Exploring the Cancer Experience among Samoan Survivors and Supporters

While considerable literature exists supporting the need for formal social support programs for breast cancer survivors, only a few studies have looked at the roles that informal supporters (i.e., family and friends) play in survivor quality of life and survival. The latter, however, is of considerable relevance for ethnic/racial women from culturally collective communities, such as Samoans and other Pacific Islanders (PIs). In this qualitative study we interviewed 20 survivors and 40 of their informal supporters. We used a community-based participatory research model with shared leadership from a Samoan community-based organization and academic university. Using open-ended question guides and trained, bilingual nurses as interviewers, we examined survivors' and supporters' experiences during screening, diagnosis, treatment and follow-up, probing for issues related to delays in diagnosis and treatment, disclosure of cancer, communication patterns, treatment decision making, types of social support needed and provided, sexuality and self-concept, and spirituality. We found that although 75% of the survivors relied on at least one supporter to help them make decisions about treatment, 100% of them shared feelings of worry for their supporter. Cultural dimensions of the cancer experience included use of traditional Samoan treatments, self-image (e.g., regarding hair loss), and self-reliance. Among supporters, 80% of supporters feared a recurrence, with 37.5% stating that they feel depressed or sad about their family member/friend's breast cancer experience. Approximately 10% of supporters reported lower emotional and mental status. These issues require holistic, family and community oriented approaches that respect cultural elements while destigmatizing cancer experiences.