"You have to empower your own self so you can be prepared for this journey”: A model of cancer health literacy

As the numbers of Alaska Native people experiencing cancer and cancer survivorship continues to rise, so do the demands for empowering information resources. Health literacy - defined as the capacity to obtain, process, and understand health information and services - is critical to empowerment and quality of life for survivors and their loved ones. Hopeful Connections is a community-academic partnership of the Fairbanks Native Association (a non-profit organization serving over 6000 Alaska Native residents in Alaska's Interior Region) and the University of Alaska Fairbanks' Center for Alaska Native Health Research (a NIH-funded center focused on reducing Alaska Native health disparities). Within this partnership, we conducted in-depth interviews with 28 Alaska Native cancer survivors to elucidate the factors that facilitate or challenge survivorship quality of life. In this presentation we describe the theoretical model of cancer health literacy that emerged from qualitative analysis of survivors' reports and stories. Illustrated in this dynamic model is the central role that one's sources of information play throughout their cancer journey. In this capacity, the information conveyed facilitates the initial ‘sinking-in' process, whereby survivors acknowledge their diagnosis and the need to move forward. Continued information seeking further serves to empower survivors as they navigate the on-going, life-long processes of treatment decision-making, symptom management, and healthy short and long-term survival. Empowered by enhanced health literacy, cancer survivors gain a unique expertise, and the opportunity to become a new and critical source of information to other survivors who are also navigating their cancer journeys.