eg, email). Zoom interviews were conducted to examine whether Hispanic individuals would be interested in a mobile-based skin cancer intervention and to explore their preferences and suggestions to inform skin cancer prevention intervention design. Five focus groups (2 in Spanish and 3 in English) among self-identified Hispanic individuals (n=34) and 15 semistructured, in-depth individual interviews among key stakeholders (health care providers and community leaders; eg, dermatologist, nurse practitioner, licensed social worker, and church leader) were conducted. The main themes and subthemes emerging from the group discussions and individual interviews were organized into the following categories: intervention platform, delivery frequency and format, message design, engagement plan, and activities. WhatsApp and Facebook were identified as suitable platforms for the intervention. Messages including short videos, visuals (eg, images and photographs), and simple texts messages were preferred. Recommendations for message design included personalized messages, personal stories and narratives, culturally relevant design (eg, incorporating family values), and community-trusted sources. Potential engagement and retention recommendations were also discussed. Additional details and exemplar quotes of each theme and subtheme are described. This study provides important insights and directions for the design of a mobile, digital skin cancer intervention to modify Hispanic individuals' sun protection and skin self-examination behaviors to help improve skin cancer outcomes. Insights gathered from community leaders and health care providers provided valuable additions to the community-derived data. Leveraging popular digital platforms among Hispanic individuals such as WhatsApp or Facebook could be a promising approach to skin cancer prevention. Recommendations from the community included the use of concise videos, illustrative images, clear text messages, tailored communications, narratives featuring personal experiences, designs that reflect cultural significance, and information from sources that are trusted by the community, which provided useful strategies for future intervention design among Hispanic individuals.

Integrating social sciences in community engagement in humanitarian action: benefits and challenges seen from the field

The application of social sciences has been recognized as valuable to inclusive humanitarian programming that aims to be attentive to the needs and initiatives of affected communities. However, the integration of social science-informed community engagement (CE) approaches in humanitarian action remains episodic, fragmented, and under-resourced. This research article provides insights from a study that reviewed existing and needed capacities for the systematic integration of social sciences for community engagement in humanitarian action. We examined what capacity resources exist and what resources need to be developed for strengthening social science integration into humanitarian programming for improved engagement of affected and at-risk communities in conflict and hazard contexts. A mixed method approach was used, including twenty-two key informant interviews and a focus group discussion with social scientists and humanitarian practitioners, an online survey with 42 respondents, a literature review, and a year-long monthly consultation with social scientists and humanitarian practitioners in a UNICEF-led global technical working group. Results illustrate insights on the value of the “social science lens” in humanitarian action and current usage of different social science disciplines. Challenges found include different understandings (e.g., on standardization), languages and methods used by practitioners and social scientists, and how to integrate the seemingly “slow” processes of social sciences to fit emergency response. Institutional barriers to mainstream community-centered humanitarian action facilitated by the social sciences include top-down decision-making and resourcing, lack of localization, and many siloed, dispersed, and episodic efforts.