Abstract
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.