Understanding the Breast Cancer Experience of Survivors: a Qualitative Study of African American Women in Rural Eastern North Carolina

Abstract

The purpose of this study is to gain an in-depth understanding of African American breast cancer survivors’ experiences, barriers and facilitators in accessing breast cancer treatment, and challenges in adherence to follow-up care. We conducted seven focus groups with 32 African American women with breast cancer in three rural counties in eastern North Carolina during August–November 2013. Surveys were also utilized to gather basic demographic and breast health history information. Thematic analysis was performed using the immersion crystallization approach. Several common areas of life affected by breast cancer included faith and support networks, psychosocial well-being, and quality of care issues. Faith in God was an important coping mechanism essential to all women in the study and a critical facilitator in survivorship. Support networks consisted of family, church-family, friends, and co-workers. The concept of fear included the discovery of breast cancer and fear of death, negative side effects of treatment, and social stigma of having breast cancer. Factors that influenced provider-patient relationship were age of provider, perceived lack of empathy, and providers leaving during treatment. Participants also expressed their lack of knowledge regarding a number of the side effects they were experiencing during and after their treatment. Results of this study contribute to the assessment of potential coping mechanisms used by African American breast cancer survivors (i.e., spirituality, positive attitudes, and support networks) that can potentially be effective and have a positive impact on the adjustment of life for survivors.