Understanding the Breast Cancer Experience of Women in East Africa: A Qualitative Study

Abstract

Background: Breast cancer is one of the leading causes of premature death in women in East Africa. The majority of patients are diagnosed with advanced cancers (stage III and IV) which results in more cancer deaths. Even after a diagnosis of breast cancer, many patients do not complete their treatment. The reasons why delays in diagnosis and treatment occur are multilevel, involving a combination of both patient related factors, such as sociocultural reasons like stigma or fatalism, or the use of alternative medicine. Financial factors play a big role as many patients have to pay out of pocket for their health expenditure. System related factors such as a lack of resources for the diagnosis or treatment, lack of health worker knowledge leading to misdiagnosis with inappropriate treatment and poor referral pathways, also contribute to delays in care. Aim: To understand the experience of breast cancer patients in East Africa, to determine the facilitators and barriers to diagnosis, treatment and follow-up of breast cancer. Methods: 28 patients in Kenya and Tanzania who had completed at least a year of initial treatment were invited to participate in the study. A qualitative exploratory study was done using semistructured, in-depth interviews. Grounded theory was then used to analyze and develop themes that emerged from these narratives. Results: For these patients who had completed at least a year of treatment, the cost of treatment and expenses incurred was a major concern. Family disintegration emerged as a significant theme following cancer diagnosis. There was a prevalence of stigma around breast cancer and patients would not disclose their status to others in the community for fear of being ridiculed, pitied or isolated. A number of patients used alternative medicine resulting in delays in treatment. Family support, support groups and spirituality played a major role in facilitating the completion of initial care and in reducing psychological morbidity. System factors such as poor referral pathways, and inappropriate treatment emerged as minor themes. Conclusion: The sociocultural aspects of breast cancer need to be addressed to ensure comprehensive management of breast cancer patients and completion of treatment. As programs in the region, mainly run by governments, aim to improve the financial access to treatment, it would be critical to include efforts aimed at stigma reduction and interventions focusing on the sociocultural reintegration of these patients.