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.

Medical advocacy among African-American women diagnosed with breast cancer: from recipient to resource.

PURPOSE: Medical advocacy at multiple levels (self, community/interpersonal, national/public health interest) may be helpful to address the disproportionate burden of breast cancer African-American women encounter. Little, however, is known about the interplay of medical advocacy at different levels. METHODS: We analyzed qualitative data from two studies focused on the psychosocial experiences of breast cancer among 38 African-American women living in Western Washington State. RESULTS: Emergent themes suggested that survivors received community/interpersonal advocacy from different members of social networks in the form of social support (appraisal, emotional, informational, instrumental). Survivors indicated that receiving this support was associated with greater self-advocacy in terms of their own care experiences, as well as greater community/interpersonal advocacy on their part as resources to other women diagnosed with breast cancer, their family, friends, and larger communities. CONCLUSION: Our findings suggest that community/interpersonal advocacy, including providing different types of support, may lead to improved self-advocacy as well as health-protective impacts for the networks in which survivors are embedded. Future quantitative research is warranted to support these findings and assess how this interplay is associated with improved outcomes among this marginalized and resilient population.

Medical Advocacy and Supportive Environments for African-Americans Following Abnormal Mammograms.

African-American women experience disproportionately adverse outcomes relative to non-Latina White women after an abnormal mammogram result. Research has suggested medical advocacy and staff support may improve outcomes among this population. The purpose of the study was to understand reasons African-American women believe medical advocacy to be important and examine if and how staff can encourage and be supportive of medical advocacy. A convenience-based sample of 30-74-year-old women who self-identified as African-American/Black/of African descent and who had received an abnormal mammogram result was recruited from community-based organizations, mobile mammography services, and the local department of health. This qualitative study included semi-structured interviews. Patients perceived medical advocacy to be particularly important for African-Americans, given mistrust and discrimination present in medical settings and their own familiarity with their bodies and symptoms. Respondents emphasized that staff can encourage medical advocacy through offering information in general in a clear, informative, and empathic style. Cultural competency interventions that train staff how to foster medical advocacy may be a strategy to improve racial disparities following an abnormal mammogram.