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.

Disclosure of potential conflicts of interest

No potential conflicts of interest were disclosed.

Acknowledgments

Thank you to Udie Soko from the Zambian Cancer Society and the late Amy Sikazwe from Breakthrough Cancer Trust for the many conversations, the initial contacts with participants and the provision of a quiet area to hold interviews. Special thanks go to all the women who participated in, and provided the inspiration to complete, the research and act on the results.

Ethical statement

Ethical approval was granted by two university ethics boards.

Informed consent statement

Informed consent was obtained from all study participants.

Notes

1. One participant (P11) waited 1.5 years from diagnosis to treatment (radiotherapy).

2. Typically this results from limited infrastructure, both physical structure and human resources. In addition, competing priorities between emergencies and elective surgery may lead to delays.

Additional information

Funding

MMR is funded by a fellowship from the Australian National Breast Cancer Foundation.