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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 advocacy 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.

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 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.

Introduction: While survivor care planning is currently the focus of much research, the process of communication between providers and patients, as well as, perceptions of the patient experience during the time of transition from patient to survivor, is not well understood. While this period of transition can be one of joy and hope, emotional distress can occur for patients as they face fears of recurrence and reduced oversight of their cancer status. For African-American patients this period may include unique concerns that should be more closely investigated. To address this, the current study explored the needs, barriers, and facilitators present during the period of transition from the perspective of both oncology professionals (OP) and African-American breast cancer survivors (AA-BCS). Methods: African-American community advocates with extensive skill in elicitation conducted 29 semi-structured one-on-one interviews. Twelve OPs (e.g. social workers, nurses, oncologists) and 17 female AA-BCSs were interviewed. The interview guides were tailored for BCSs and OPs respectively, and aimed to: 1) elicit perspectives about medical and psychosocial information presented to patients 2) understand the cognitive and emotional experience of AA-BCSs as they receive medical and psychosocial information about post-treatment cancer survivorship and 3) identify perceived barriers, facilitators, and goals toward providing necessary information and emotional support to AA-BCS in particular. Interviews were transcribed, coded, and analyzed using principles of constant comparison grounded theory, in which concepts were identified and themes derived from interview data. Results: Many AA-BCSs reported feeling confident in their medical care but some noted concerns, such as, reluctance to ask questions of OPs and perceived micro-aggressions in the medical environment. Overall, AA-BCSs and OPs reported similar medical information being presented to patients (e.g., post-treatment care, medication side effects, and logistical considerations), but gaps were noted in both groups with regard to communication of psychosocial and financial resources. For instance, BCSs reported the majority of psychosocial information and social support needs were met through community-based not hospital-based programs. OPs, specifically, recognized there are often “gaps in patient handoffs” highlighting the need for more cross-communication between OPs providing dissimilar specialties. Medically, however, most AA-BCSs perceived their care as equivalent to that received by patients from other ethnicities. Few OPs identified differences in medical or cultural needs of many African-Americans, but a small number noted AA-BCSs may have more difficulty asking questions of OPs and would benefit from patient advocacy. While a limited number of OPs identified issues such as skin discoloration due to radiation, a lack of images that represented the African-American community during reconstructive surgery, the effect of historical insults on interaction with medical professionals, and the presence of more aggressive breast cancer among younger African-Americans, many OPs identified a need for more cross-cultural training. Many OPs, however, did mention observing higher rates of external social support, spirituality, and resilience among AA-BCSs, which was echoed by the AA-BCSs themselves. The benefit of compassionate communication was also identified by OPs and AA-BCSs as an important contributor to overcoming potential barriers during this period of transition. Conclusion: The results of this study suggest, medically, AA-BCSs were generally satisfied with their care, but the presence of perceived micro-aggressions and reluctance to ask questions of OPs should be further explored. OPs acknowledged the need for more cross-cultural training, but appeared reluctant to discuss perceived differences in the needs or experience of AA-BCSs. These and other issues will be presented. Citation Format: Rachel M. Ceballos, Sarah D. Hohl, Bridgette Hempstead, Jacci Thompson-Dodd, Rachel C. Malen. Perceptions of oncology professionals and African American breast cancer survivors on the experience of transitioning from breast cancer patient to survivor. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A09. doi:10.1158/1538-7755.DISP13-A09

Introduction: The population of breast cancer survivors continues to grow due to improved medical treatments and education. Yet there is a lack of comprehensive survivorship care planning to manage overall health following cancer treatment. The Institute of Medicine (IOM) recommends psychosocial components be included in survivorship care plans to address long-term psychological distress. African Americans in particular experience disproportionate levels of psychosocial distress in breast cancer survivorship. Thus the goal of this study was to understand the psychosocial needs, resources, and cultural influences during the transition from treatment to survivorship from the perspectives of both the oncology professionals and survivors themselves. Methods: Twenty-nine, semi-structured one-on-one interviews were conducted in Washington State by African-American community advocates as part of a larger on-going study. Twelve oncology professionals (OPs) and 17 female African-American breast cancer survivors (BCSs) were interviewed. Open-ended interview guides were tailored for BCSs and OPs respectively. Interviews were transcribed, coded, and analyzed using principles of constant comparison grounded theory, in which concepts were identified and themes derived from interview data. Interviews were approximately 45 minutes in duration and participants received $40 compensation for their time. Results: Similar to previous literature, psychosocial needs identified by both BCSs and OPs included fear of recurrence, emotional and financial distress, and support issues. However, the role of daily stressors and microaggressions described by many BCSs were not widely identified by OPs. BCSs also indicated a need for more empathetic interactions from OPs during medical visits. A major gap identified between the BCSs and OPs was found in the source of psychosocial information provided to BCSs. Nearly half of the BCSs indicated psychosocial support was received from community-based programs (spiritual and secular) whereas many OPs believed support was provided as part of clinical services at their institution. However, several OPs did state that there are numerous community resources available to survivors. Many professionals stated that a structured protocol is not in place to help survivors identify available services and some specifically identified the need to include psychosocial factors in the survivorship care plan. A few OPs suggested that follow-up appointments with survivors 3-, 6- and 12-months after cancer treatment may reduce feelings of isolation and lack of support. With regard to cultural factors that may impact the transition to survivorship, many of the BCSs noted they did not openly share their cancer experience with others, family/friends or professionals, which they indicated is an African-American cultural trait; specifically, the desire to appear as a “strong” woman. Some OPs also mentioned this aspect of the African-American culture as a possible barrier to communication about psychosocial well-being during medical visits. Some survivors conveyed interest in mentoring future BCSs stating a need for African Americans to support each other, but did not specifically describe how this support would differ from other sources of support. OPs discussed historical injustices as a potential source of mistrust within African American breast cancer survivors. Conclusion: While there are many areas of overlap between BCSs and OPs regarding psychosocial needs of African-American BCSs, there remain gaps of primarily social and institutional systemic barriers to care. Study limitations and some recommendations to meet the psychosocial needs of African American breast cancer survivors have emerged from the interviews and are discussed. Citation Format: Swati Somuri, Rachel M. Ceballos, Sarah H. Hohl, Rachel M. Malen, Bridgette Hempstead, Jacci Thompson-Dodd. Perspectives on transitioning from cancer treatment to breast cancer survivorship. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A61.