Fear, faith and finances: health literacy experiences of English and Swahili speaking women newly diagnosed with breast and cervical cancer

Breast and cervical cancer are among the leading causes of cancer-related deaths globally. In Kenya, delayed presentation and diagnosis contribute to breast and cervical cancer mortality. The Kenyan government acknowledges the cancer burden with estimated 39,000 new cases diagnosed and 27,000 deaths per annum. Mortality can be reduced if cancer is diagnosed early and with appropriate treatment. Health Literacy (HL) about cancer screening, diagnosis and treatment is important in reducing mortality, but there is little understanding about HL levels, experiences of patients diagnosed with breast and cervical cancer and the contexts in which they make decisions. In this study, health literacy is defined as the degree to which individuals have the capacity to obtain, communicate, process and understand basic health information and services needed to make appropriate health decisions. This exploratory qualitative study investigated the HL experiences of accessing and using health information in women with any stage of breast or cervical cancer presenting at the Aga Khan University Hospital (private) or Kenyatta National Hospital (public) in Nairobi, Kenya. Data were gathered through semi-structured interviews from a purposive sample of 18 women. Interviews were transcribed verbatim, and the Consolidated criteria for reporting qualitative studies guidelines guided data analysis. The findings may aid development of patient education tools and determine effective ways of communicating cancer-related health information to improve the knowledge and health-seeking behaviours of Kenyan women. This project identified sociocultural beliefs and factors that influence how women understand information provided by healthcare professionals. Themes that arose included but were not limited to: fear, despair and agony at diagnosis, faith, social support, side effects, cancer-related stigma and financial burden of cancer as a barrier to getting information.