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The COVID-19 pandemic disrupted breast cancer care, exacerbating disparities among racial and ethnic minority groups. This qualitative study explores the experiences of African American and Latina breast cancer survivors in the Washington, DC, metro area. We conducted semi-structured interviews to examine their experiences during the pandemic and the impact of the pandemic in their wellbeing. We used consensual qualitative analysis to analyze the interviews. Participants (N = 40) had an average age of 52.23 (SD = 10.15). We identified significant barriers to care, including appointment delays, financial struggles, limited telehealth access, and increased mental health burdens. Many survivors reported heightened stress due to fear of infection, social isolation, and treatment disruptions. Despite these hardships, participants found support through strong community networks, increased spirituality, and adaptive coping strategies. Findings highlight the need for tailored interventions. The insights from our paper help inform policies aimed at improving health equity for minoritized cancer survivors.
An important step toward understanding the role of BRCA and other cancer genes in Latinas is to increase the number of individuals who receive genetic testing and counseling (GTC). Latinas have the 2nd highest prevalence of BRCA gene mutations after women of Ashkenazi Jewish ancestry and the lowest level of awareness about GTC for inherited cancer risk than all other racial/ethnic groups, and are 4-5 times less likely to get tested compared to Whites. Recognizing a lack of knowledge among Latina breast cancer survivors (BCS) and their daughters, Nueva Vida, developed an intergenerational intervention as an effective method to leverage cultural values and combat mistrust, laying the groundwork for learning and preventive action. The aim of De Madres a Hijas is to increase Latina mothers/daughters’ knowledge about Hereditary Breast Cancer (HBC) risk, enhance their talking about familial HBC risk with relatives, and develop an “action plan” to make educated decisions on their own health. We used an explanatory pre-post mixed methods design to assess how the intervention contributes to an increase in Latina mothers/daughters’ knowledge about HBC risk and promotes intent to participate in genetic counseling and testing. We used descriptive statistics to characterize the study sample of Latina BCS and their daughters (n = 48). Participants were administered a 13-item pre-post survey to assess knowledge (i.e., having a genetic mutation does not mean you will get cancer T/F). An expanded Consolidated Framework for Implementation Research (CFIR) comprised of 15 domains (e.g., Difficulty Understanding Genetics, Actions to Learn about Family History) guided the qualitative data analysis. Four Coders utilized template analysis to analyze the interviews. This first-of-its-kind, community-based initiative leverages a one-day, workshop to educate BCS and their daughters about HBC, their risks, preventive behaviors and GTC. These workshops show 91% of daughters improved understanding of genetic cancer, and 83% reported behavior changes toward healthier daily activities and prevention-focused habits. As stated by a participant, “We were told to be aware if we feel pain… I did my self-exam and I didn’t find anything, but I felt pain right next to my armpit and I felt more confident to make a follow up appointment and they found it (a lump).” Lastly, to extend the reach of the program, we have developed the Toolkit—a manual for other Latino-serving organizations hoping to facilitate these life-saving conversations in their communities. Culturally tailored interventions are vital for ensuring that GTC services are accessible, effective, and equitable for all individuals, regardless of their ethnicity. Education plays a pivotal role in closing the gaps in GTC. Creating the opportunity for mothers and daughters to share this experience, provides not only knowledge building about GTC, but also a special bonding by listening and understanding each other’s lived experience. Second generation Latinas show better literacy levels than immigrant Latinas who deal even with their own language reading and writing barriers. For the Latina community, it’s crucial that we not only offer HBC education but do so in a way that resonates with their unique cultural perspectives. L. A. Logie, A. Serrano, C. Campos Galván, A. Hurtado de Mendoza, M. De Jesus, A. Jimenez. De Madres a Hijas: A Culturally Tailored Intervention to Increase Knowledge on Hereditary Breast Cancer Risk among Latina Mothers & Their Daughters [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2025; 2025 Dec 9-12; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2026;32(4 Suppl):Abstract nr PS3-02-22.
National guidelines recommend genetic counseling and testing (GCT) referral for women at increased risk for Hereditary Breast and Ovarian Cancer (HBOC). Although awareness of genetic risk can guide prevention and treatment, Latinas show low awareness and GCT uptake. Despite the expanded access offered by telephone genetic counseling, testing rates remain lower than with in-person counseling, particularly among minoritized groups. Little is known about barriers to completing at-home saliva testing and accessing risk-management follow-up care for those who test positive. This study extends the CONTIGO study (Phase 1), which aimed to increase awareness of HBOC risk and uptake of GCT among Latina women. In Phase 2, we explored barriers and facilitators to completing genetic testing and risk management follow-up care among Latina women who previously received telephone genetic counseling. From those eligible, every third participant was selected for screening and invited to participate. This study involved a semi-structured interview to explore barriers and facilitators to GCT and follow-up care and the completion of a 5-point Likert scale to assess satisfaction with their decision to pursue testing. Data were analyzed using Rapid Qualitative Analysis. Among 21 participants, 11 (52%) completed genetic testing. All participants were of Latin American origin, with an average age of 41 (SD=8.57); 81% were uninsured. Those who underwent genetic testing reported high satisfaction with their decision (M=5, SD=0; scale 1-5), while those who did not undergo testing reported lower satisfaction and more barriers to testing (M=2.4; SD=1.13). Barriers to testing included concerns about life insurance eligibility, health insurance, administrative burdens (e.g., forms, insurance, mailing), family discouragement, and competing priorities. Facilitators included access to clear and culturally relevant information, a desire to protect family members, knowledge of family cancer history, and motivation to prevent cancer. Among those who completed testing (n=11), five (45%) received a positive result and follow-up recommendations (e.g., increased screenings, preventive surgery). Similar barriers emerged in accessing follow-up care, including language barriers, difficulty understanding the implications of test results, and high treatment costs. However, participants expressed satisfaction with the support of community-based organizations (CBOs) in their care navigation. This study highlights the need to address the barriers that Latina women at risk for HBOC face in accessing GCT and follow-up care. Findings underscore the importance of culturally tailored support and interventions that reduce obstacles to care. Future research should examine the development, implementation, and scalability of culturally tailored interventions such as peer navigation, digital tools, and workshops, along with toolkits co-developed with community-based organizations (CBOs), to support informed decision-making and enhance the uptake of GCT and risk management follow-up in this population. Valeria Gómez, Dariana Sedeño-Delgado, Clara B. Barajas, Karina Knizek, Daniela Grados-Rojas, Kristi Graves, Marc Schwartz, Beth Peshkin, Chiranjeev Dash, Vanessa Sheppard, Paula Cupertino, Pilar Carrera, Geoffrey Curran, Brenda Roig, Nathaly Garces Lenis, Mary Mills, Nancy Valencia-Rojas, Gina Hernandez, Kennya Alvarado, Andrea Bedregal, Abraham Aragones, Alejandra Hurtado de Mendoza. Understanding gaps in genetic testing uptake and risk management follow-up care in Latina women at risk for HBOC [abstract]. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr B076.
Breast cancer is the most commonly diagnosed cancer and the leading cause of cancer death among Latina women. National guidelines recommend genetic counseling and testing (GCT) for patients at-risk of hereditary breast and ovarian cancers (HBOC). Compared to non-Hispanic Whites, Latinas are less likely to receive GCT because of systemic (e.g., healthcare bias) and patient-level barriers (e.g., lack of insurance). Community based organizations (CBOs) play a key role in providing essential healthcare services to underserved communities, including Latina women. CBOs can serve as a bridge to connect underserved Latinas to genetic services. There is a need to develop interventions to streamline awareness, education, and resources for CBOs to refer Latinas at-risk of HBOC to GCT or risk-management care. The purpose of this study was to co-develop a CBO toolkit to implement identification and referral of Latinas at risk of HBOC to GCT and risk-management care in partnership with multiple stakeholders. We conducted a focus group with multiple key stakeholders (N=8), which included patient navigators at partnering CBOs, clinicians, and representatives from local health departments and patient advocacy groups. During the focus group we asked for participants’ about perceived barriers/facilitators for Latinas to access GCT and risk-management care, resources, and suggestions for the CBO toolkit. There were 3 main themes identified: barriers/facilitators to GCT completion, CBO toolkit suggestions, and policy implications. For the toolkit development, results greatly favored the toolkit being in a website format to facilitate accessibility, bilingual in English and Spanish, with extensive resources and educational materials on HBOC and GCT. Visual, and easy to use format with downloadable content was preferred. The development of a CBO toolkit to facilitate navigation of at-risk Latinas to GCT services and risk management follow-up care is an important step to reduce healthcare barriers. Sara Idris, Dariana Sedeño-Delgado, Valeria Gómez, Ruth Noll, Rachel Loia, Sophia Samson, Kristi Graves, Marc Schwartz, Beth Peshkin, Chiranjeev Dash, Vanessa Sheppard, Paula Cupertino, Pilar Carrera, Geoffrey Curran, Brenda Roig, Nathaly Garces Lenis, Mary Mills, Nancy Valencia-Rojas, Gina Hernandez, Kennya Alvarado, Andrea Bedregal, Lisa Schlager, Diane Rose, Abraham Aragones, Alejandra Hurtado de Mendoza. Developing a toolkit for CBOs to enhance education and navigation of Latinas at risk of HBOC to genetic services and risk management care [abstract]. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr B078.
Genetic counseling and testing (GCT) inform cancer management for persons at risk for hereditary breast and ovarian cancer (HBOC). Community-based organizations (CBOs) may play a role in identifying at-risk Latinx individuals to connect them to GCT but data are lacking. Two academic centers and their four CBO partners planned to implement a validated questionnaire for HBOC risk screening ("HBOC risk screening tool"). This study aimed to assess CBO's preferences for HBOC risk screening tools, as well as the barriers and facilitators anticipated for future implementation. Pre-implementation focus groups were conducted with CBO's staff. Discussions centered on current practices to identify and refer at-risk patients. During the discussion, staff were asked to select one out of five validated HBOC risk screening tools to implement and to discuss anticipated barriers/facilitators for implementation. The four focus groups were coded and qualitative analyzed following the Consolidated Framework for Implementation Research (CFIR) and Health Equity domains. All CBOs chose the Family History Screen 7 (FHS-7). Participants (N = 35) highlighted how the FHS-7 was easy to adapt to better fit the target population and changing guidelines. They had positive attitudes toward implementing the screening tool, stressed how the culture of the organization positioned them to reach the target population, and noted barriers in different CFIR domains (e.g., low knowledge about HBOC and GCT referrals; scarce available resources). Participants pointed to barriers related to health equity domains including limited access to GCT and follow-up care for uninsured and underinsured populations, challenges obtaining accurate family history, and immigration-related barriers. CBOs highlighted the importance of partnering with other stakeholders to overcome barriers. Findings emphasize the need to develop multi-level implementation strategies to overcome barriers and leverage facilitators. This study can inform the development of implementation toolkits for CBOs to implement HBOC screening tools to advance health equity.
