Understanding Barriers To Access For Women With Cancers In East Africa

Background In low and middle incomes, 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 patient, financial and system-related factors. Sociocultural factors such as stigma may also play a role. Methods For Chapter 1, we examined the experience of women with breast cancer in East Africa. (Kenya and Tanzania). We carried out a qualitative study using in depth interviews to describe the experience of women with breast cancer and to describe the barriers and facilitators to care for women in this region. Women who had completed at least a year of treatment were eligible to participate and 28 ladies shared their experiences. For Chapter 2, we performed a systematic review to determine the role of stigma as a barrier to care for breast cancer diagnosis, treatment and follow up. Results In Chapter 1, 28 women were interviewed in Kenya and Tanzania. For patients who completed 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. In Chapter 2, 2372 articles were identified, 202 full text reviews performed and data extraction done on 38 studies from Africa and Asia. Anticipated stigma (21/38 studies,55.3%, CI, 38.3 -71.4%) and perceived stigma (21/38 studies,55.3%, CI 38.3 -71.4%) were the highest reported. Thirty five out of thirty-eight studies, (92.1%, CI 78.6-93%), mentioned other socio-cultural factors. The sociocultural factors mentioned in decreasing frequency were a) fatalism (65%), b) myths around breast cancer (47.4%), c) fear of surgery (39.5%) d) conservatism (34.2%), e) use of alternative medicine (28.9%) f) spirituality/religion as a barrier (23.7%) and g) collectivism. Studies that had perceived stigma had higher rates of alternative medicine use (48%, 10/21) than studies that did not have perceived stigma (6%, 1/17). No other significant differences were found between studies that had perceived stigma and those that did not (p=0.21->0.95). No other significant associations were found between stigma, sociocultural factors, region or groups studied Conclusions The sociocultural aspects of breast cancer need to be addressed in order 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 re-integration of these patients