Culture, community, and cancer: Understandings of breast cancer from a non-lived experience among women living in Soweto.

Background: Individual perceptions compounded with socio-cultural beliefs and health system factors are key determinants of people's health seeking behavior and are widely cited as the causes of delayed breast cancer diagnosis among women from structurally vulnerable settings. Asking: "how do women with a non-lived experience of cancer understand the disease and, what informs their health seeking behaviors?", we explored individual, sociocultural and health system elements from a conceptual model derived from the Socioecological, Health Belief and Cancer Stigma Frameworks, to understand perspectives of breast cancer in a South African urban community setting. Methods: Using a deductive approach, we conducted a qualitative study consisting of 6 focus group discussions among 34 women from Soweto, Johannesburg (aged 35-74 years) and followed-up with 20 semi-structured in-depth interviews. Results: Findings revealed some awareness of breast and other cancers, but confusion and gaps in understanding of the disease, resulting in socio-culturally influenced misperceptions of risks, causes, and outcomes following treatment of breast cancer. This fueled perceptions of profound fear and stigma against people with breast and other cancers. These findings together with participant perceptions of primary healthcare providers being unwelcoming, under-resourced, and insufficiently trained to deal with breast cancer, resulted in women reporting being reluctant to participating in screening/early detection care seeking behavior. They only accessed primary care when experiencing extreme pain or ill-health. Participants suggested as solutions for future interventions, the need for sustained community engagement, harnessing existing clinic and community stakeholders and resources to provide clear and understandable breast cancer information and encouragement for screening uptake. Conclusions: Health literacy gaps surrounding breast cancer fuels socio-culturally influenced misperceptions, fear, stigma, and fatalism among community women from Soweto, South Africa. Women perceive primary care providers of having insufficient knowledge, skills, and resources to provide effective breast cancer screening services. Participants suggested the need for greater community engagement involving primary clinics and existing community stakeholders working hand in hand. Clear, understandable, and consistent information about breast cancer must be regularly disseminated and communities must be regularly encouraged to utilise breast cancer screening services.