Understanding Stigma as a barrier to cancer prevention and treatment in Uganda and Zambia

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Project Summary/Abstract This application is being submitted in response to the Notice of Special Interest (NOSI) identified as “NOT-CA- 23-025” Administrative Supplement to Support Global Cancer Stigma Research. Cancer kills more than a half a million Africans each year with rates expected to rise over the next decade due to factors such as population growth and aging, delayed diagnosis resulting from limited knowledge of cancer, lack of biomedical treatment, and stigma. Traditionally, the majority of cancers diagnosed throughout Africa have been types associated with viral infection, particularly ‘AIDS-defining malignancies’ which place people living with HIV (PLWH) at a substantially higher risk of being diagnosed with cancer and dying of cancer compared to those who are not living with HIV. Health behaviors that increase cancer risk, such as tobacco use, are also more prevalent among PLWH and can further increase mortality from several Non-Aids defining Cancers (NADCs). Extensive research has been carried out on the impact of HIV stigma as a barrier to HIV prevention, testing, and care. Formative research carried out in our Parent Project also revealed that patient’s feared utilization of HIV- related health centers for cancer prevention and screening services, including tobacco use cessation interventions, would reveal their HIV status. Far less research has focused on cancer stigma within PLWH communities. Cancer stigma may originate from cultural stereotypes that cancer is a fatal disease, is contagious, or is a punishment for immoral behavior. Stigma associated with cancer likely contributes to delays in biomedical treatment and shame resulting from a cancer diagnosis may deter use of biomedical screening, resulting in treatment delays. Additional research on the extent and effects of cancer stigma is essential for the development of culturally sensitive interventions that enhance the reach of educational messages and increase adherence with preventive and curative treatments. We approach this gap with a one-year study examining the prevalence of cancer stigma and its impact on access to, and utilization of, cancer prevention, screening, and care services among PLWH populations in Uganda and Zambia. Cancer stigma research is essential for the development of culturally sensitive interventions and has important implications for healthcare providers, policymakers, and public health practitioners working to prevent and control cancer within PLWH in Uganda and Zambia, and other LMICs. The primary partners in the study include the Center for Tobacco Control in Africa at the Makerere University School of Public Health, and the Keck School of Medicine of USC.