Despite the disproportionate underuse of genetic counseling and testing for BRCA1/2 (BRCA)-associated hereditary breast and ovarian cancer (HBOC) risk among Latinas, little is known about the associated barriers and facilitators. We conducted in-depth qualitative interviews with 20 at-risk Latina women from diverse backgrounds. Eligible women were diagnosed with breast cancer <50 years, with or without a family history of breast and/or ovarian cancer (>1 first-degree relative diagnosed <50 years). All interviews were conducted in Spanish, audio recorded, transcribed, and translated into English. Two bilingual coders used thematic analyses to identify 7 main themes. Results revealed very low levels of awareness and knowledge about HBOC and BRCA genetic counseling. Interestingly, for most Latinas, competing life demands and cultural concerns (fatalismo and destino) did not strongly influence personal beliefs about genetic counseling. In addition, older women were equally as interested in education, cancer prevention, and BRCA genetic counseling as younger women. These findings suggest that Latinas, regardless of age, increasingly acknowledge and prioritize their own health. Women reported their main motivator to undergo counseling was concern about family members' cancer risks. Main barriers included financial and insurance concerns, and lack of awareness about genetic services. Investigating the beliefs and attitudes of diverse populations of Latinas at risk for HBOC reveals logistical barriers to BRCA genetic counseling uptake within this under-represented community. Efforts are needed to provide at-risk Latina breast cancer survivors' knowledge of and access to genetic counseling and testing based on risk status and Latinas' increasing responsiveness and uptake of these services.

Introduction Few studies have evaluated interventions to improve quality of life (QOL) for Latina breast cancer survivors and caregivers. Following best practices in community-based participatory research (CBPR), we established a multi-level partnership among Latina survivors, caregivers, community-based organizations (CBOs), clinicians and researchers to evaluate a survivor-caregiver QOL intervention. Methods A CBO in the mid-Atlantic region, Nueva Vida, developed a patient-caregiver program called Cuidando a mis Cuidadores (Caring for My Caregivers), to improve outcomes important to Latina cancer survivors and their families. Together with an academic partner, Nueva Vida and 3 CBOs established a multi-level team of researchers, clinicians, Latina cancer survivors, and caregivers to conduct a national randomized trial to compare the patient-caregiver program to usual care. Results Incorporating team feedback and programmatic considerations, we adapted the prior patient-caregiver program into an 8-session patient- and caregiver-centered intervention that includes skill-building workshops such as managing stress, communication, self-care, social well-being, and impact of cancer on sexual intimacy. We will measure QOL domains with the Patient-Reported Outcomes Measurement Information System (PROMIS), dyadic communication between the survivor and caregiver, and survivors’ adherence to recommended cancer care. To integrate the intervention within each CBO, we conducted interactive training on the protection of human subjects, qualitative interviewing, and intervention delivery. Conclusion The development and engagement process for our QOL intervention study is innovative because it is both informed by and directly impacts underserved Latina survivors and caregivers. The CBPR-based process demonstrates successful multi-level patient engagement through collaboration among researchers, clinicians, community partners, survivors and caregivers.

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