Oncology provider and African-American breast cancer survivor perceptions of the emotional experience of transitioning to survivorship

PURPOSE: To examine the emotional experience of African American breast cancer survivors (BCS), and the information exchange between providers and patients, during transitioning to post-treatment survivorship RESEARCH APPROACH: We conducted a qualitative study using interviews and focus groups. PARTICIPANTS: We sought perspectives of oncology providers (n = 27) and African-American breast cancer survivors (BCS) (n = 45) who provided and received care in three counties in Washington State. METHODS: African-American community consultants conducted interviews and focus groups. Thematic coding and constant comparison were applied to identify emergent themes. FINDINGS: Participants reported emotional health information and support were needed but not consistently provided, resulting in a sense of survivor isolation. Systemic challenges limited providers’ ability to deliver emotional support information. Survivors and providers expressed similar understandings of the emotional impact of transition, but each group highlighted different, yet complementary priorities to address emotional needs of African-American BCS. CONCLUSIONS: There is congruence between African-American BCS and oncology providers perceptions of the emotional experience of transitioning to post-treatment survivorship, but patients are not receiving adequate information and resources to help them adequately address their emotional needs. IMPLICATIONS FOR POLICY: Improved care continuity, team-based approaches, and partnerships between health systems and community organization partnerships may help patients and providers recognize and address emotional needs during the transition.