Experiences of breast cancer survivor-advocates and advocates in countries with limited resources: a shared journey in breast cancer advocacy

Abstract

The last decade has been marked by rapid growth in the breast cancer advocacy movement around the world. Today such movements are well established in North America and western Europe, and are emerging and gaining momentum in regions of the world with limited resources--Africa, Asia, eastern Europe, and Latin America. Internationally breast cancer advocates have faced the challenges of dealing with many languages, cultures, countries, and health systems. Because of these differences, existing models of breast cancer advocacy are not always appropriate or reproducible across countries. At the second biennial Global Summit Consensus Conference on International Breast Health Care, 12 breast cancer survivor-advocates and advocates from around the world gave statements describing the experiences of women with breast cancer and with advocacy in their countries, and attended a roundtable meeting to discuss breast cancer advocacy from a global perspective. We used the "long table" method to analyze their comments and identify common experiences. Although participants came from diverse settings, the analysis revealed five common experiences that were consistent across cultures: 1) the experiences and fears of breast cancer survivors, 2) beliefs and taboos about breast cancer that hinder awareness programs and treatment, 3) the need for public education and breast cancer awareness programs in countries with limited resources, 4) difficulty in translating the concept and ethos of advocacy into many languages, and 5) the experiences in establishing and maintaining advocacy groups to promote breast cancer awareness and to inform public policy. These themes constitute an action agenda for breast cancer advocacy groups in countries with limited resources. In addition, they provide invaluable insight for policymakers, program planners, and others undertaking efforts to improve breast cancer outcomes in low-resource settings.