“The disease is mine, the body is mine, I decide”: Individual, interpersonal, and institutional barriers and facilitators among survivors of women’s cancers in Andean countries
Johnson, Caroline Mary
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Purpose: There has been a recent surge of national cancer plans to address high cancer mortality in Latin America, particularly in Andean countries. These plans primarily address institutional barriers (e.g., access, socioeconomic). Little is known about which individual, interpersonal, and institutional barriers may persist despite these policies. As well, little is known about facilitators, particularly from the perspective of cancer survivors, that can be leveraged in future research, practice, and policy. Methods: In March 2015, we conducted 15 semi-structured interviews with survivors of breast and cervical cancers during and after a Pan American Health Organization-sponsored conference on women’s cancers in Lima, Peru. We analyzed data using an inductive content analysis approach. Results: Survivors perceived multi-level barriers to engagement and retention in female reproductive cancer care in Andean countries. At the individual level, patients reported a lack of knowledge, psychological distress, and medical mistrust. At the interpersonal level, patients reported a visibly stigmatized identity due to hair loss, worry about burdening family, and insensitive provider treatment. At the institutional level, patients reported limited facility resources and poor coordination of care. Facilitators were also discussed at individual (resilient attitudes, self-advocacy), interpersonal (family support, cancer support groups), and institutional levels (financial assistance, insurance). Additionally, survivors provided recommendations for how to refine existing policy to improve the cancer care experience for patients (widespread education, provider sensitivity training, psychological support, increased treatment capacity). Conclusions: Our findings suggest that policy solutions should incorporate patient perspectives to have a comprehensive impact on cancer health.
- Global health