“If we don’t speak the language, we aren’t offered the same opportunities”: Qualitative perspectives of palliative care coordination for women of color living with metastatic breast cancer.

Abstract

88 Background: Black and Latina women with metastatic breast cancer (MBC) experience more severe distress, unaddressed symptom burden, and discordant provider communication relative to White women. Adequate care coordination has the potential to mitigate disparities in care access and outcomes, yet little is known regarding palliative care (PC) coordination experiences in women living with MBC. Methods: We conducted a qualitative thematic analysis of transcribed interviews of Black and Latina women with MBC (N=20) and interdisciplinary care providers (N=20). Participants were recruited from urban PC and oncology clinics, federally qualified health centers, and community organizations. Transcripts were reviewed and analyzed by a team of investigators, community scientists and community advisory board members. Themes were identified with inductive coding. Results: Barriers and facilitators of PC coordination were identified. Barriers included a) lack of communication between oncology, PC, and primary care teams, b) limited understanding and stigma surrounding PC among patients and non-PC providers, c) language and health literacy-related communication challenges, and d) racism and marginalization, including implicit bias and lack of diverse racial/ethnic representation in the supportive care workforce. Facilitators of PC coordination included a) patient-to-patient referrals, b) support groups breaking cultural stigma on topics including self-advocacy and PC, c) referrals from trusted providers, and d) community organization’s abilities to overcome challenges related to social determinants of health with logistical and financial support. Respondents reported barriers of quality PC coordination resulted in significant gaps in management of psychosocial and physical symptoms, including mental health, lymphedema, sexual health, cognitive health, and pain. Conclusions: Care coordination and patient reported PC outcomes are heavily influenced by social determinants of health and stigma surrounding PC. Patients and providers value patient-to-patient referrals, support groups, and community organizations in improving care coordination and early PC access. The results from this study will inform the design of ACCESS, a community navigator-led intervention for Black and Latina women with MBC focusing on acceptance of early PC and linkage to community and clinical resources.