Understanding the Perspectives of Latino Community Leaders About the Burden of Cancer and Death

Abstract

As the population of Latinos in the United States (US) continues to expand, so too do the health disparities among Latinos. One health disparity critical for Latino populations is the underutilization of palliative care and other end-of-life (EOL) measures. Although the benefits of integrating palliative care interventions early on in a cancer diagnosis are well established, rural Latino populations of the US consistently lack the use of these services. The purpose of this study was to understand the perspectives of Latino community leaders about the burden of cancer and death in order to inform a larger community palliative care program for Latinos with cancer. We used a participatory action research design with 15 Latino community leaders from rural counties in eastern North Carolina. Three focus groups were conducted, recorded, and transcribed. Data were analyzed using thematic analysis techniques. One major finding was the burden that suffering from cancer places on both patients and their families. The burden of cancer was grouped into two categories: Awareness of the Burden and Relieving the Burden. These themes captured the multifaceted factors contributing to cancer burden, the effects of cancer on the entire family, particularly caregivers, and the methods used to relieve the cancer burden. Findings suggest strategies to alleviate some of the burden placed on Latino cancer patients and their families.