El estudio tuvo como objetivo conocer la experiencia de niños y adolescentes en cuidados paliativos en el manejo diario del dolor. La investigación cualitativa fue realizada con entrevistas semi-estructuradas con seis niños entre siete y 17 años. La teoría del Desarrollo cognitivo de Piaget fue utilizada como Marco teórico y la Historia Oral como Referencial Metodológico. Cuatro temas fueron encontrados: describiendo el dolor; buscando una vida más próxima de la normalidad, a pesar del dolor y la enfermedad; utilizando varias alternativas para el control del dolor y viviendo la autoimagen perjudicada. A pesar del dolor ser un agente limitante en la vida de los niños y adolescentes, verificamos que enfrentaban el dolor diariamente y, que así mismo, tenían vida además del dolor y la enfermedad. Adicionamos, aun, la importancia de los enfermeros comprender que el eficaz manejo del dolor es esencial para una vida mas próxima de la normalidad, reduciendo su sufrimiento. DESCRIPTORES ABSTRACTA qualitative study was conducted with semi-structured interviews with the aim of understanding the experience of children and adolescents under palliative care when managing pain daily and how they describe the intensity, quality and location of pain. We used Piaget's theory of cognitive development as a theoretical framework and oral history as a methodological framework. We found four themes: describing pain; seeking a life closer to normality, despite pain and disease; using a variety of alternatives for pain control; and living with damaged physical appearance. Although pain is a limiting factor in the lives of children and adolescents, we found that they faced their daily pain and still had a life beyond pain and illness. In addition, we highlight the relevance of nurses' understanding that effective management of pain in children is essential for a normal life and less suffering.

Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it.Methods: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis.Results: During the study period, 49 children died after at least 48 hours from the time of admission. Of those, 18% children were extremely premature infants and 77% children had malformations. Although necessary for all of the patients in this study, palliative care was provided for only 20% of patients who died. Among the 12 babies who were not resuscitated, 33% of babies were not in palliative care. The Pain and Palliative Care Unit of the institution followed only four neonates in palliative care. These patients were using many invasive devices, had high therapeutic investment, and also altered pain scale scores.Conclusions: This study exhibited a large proportion of newborn infants with serious diseases and health conditions. In a few cases the patients received palliative care, but most of them were not even discussed under palliative point of view. We hope that this study will call attention to the need to propose protocols and implement training for the best treatment of these children.

ABSTRACT Objective: To describe the reports of parents of newborns (NB) with congenital malformations hospitalized in a Neonatal Intensive Care Unit (NICU) who received bad news, in order to identify the issues related to the perception of bad news given adequately or inadequately. Methods: A cross-sectional study was conducted from January to October 2018, in which parents of newborns with congenital malformations hospitalized in NICUs were interviewed at visiting hours, according to inclusion criteria. The questionnaire had semi-structured questions related to reception of bad news. Analysis of the data was descriptive. Results: 28 mothers and two fathers were interviewed and 16 (53.3%) reported having had at least one bad news in the NICU. Of those, 10 (62.5%) considered appropriate the way in which the news was given. The justifications were: sincerity of the professional, delicacy to give the news, giving hope to the family, use of appropriate words and demonstration of caring about the newborn. Six participants (37.5%) considered inadequate the way of breaking bad news. The reasons were: unpreparedness and lack of knowledge about the child’s case, use of difficult language, haste or anxiety and discouragement of family hope. Most of the news was given by a professional alone, often by a medical resident. Conclusions: The communication of bad news was considered adequate by the parents, although this perception was not unanimous. This study, therefore, indicates that it is necessary to improve the communication of bad news in this NICU. Training professionals can assist in this process.

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Objetivo: compreender as vivências de mães de crianças com Síndrome de Down após o diagnóstico de Cardiopatia Congênita infantil. Método: estudo exploratório e descritivo, qualitativo, realizado por meio de entrevistas semiestruturadas com nove mães de crianças com Síndrome de Down e Cardiopatia Congênita, com dados tratados pela análise temática de conteúdo de Bardin, à luz do referencial teórico da Teoria das Representações Sociais. Resultados: a categoria principal "Vivências maternas após o diagnóstico de cardiopatia congênita no filho com Síndrome de Down" compôs-se de quatro subcategorias, que retrataram os desafios enfrentados pelas mães, desde a comunicação do diagnóstico, às reações emocionais, à maternagem e ao tratamento da condição. Considerações finais: a vivência materna com um filho com ambos os diagnósticos mostrou-se desafiadora, com uma experiência acumulativa de sofrimento.