Influences that are connected to the beginning and conduct of palliative care in pediatrics

Abstract

Palliative care improves the quality of life for patients with life-threatening illnesses, their families and medical staff. They should be performed early in the process of disease evolution, always in conjunction with curative therapy. We investigated which influences are related to the conduct of palliative care in Brazilian children. Data were analyzed qualitatively by the software IRAMUTEQ (Interface de R pour les Analyzes Multidimensionnelles de Textes et de Questionnaires). The analysis performed by IRAMUTEQ selected words with p<0.05. The process of pre-testing the questions was carried out with pediatricians from the institution where the researcher works, to analyze the perception of these professionals regarding the applicability of the questions and their objectives in relation to the various questions about pediatric palliative care found in the scientific literature. The instrument was validated and 236 questionnaires were subsequently sent to physicians from the National Academy of Palliative Care, between July 2018 and December 2019, who worked with this care in the Brazilian child population. The bibliographic material was obtained by searching the Scielo, Lilacs, Cochrane and Pubmed databases for articles published until 2020, selected for their relevance in the scientific literature. Ethical recommendations for research with human subjects were followed. In pediatrics, the understanding of palliative care is often mistaken or incomplete when it is assumed that it is only applied in the final stage of the disease. Health professionals must provide this care not only to patients, but also to family members, even after death, in a multidisciplinary and personalized way. There are difficulties in implementing palliative care. In Brazil. It was possible to observe that health professionals have difficulties, resulting from different influences, which make communication and care with the child and their family difficult in relation to death. There are several influences that make it difficult to conduct palliative care and that need to be worked on in their fields by the multiprofessional team, together with the family, with a tendency to create a new culture based on the true meaning of palliative care.