Death, contagion and shame: The potential of cancer survivors' advocacy in Zambia

Abstract

Cancer has become a global health concern with marked differences in the incidence and mortality rates between developing and developed countries. Understanding the factors that shape uptake of preventative and screening services is the key. We use in-depth interviews with 13 Zambian urban-based female cancer survivors to explore the facilitators and barriers to screening, diagnosis and treatment, with a particular focus on cultural influences. We identified a central theme (i.e. a story told about cancer) in all of the interviews: 'cancer is a death sentence'. Most women referenced this theme to describe their own, their family members', or community members' reactions to their diagnosis, along with references to cancer as 'contagious' and 'a shameful illness'. We also identified a theme entitled 'survivors as advocates', within which women described engaging in advocacy work to challenge stigma, misconceptions and misinformation about cancer; and advocating early detection and diagnosis, compliance with medical treatment and the sharing of success stories. This analysis points to the need for survivors to be front and center of preventative efforts. Their personal experiences, legitimacy and connections in the community, and their enthusiasm in helping others should be fostered, particularly in low-resource settings.

Racial disparities in cancer care, an eyeopener for developing better global cancer management strategies

“… 126 In many countries, talking about cancer or palliative care is fraught with cultural taboos and fears of the disease. 127 Some ethnic groups continue to believe that cancer is infectious, especially in some regions of Africa 128 which has made it difficult to manage palliative treatment and has led to the isolation of patients due to social stigma. 129 This societal outlook toward palliative care also must be acknowledged and weighed against scientific rationale with compassionate patient management and the spread of awareness.…”