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.

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

“…Disparities exist in cancer diagnosis, treatment, morbidity, and mortality among minority BCS [11][12][13][14]. Recently, investigators identified unique challenges faced by rural BCS in North Carolina [13,14].…”

“…Recently, investigators identified unique challenges faced by rural BCS in North Carolina [13,14]. They found that despite increased public awareness, silence on the topic of cancer remains pervasive within the AA community due to fear of the social stigma associated with a cancer diagnosis [13,14].…”

“…Recently, investigators identified unique challenges faced by rural BCS in North Carolina [13,14]. They found that despite increased public awareness, silence on the topic of cancer remains pervasive within the AA community due to fear of the social stigma associated with a cancer diagnosis [13,14]. Investigators also found that AA-BCS lacked access to adequate support services or culturally appropriate cancer resources across the cancer continuum (diagnosis to postcancer care) [13,14].…”

“…They found that despite increased public awareness, silence on the topic of cancer remains pervasive within the AA community due to fear of the social stigma associated with a cancer diagnosis [13,14]. Investigators also found that AA-BCS lacked access to adequate support services or culturally appropriate cancer resources across the cancer continuum (diagnosis to postcancer care) [13,14]. Rural AA-BCS expressed significant concerns about interactions with their health care providers, as they perceived a lack of empathy and patience [14].…”

Significados que construyen mujeres afrodescendientes frente al cáncer de mama y cuello uterino, atendidas en Medellín, Colombia

“…Estudios realizados con mujeres afrodescendientes, revelan múltiples significados otorgados de manera individual y social al cáncer; así con relación al CaMa se ha encontrado que existen factores culturales relacionados con las creencias sobre la enfermedad, el miedo al cáncer y a la muerte, el desconocimiento frente a los efectos adversos de los tratamientos, las relaciones familiares, el soporte familiar y la espiritualidad, además múltiples barreras del sistema de salud para realizarse los tratamientos y seguimientos (7) . En mujeres africanas con CaCu, se encontró que el contagio de la enfermedad ha estado asociado al ejercicio de la sexualidad y con conductas sexuales socialmente inapropiadas para el género, como promiscuidad o prostitución, por lo que padecer CaCu conlleva una gran carga emocional adicional para ellas, asociada a la estigmatización sexual (8) .…”