Evaluating Survivorship Experiences and Needs Among Rural African American Breast Cancer Survivors

Abstract

Disparities in cancer survivorship exist among specific populations of breast cancer survivors, specifically rural African American breast cancer survivors (AA-BCS). While effective survivorship interventions are available to address and improve quality of life, interventions must be culturally tailored for relevance to survivors. Here, we report the results of our formative research using focus groups and in-depth interview to better understand unique rural AA-BCS survivorship experiences and needs in the Alabama Black Belt. Surveys were used to gather sociodemographic and cancer treatment data. Fifteen rural AA-BCS shared their experiences and concerns about keeping their cancer a secret, lack of knowledge about survivorship, lingering symptoms, religion and spirituality, cancer surveillance, and general lack of survivorship education and support. Rural AA-BCS were unwilling to share their cancer diagnosis, preferring to keep it a secret to protect family and friends. Quality-of-life issues like lymphedema body image and sexuality were not well understood. They viewed spirituality and religion as essential in coping and accepting cancer. Participants also discussed the importance of and barriers to maintaining health through regular check-ups. They needed social support from family and friends and health care providers. Overall, rural AA-BCS expressed their need for knowledge about survivorship self-management by providing a vivid picture of the realities of cancer survival based on shared concerns for survivorship support and education within the context of culture.

Keywords: African American females; Breast cancer survivorship; Cancer education; Quality of life; Rural.