Cuidados oferecidos a crianças elegiveis para cuidados paliativos em ambiente hospitalar

Abstract

The study sought to analyze the care offered to eligible children for palliative care in a hospital environment. This is an exploratory study, with a quantitative and qualitative approach, carried out in 04 hospitals of the network of public institutions with hospitalization care for children in the municipality of São Luís - Maranhão. The universe of the study was composed of children hospitalized in the hospitals during the period of data collection. Using the inclusion criteria to be between 0 and 9 years old, potential indication for palliative care according to service professionals and to fall into one of the 04 groups of conditions eligible for pediatric palliatives of the Association for Children Palliative Care, emerged 133 children, that went through an expert evaluation for the application of non-inclusion criteria - not being eligible and being in final moments of life - according to the opinion of this professional. Thus, study participants were 131 children eligible for palliative care, their primary caregivers, and the professionals who provided care. The techniques for collection were interviews, participant observation and documentary analysis. From this sample, the case study of 09 children was carried out. The results are as follows: The profile of the public network for pediatric palliative care in the municipality; The socio-demographic profile of children and caregivers; The characterization of the clinical conditions of these children; The evaluation of the dynamics that involves the provision of palliative care in one of the hospitals. The process of indicating palliative care in pediatrics allows different understandings. Eligible children also had other diagnoses that helped the palliative indication. Social issues were present and fragmented care. Spirituality can help or serve as a barrier to care. Mourning care still comes down to the moment of death, with guidelines for funeral procedures. Several misunderstandings interfere in practice. We conclude that findings point to the need for investments in the training and preparation of professionals, for the sharing of decisions among the members of the team, for the rapprochement with the relatives and the reception of their symptoms of suffering, for the inclusion of this family and child in the decision-making, and to broaden the focus of care, understanding family and death as an integral part of the care process.