Phillips, Daphne

Background: Sharing of family cancer history (FCH) in Black families has been documented as lower than in other populations. There has been limited exploration as to the factors and circumstances that facilitate or hinder FCH communication in these communities. Objective: To explore intersecting factors influencing FCH discussion in Black families with a breast or ovarian cancer diagnosis. Interventions/Methods: We conducted qualitative interviews with socioeconomically diverse breast and ovarian cancer patients or family members. Interviews were thematically analyzed for iterative themes on FCH. Results: A total of 107 participants completed an interview. Discussion of FCH was reported as being influenced by several factors, including relationship and family dynamics, personality of family members, involvement in caregiving and support, and perceived importance and responsibility of communicating FCH for cancer prevention. Participants also described how inequitable access to medical care influenced disclosure of a cancer diagnosis, and socioeconomic concerns can influence family communication and documentation of FCH in the medical record. Conclusion: Our analysis indicates that disclosure of FCH is improving over time as access to healthcare has increased for Black families. Implications for Oncology Nursing Practice: Strategies to collect FCH outside of clinic settings, such as digital tools or chatbots, should be considered for increased capture of cancer pedigrees in families where discussion is limited. Patient education on options for preventative care and communications tools may assist patients with family discussions, although patients with adverse social determinants of health are likely to experience additional barriers to genetic screening based on FCH alone.

ABSTRACTBackgroundPsychological safety is critical to early and continued engagement with healthcare providers, yet no studies have explored this concept in relationship to cancer care. Black/African American (“Black”) individuals experience disparities in breast and ovarian cancer beyond what can be explained biologically.AimsWe explored factors influencing psychological safety among Black breast and ovarian cancer patients and their family members.MethodsSocioeconomically diverse patients with a personal diagnosis or family history of breast and/or ovarian cancer were invited to complete a semi‐structured qualitative interview on their cancer and healthcare experiences between September 2020 and April 2021. Informed by principles of grounded theory, interview transcripts were qualitatively analyzed for thematic content related to psychological safety.ResultsBlack breast and ovarian cancer patients and their family members described personal and community experiences and structural components of the healthcare system that suggested they may receive differential cancer care due to their race, placing them on guard. This posture was mediated by several self‐identified factors that added to or detracted from their comfort, including provider racial and gender concordance in healthcare, personalized care, and effective communication. The priorities and perceptions of care in participants receiving care in safety net clinics were more focused on what was feasible given resource limitations rather than what was ideally desired.ConclusionsImplementation of strategies to promote psychological safety with Black cancer patients may foster improved patient experiences, as well as encourage early screening, patient engagement, and treatment continuation.

Abstract Black women experience significant disparities in morbidity and mortality related to hereditary breast and ovarian cancer (HBOC). Early identification of women with HBOC is essential for proactive screening and timely diagnosis. However, evidence suggests that Black women receive genetic testing for HBOC at lower rates than their White counterparts. We conducted in-depth qualitative interviews with 107 Black women with a personal or family history of breast or ovarian cancer, to understand their perceptions of their familial risk of HBOC and interest in genetic testing. In phase 1 of this study, participants were recruited from the networks of patient support organizations and historically Black sororities representing mostly highly educated and well insured patients. In phase 2, participants were recruited from a family medicine safety net clinic in Jacksonville, FL for socioeconomic diversity. Participants in both cohorts frequently expressed a lack of awareness about their family cancer history and identified many barriers to family disclosure of a cancer diagnosis. These include a culture of silence around medical issues and a belief that personal difficulties should be kept to oneself. Practical and cultural barriers to family history sharing were magnified among those with lower socioeconomic status. Many participants in both cohorts indicated a strong desire to understand their own risk of HBOC. They also expressed interested in genetic testing to proactively mitigate risk to themselves and future generations. Understanding of the potential relevance of HBOC testing to one’s personal health and post-test actionability was variable across both groups, although perceptions of genetic testing were generally favorable. These findings suggest that culturally tailored educational materials and alternative clinical modalities to collect family health history may be beneficial to improve timely identification of Black women who meet NCCN Guidelines for HBOC testing. Specifically, greater attention should be given to addressing barriers that led to underestimation of HBOC risk among patients experiencing disparities driven by adverse social determinants of health. Citation Format: Kirsten Riggan, Jane Yap, Ewan Cobran, Michele Halyard, Sarah James, Marion Kelly, Daphne Phillips, Megan Allyse. Perceptions and Experiences of Black Women on Family History Sharing and Genetic Testing for Hereditary Breast and Ovarian Cancer [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-09-08.

Abstract Black women experience significant disparities in morbidity and mortality related to hereditary breast and ovarian cancer (HBOC). Early identification of women with HBOC is essential for proactive screening and timely diagnosis but evidence suggests that Black women receive genetic testing for HBOC at lower rates than their White counterparts. To understand Black women’s perspectives on HBOC genetic testing and potential factors influencing this decision, we conducted in-depth qualitative interviews with 107 Black women with a personal or family history of breast or ovarian cancer. Participants were recruited via the networks of patient support organizations and sororities as well as at a family medicine safety net clinic in Jacksonville, FL. Participants frequently expressed a lack of awareness about their family cancer history; many cancer patients stated that they only became aware of extensive family history upon their own diagnosis. Lack of family history sharing was attributed to a culture of silence around medical issues and a desire to protect family members from difficult information. However, most participants indicated a strong desire to understand their own risk of HBOC and were interested in genetic testing. Participants with a personal diagnosis were motivated to undergo HBOC genetic testing to reduce the risk for future generations. Clinical experiences with the offer of HBOC genetic testing were variable, with a few expressing that they had to make repeated inquiries from a provider to understand the relevance of the test to their own health. These findings suggest that investigation into alternative clinical modalities to collect family health history may be beneficial to identify Black women who meet NCCN Guidelines for HBOC testing. In contrast to the literature suggesting hesitancy for HBOC genetic testing, many participants perceived genetic results as having a positive impact for their medical decision-making and family's health. The development of patient materials and provider education on cultural and social factors that influence the uptake of HBOC genetic testing is also needed. Citation Format: Kirsten A. Riggan, Michele Halyard, Sarah E. James, Marion Kelly, Daphne Phillips, Megan A. Allyse. Perceptions and experiences of Black women on hereditary breast and ovarian cancer genetic testing [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A067.

AbstractBackgroundBlack breast and ovarian cancer patients are underrepresented in clinical cancer trials disproportionate to the prevalence of these cancers in Black females. Historically, lower enrollment has been attributed to individualized factors, including medical mistrust, but more recently structural factors, including systemic racism, have received additional scrutiny. We interviewed Black women with a personal or family history of breast and ovarian cancer to understand their views and experiences related to research participation.MethodsQualitative interviews were conducted via telephone or video conference and transcribed verbatim. Transcripts were qualitatively analyzed for iterative themes related to the offer and participation in cancer clinical trials and research studies, impact on cancer care, and recommendations to increase enrollment of Black patients.ResultsSixty‐one Black women completed an interview. Participants expressed that Black women are underrepresented in cancer research, and that this negatively impacted their own care. Many cited past historical abuses, including the Tuskegee syphilis trial, as a potential factor for lower enrollment but suggested that lower enrollment was better understood in the context of the entirety of their healthcare experiences, including present‐day examples of patient mistreatment or dismissal. Participants suggested that proactive community engagement, transparency, and increased representation of Black research team members were strategies likely to foster trust and bolster research participation.Conclusion(s)Medical mistrust is only a partial factor in the lower participation of Black patients in cancer research. Researchers should implement the strategies identified by our participants to promote diverse enrollment and ensure that Black patients are included in future therapeutic advances.