Abstract A09: Perceptions of oncology professionals and African American breast cancer survivors on the experience of transitioning from breast cancer patient to survivor

Abstract

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