Evolving Models of Community-Based Pediatric Palliative Care in Eight Countries Across Latin America.

Abstract

High-quality pediatric palliative care is best achieved through a comprehensive interdisciplinary effort that actively involves the family and engages resources within the community. Community-based palliative care specifically strives to incorporate palliative care into local healthcare systems, adapting the most suitable model of care to each unique context. In Latin America (LATAM), there is a paucity of palliative care teams, especially pediatric palliative care teams, working outside the hospital setting and immersed in the community. Thus, it is essential to learn more about the different community-based pediatric palliative care programs in Latin America and understand their successes in providing high quality community palliative care for children in resource-constrained settings METHODS: Eight LATAM leaders from outpatient Pediatric Palliative Care (PPC) programs, invited by St. Jude Global PPC network, participated in the study based on program alignment, operational status, and willingness. While not a systematic assessment, this sample includes benchmark Community-Based Pediatric Palliative Care (CBPPC) programs. Participants completed an online survey covering program characteristics, services, team composition, funding, implementation strategies, barriers and facilitators for success. A descriptive analysis summarized the findings, highlighting the diversity of these programs. We found that the programs offer a range of services provided by an interdisciplinary team, including home-based care, telemedicine, and outpatient care. Additionally, we highlight two hospice facilities dedicated to providing pediatric palliative care. Community-based palliative care programs in Latin America are advancing patient care through community networks and alliances and are offering individualized, high-quality care tailored to the needs of patients and their families. This information is essential to understand how to develop successful community-based palliative care programs for children in other resource-constrained settings around the globe.