Patient Advocacy Approaches to Improving Care for Breast and Cervical Cancer in East and Southern Africa.

Abstract

PURPOSEBreast and cervical cancer are the most common cancers among women in East and Southern Africa, where mortality remains high because of late diagnosis and limited access to treatment. We explored local approaches to breast and cervical cancer advocacy to identify the most pressing issues and opportunities for increasing the impact of civil society activities in the region.METHODSFocus group discussions were conducted with participants of the 2016 Women’s Empowerment Cancer Advocacy Network (WE CAN) Summit in Nairobi, Kenya. Discussions were audio-recorded, transcribed, coded, and analyzed for emergent themes. Results were presented to participants of 2019 WE CAN summit for cross-validation.RESULTSFour focus group discussions were conducted with 50 participants. Thirty-six (70%) identified as advocates, 30 (59%) as cancer survivors, 14 (27%) as nongovernmental organization representatives, 13 (25%) as researchers, 4 (8%) as clinicians, and 6 (8%) as policymakers. Although most participants focused on cancer awareness and screening/early detection, some noted that treatment was often unavailable and advocated for a broader strategy to improving access to care. Challenges to designing and implementing such a strategy included knowledge gaps in addressing late diagnosis and access to care, difficulty collaborating with like-minded organizations, approaching policymakers, and addressing treatment financing. Cancer coalitions, although rare, were crucial to building collaborations with ministries of health, policymakers, and international organizations that advanced breast and cervical cancer care.CONCLUSIONParticipants indicated that they would benefit from additional training about resource-appropriate best practices for improving breast and cervical cancer care and outcomes. Coalition-building and collaborations, including with oncologists and other medical professionals involved in cancer care, were crucial to leveraging limited resources, sharing lessons learned, and developing local solutions to common challenges.