Desafios dos cuidados paliativos em crianças com doenças raras: uma revisão integrativa.

Abstract

Pediatric palliative care (PPC) is an approach aimed at improving the quality of life for children with severe and progressive illnesses, as well as for their caregivers. Despite its growing importance, the provision and implementation of PPC still face significant challenges, especially in the context of rare diseases. Objective: To explore the challenges and practices related to palliative care in children with rare diseases, highlighting the need for effective strategies to address these difficulties and ensure comprehensive and adequate care. Method: An integrative literature review was conducted, focusing on articles published between 2019 and 2024. The search was performed in the following databases: Medline and PubMed. A combination of Boolean descriptors "AND" with the following keywords was used to identify relevant studies: "pediatric palliative care," "rare diseases," and "integrated care." The final sample consisted of six articles selected for their relevance to the topic.Results and Discussion: The review revealed challenges such as the lack of specific guidelines for PPC in rare diseases, insufficient specialized training for healthcare professionals, and the need for a more coordinated multidisciplinary approach. Studies of various types, including cross-sectional and longitudinal, conducted in different research settings and with diverse populations, were evaluated. It was observed that the integration of multidisciplinary teams and continuous education are crucial for overcoming these barriers. Furthermore, the variability in PPC availability across regions and countries underscores the importance of adequate public policies and investments. Final Considerations: To improve pediatric palliative care for children with rare diseases, it is essential to promote professional training and develop specific guidelines.