Exploring Stigma as a Barrier to Cancer Service Engagement: Illness Narratives of Breast Cancer Survivors in Kampala, Uganda

Abstract

Aim: The purpose of this study is to understand the role of stigma in delaying cancer service engagement for women with breast cancer in Kampala, Uganda. Background: Women in African countries are twice as likely to die from cancer than women in high-income countries.1 While access to care is limited, the high case fatality is largely attributable to late diagnosis of cases, 75-90% of women in sub-Saharan Africa are diagnosed in stage 3 and 4, significantly reducing survival.3 Stigma associated with breast cancer has been identified by previous studies in sub-Saharan Africa, however there is limited research focused on how this stigma impacts the behavior of breast cancer patients in Uganda. Method: This qualitative study uses a grounded theory approach to examine 20 illness narratives of breast cancer survivors in Uganda, gathered through in-depth semi-structured interviews. All data were collected between November-December 2014. Findings: Analysis of the data uncovered how social stigma and self-stigma associated with breast cancer impact care engagement throughout the illness experience for survivors in Uganda. The thematic analysis results showed how stigma not only delays women from engaging in care early, but also discourages women from remaining engaged with care through to treatment completion. Key factors to overcoming the stigma and engaging in care included acceptance of diagnosis, strong social support and knowledge of breast cancer. Conclusion: The growing burden of mortality associated with breast cancer worldwide can be stemmed by improving early detection through evidence-based interventions, which include accounting for key psychosocial barriers, such as stigma.