The Sleep Patterns of Children and Adolescents with Chronic Conditions and Their Families: An Integrative Literature Review.

Sleep is of vital necessity for health, and it has a restorative and protective function for children and adolescents with chronic conditions and their families. The purpose of this study was to identify the scientific production on sleep patterns in children and adolescents with chronic conditions and their families. This integrative review was conducted between March and June 2022 using the databases of MEDLINE, Web of Science, CINAHL and PsycINFO. The articles included were original papers published between January 2007 and mid-2022. Excluded were review studies that did not evaluate sleep and whose participants did not have chronic conditions or were not children, adolescents and/or their families. The searches returned 814 abstracts. After exclusions, 47 studies were selected to be read in full; of these, 29 were selected and were grouped empirically into four categories: major alterations in the sleep patterns of children and adolescents with chronic conditions; the relationship between sleep disorders and symptoms in children and adolescents with chronic conditions; the impaired sleep patterns of families of children and adolescents with chronic conditions; and sleep alterations and their relationship with other problems in families of children and adolescents with chronic conditions. All studies showed sleep pattern impairment in children and adolescents with chronic conditions as well as their families.

Desenhar, escrever e contar: qualidade de vida da criança e adolescente com condição crônica / Draw, write and tell interview: Quality of life of children and adolescents with chronic condition / Dibujar, escribir y contar: calidad de vida de niños y adolescentes con enfermedades crónicas

Objetivo: compreender por meio da técnica Desenhar, escrever e contar como a condição crônica influencia na qualidade de vida infantojuvenil; e analisar o uso da técnica nessa população. Método: estudo qualitativo, descritivo e exploratório. Participaram onze crianças e adolescentes com condição crônica entre sete e dezessete anos. A coleta de dados ocorreu mediante entrevista semiestruturada, com auxílio da técnica Desenhar, escrever e contar, em um Hospital público. Para análise dos dados utilizou-se a análise de conteúdo temática de Bardin. Resultados: emergiram três categorias que evidenciam diversas alterações na qualidade de vida dessa clientela, com destaque para o comprometimento físico, emocional e social que impacta nas de experiências que compõem a infância e a adolescência. A técnica Desenhar, escrever e contar foi um facilitador e enriqueceu a coleta de dados. Considerações finais: a técnica escolhida possibilitou identificar a qualidade de vida prejudicada da criança e adolescente com condição crônica.

Objective: to understand, through the Draw, Write and Tell interview technique how chronic condition influences pediatric quality of life; To analyze the use of the technique in this population. Method: qualitative, descriptive, exploratory study. Eleven children and adolescents with chronic conditions between seven and seventeen years old participated. Data collection took place through semi-structured interviews, with the aid of the Draw, Write and Tell interview technique, in State University Hospital. For data analysis, thematic content analysis according to Bardin was used. Results: three categories emerged that show several changes in the quality of life of this clientele, with emphasis on the physical, emotional and social impairment that impact on the experiences that make up childhood and adolescence. The Draw, Write and Tell interview technique facilitated and enriched data collection. Final considerations: The chosen technique made it possible to identify the impaired quality of life of children and adolescents with chronic conditions.

Objetivo: comprender, a través de la técnica de entrevista Dibujar, Escribir y Contar, cómo la condición crónica influye en la calidad de vida infantojuvenil; y analizar el uso de la técnica en esta población. Método: estudio cualitativo, descriptivo y exploratorio. Participaron once niños y adolescentes, con condiciones crónicas, de siete a diecisiete años. La recolección de datos ocurrió por medio de entrevistas semiestructuradas, con el auxilio de la técnica de entrevista Dibujar, Escribir y Contar, en un hospital público. En cuanto al análisis de datos, se utilizó el análisis de contenido temático de Bardin. Resultados: surgieron tres categorías que muestran varios cambios en la calidad de vida de esta clientela, con énfasis en el deterioro físico, emocional y social que tiene un gran impacto en las experiencias que componen la infancia y la adolescencia. La técnica Dibujar, Escribir y Contar facilitó y enriqueció la recolección de datos. Consideraciones finales: la técnica elegida permitió identificar la calidad de vida deteriorada de niños y adolescentes con condiciones crónicas.

School reintegration of children and adolescents with chronic illness from the mothers' perspective: A qualitative study.

INTRODUCTION: The diagnosis of chronic illness in childhood implies frequent hospitalizations and, consequently, the interruption of school attendance. This study aimed to understand the process of school reintegration of children and adolescents with chronic illness from the mothers' perspective. METHOD: A qualitative descriptive-exploratory study was conducted with mothers who experienced the process of school reintegration of their child or adolescent, aged between 8 and 17 years old, and diagnosed with chronic illness. The participants were recruited by convenience and interviewed at the paediatric unit of a children's hospital. Data collection was interrupted when the data set was sufficient to answer the research question. The interviews were analysed using inductive thematic analysis. The study was approved by the research ethics committee. RESULTS: Eleven interviews were conducted, 10 with mothers and one with a grandmother, who played the maternal role. Participants' age ranged between 33 and 58 years old. A theme was developed-"School reintegration under the maternal vigilance"-which encompasses four subthemes: (1) What matters? My child's health comes first; (2) How to keep in touch with the school? (3) Back to the school: Are we ready? (4) Sharing vigilance: reality and expectations. The themes highlighted a cyclical, dynamic, and subjective school reintegration process, constantly permeated by maternal vigilance. CONCLUSION: A new understanding about school reintegration was evidenced, from the perspective of mothers of children and adolescents with different chronic illnesses. Mothers and children experience a nonlinear and recurrent process of leaving and returning to school, surrounded by a lack of communication and continuity in school activities. The results of this study may assist health professionals in planning care focused on the needs of the school reintegration of this population.

Adolescents' understanding of chemotherapy-related adverse events: a concept elicitation study.

OBJECTIVE: to document adolescents' understanding of chemotherapy-related core adverse events from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events and thus begin the validation process of this tool's items with Brazilian adolescents. METHOD: this is a prospective, qualitative study of concept elicitation. The participants were 17 adolescents aged 13-18 years and undergoing chemotherapy in three hospitals in São Paulo - SP, Brazil. Cognitive interviews were conducted with questions based on chemotherapy-related adverse events. Data were analyzed for responsiveness and missingness. RESULTS: adolescents could and were willing to provide descriptive information about their chemotherapy adverse events, including physical and emotional events. Some participants suggested alternative terms to name the adverse events and some used more complex terms, but most were satisfied with the primary terms used by the researchers. CONCLUSION: this study represents the first steps towards understanding how adolescent cancer patients identify, name, and describe these events by cognitive interviewing to help design future assessment instruments focused on this age group. KEYPOINTS: (1) Adolescents' voice is a priority in reporting chemotherapy-related adverse events. (2) Adverse events (AEs) inquiry may best be initiated with open-ended questions. (3) Elicitation studies can include the voices of the target population. (4) Adolescents with cancer can self-report clinically relevant chemotherapy AEs.

Parental psychosocial needs in Brazilian paediatric intensive care units.

BACKGROUND: Having children admitted in the intensive care unit is a demanding experience for parents. They encounter several difficulties during this process, and it is important to properly identify their psychosocial needs for the health team to address appropriately. OBJECTIVE: The aim of the study is to identify the psychosocial needs encountered by parents of children in pediatric intensive care units in Brazil. METHODS: A descriptive study with a qualitative approach was used to increase understanding of psychosocial experiences of parents. Individual semi-structured interviews were conducted with 11 parents of hospitalized children in pediatric intensive care units in Brazil. Thematic analysis was used to analyze the data. The university ethics review committee approved the research protocol. All parents were informed on study details and provided written consent prior to the interview. RESULTS: Four themes were constructed: 1) Support from family and peers; 2) Support from the healthcare team; 3) Parental role; and 4) Emotional recovery. Parents expressed diverse psychosocial needs based on family and peer social support, child's clinical condition, as well as the structure, norms, and routines of health care teams during hospitalization. CONCLUSIONS: The findings highlight the importance of nursing assessment of psychosocial experiences encountered by parents of children in pediatric intensive care units, which will guide planning of individualized interventions and to increase family-centered care in pediatric intensive care units.

Adolescents' understanding of chemotherapy-related adverse events: a concept elicitation study / Compreensão dos adolescentes sobre eventos adversos relacionados à quimioterapia: um estudo de elicitação de conceitos / La comprensión de los adolescentes de los efectos adversos relacionados con la quimioterapia: un estudio de elicitación de conceptos

Abstract Objective: to document adolescents' understanding of chemotherapy-related core adverse events from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events and thus begin the validation process of this tool's items with Brazilian adolescents. Method: this is a prospective, qualitative study of concept elicitation. The participants were 17 adolescents aged 13-18 years and undergoing chemotherapy in three hospitals in São Paulo - SP, Brazil. Cognitive interviews were conducted with questions based on chemotherapy-related adverse events. Data were analyzed for responsiveness and missingness. Results: adolescents could and were willing to provide descriptive information about their chemotherapy adverse events, including physical and emotional events. Some participants suggested alternative terms to name the adverse events and some used more complex terms, but most were satisfied with the primary terms used by the researchers. Conclusion: this study represents the first steps towards understanding how adolescent cancer patients identify, name, and describe these events by cognitive interviewing to help design future assessment instruments focused on this age group.

Resumo Objetivo: documentar a compreensão dos adolescentes sobre os principais eventos adversos relacionados à quimioterapia a partir da versão Pediátrica dos Desfechos Relatados pelo Paciente (Patient-Reported Outcomes) dos Critérios de Terminologia Comum para Eventos Adversos (Common Terminology Criteria for Adverse Events), e assim iniciar o processo de validação dos itens desta ferramenta com adolescentes brasileiros. Método: trata-se de um estudo prospectivo, qualitativo, de elicitação de conceitos. Participaram do estudo 17 adolescentes de 13 a 18 anos, submetidos à quimioterapia em três hospitais da cidade de São Paulo-SP, Brasil. Foram realizadas entrevistas cognitivas com perguntas baseadas em eventos adversos relacionados à quimioterapia. Os dados foram analisados quanto à responsividade e ausência de resposta. Resultados: os adolescentes puderam e estavam dispostos a fornecer informações descritivas sobre seus eventos adversos quimioterápicos, incluindo eventos físicos e emocionais. Alguns participantes sugeriram nomes alternativos para os eventos adversos e alguns usaram termos mais complexos, mas a maioria ficou satisfeita com aqueles utilizados pelos pesquisadores. Conclusão: este estudo representa os primeiros passos para entender como os adolescentes com câncer identificam, nomeiam e descrevem esses eventos por meio de entrevistas cognitivas para ajudar a criar futuros instrumentos de avaliação focados nessa faixa etária.

Resumen Objetivo: documentar la comprensión de los adolescentes de los principales eventos adversos relacionados con la quimioterapia a partir de la versión de los Criterios Terminológicos Comunes para Eventos Adversos reportados por los pacientes pediátricos y así iniciar el proceso de validación de los ítems de esta herramienta con adolescentes brasileños. Método: este es un estudio prospectivo y cualitativo de elicitación de conceptos. Los participantes fueron 17 adolescentes de entre 13 y 18 años de edad que recibían quimioterapia en tres hospitales de São Paulo-SP, Brasil. Se realizaron entrevistas cognitivas con preguntas basadas en eventos adversos relacionados con la quimioterapia. Los datos se analizaron en función de la presencia y ausencia de respuesta. Resultados: los adolescentes podían y estaban dispuestos a proporcionar información descriptiva sobre los efectos adversos de la quimioterapia, incluidos los físicos y emocionales. Algunos participantes sugirieron términos alternativos para denominar los eventos adversos y otros utilizaron términos más complejos, pero la mayoría se mostró satisfecha con los términos principales utilizados por los investigadores. Conclusión: este estudio representa los primeros pasos hacia la comprensión de cómo los pacientes adolescentes con cáncer identifican, nombran y describen estos eventos mediante entrevistas cognitivas para ayudar a diseñar futuros instrumentos de evaluación centrados en este grupo de edad.

Management of chemotherapy-related symptoms in children and adolescents: family caregivers' perspectives.

OBJECTIVE: To describe the chemotherapy-associated symptoms and the strategies used for their management from the perspective of pediatric cancer patients' family caregivers. METHODS: This is a descriptive study with qualitative data analysis. Data collection took place in a pediatric hospital, from December 2017 to December 2018, with family caregivers of pediatric patients undergoing chemotherapy. Semi-structured interviews, subjected to inductive content analysis, were carried out. Concepts from the Symptom Management Theory were used to discuss the results. RESULTS: Eighteen family caregivers participated. The participants mentioned: physical symptoms, especially weakness, alopecia, low immunity, pain, mucositis, constipation, nausea, and vomiting; emotional or psychosocial symptoms such as sadness and mood changes; and constitutional symptoms such as loss of appetite and fever. Pharmacological and non-pharmacological measures were mentioned in the management of symptoms and adverse effects. CONCLUSION: Participants demonstrated skills to identify and manage symptoms of chemotherapy. Knowing the experience of these families can help nurses in planning care and interventions to minimize these events.

Coronavirus infection and nursing care for children and adolescents with cancer.

OBJECTIVE: Reflect on the implications of COVID-19 for the nursing care of pediatric oncology patients. METHODS: Theoretical and reflective essay, based on recent scientific publications and expert recommendations on the care of pediatric patients under cancer treatment in the context of the current pandemic. RESULTS: Reflected on the involvement of the pediatric population in general by COVID-19, the vulnerability of pediatric oncology patients to the complications of the disease and the likely challenges for their care. The pandemic demanded a rapid adaptation of health services in terms of patient care flow, care protocols, infection prevention measures, and redefinition of cancer therapy, with repercussions for professionals, patients, and their families. FINAL CONSIDERATIONS: It is not yet known how often or how severely children with cancer have been affected by COVID-19, but therapeutic and care adaptations for the maintenance of these patients' treatment in the pandemic context are noted.

Management of chemotherapy-related symptoms in children and adolescents: family caregivers' perspectives / Gestión de los síntomas relacionados con la quimioterapia em niños y adolescentes: perspectivas de cuidadores familiars / Gerenciamento dos sintomas relacionados à quimioterapia em crianças e adolescentes: perspectivas de cuidadores familiares

ABSTRACT Objective: To describe the chemotherapy-associated symptoms and the strategies used for their management from the perspective of pediatric cancer patients' family caregivers. Methods: This is a descriptive study with qualitative data analysis. Data collection took place in a pediatric hospital, from December 2017 to December 2018, with family caregivers of pediatric patients undergoing chemotherapy. Semi-structured interviews, subjected to inductive content analysis, were carried out. Concepts from the Symptom Management Theory were used to discuss the results. Results: Eighteen family caregivers participated. The participants mentioned: physical symptoms, especially weakness, alopecia, low immunity, pain, mucositis, constipation, nausea, and vomiting; emotional or psychosocial symptoms such as sadness and mood changes; and constitutional symptoms such as loss of appetite and fever. Pharmacological and non-pharmacological measures were mentioned in the management of symptoms and adverse effects. Conclusion: Participants demonstrated skills to identify and manage symptoms of chemotherapy. Knowing the experience of these families can help nurses in planning care and interventions to minimize these events.

RESUMEN Objetivo: Describir los síntomas asociados al tratamiento quimioterapico y las estrategias utilizadas para su gestión en la perspectiva de cuidadores familiares de pacientes oncológicos pediátricos. Método: Estudio descriptivo, con análisis cualitativo de los datos. La colecta de los datos ocurrió en un hospital pediátrico, entre los meses de diciembre de 2017 y diciembre de 2018, con cuidadores familiares de pacientes pediátricos en tratamiento quimioterapico. Se realizaron entrevistas semiestructuradas sometidas al análisis de contenido inductivo. Se utilizaron conceptos de la Symptom Management Theory para la discusión de los resultados. Resultados: Participaron 18 cuidadoras familiares. Fueron citados por las participantes: síntomas físicos, principalmente, debilidad, alopecia, baja inmunidad, dolor, mucositis, constipación, mareo y vómitos; síntomas emocionales o psicosociales, como tristeza y alteraciones del humor y síntomas constitucionales como inapetencia y fiebre. Medidas farmacológicas y no farmacológicas fueron mencionadas en la gestión de los síntomas y de los efectos adversos. Conclusión: Las participantes demostraron habilidades para identificar y gestionar los síntomas de la quimioterapia. Conocer la experiencia de esas familias puede auxiliar el enfermero en la planificación del cuidado y de intervenciones que atenúen esos eventos.

RESUMO Objetivo: Descrever os sintomas associados ao tratamento quimioterápico e as estratégias utilizadas para seu gerenciamento na perspectiva de cuidadores familiares de pacientes oncológicos pediátricos. Métodos: Estudo descritivo, com análise qualitativa dos dados. A coleta dos dados deu-se em um hospital pediátrico, de dezembro de 2017 a dezembro de 2018, com cuidadoras familiares de pacientes pediátricos em quimioterapia. Realizaram-se entrevistas semiestruturadas, submetidas à análise de conteúdo indutiva. Utilizaram-se conceitos da Symptom Management Theory para a discussão dos resultados. Resultados: Participaram 18 cuidadoras familiares. Foram citados pelas participantes: sintomas físicos, principalmente fraqueza, alopecia, baixa imunidade, dor, mucosite, constipação, náuseas e vômitos; sintomas emocionais ou psicossociais, como tristeza e alterações de humor; e sintomas constitucionais, como inapetência e febre. Medidas farmacológicas e não farmacológicas foram mencionadas no gerenciamento dos sintomas e dos efeitos adversos. Conclusão: As participantes demonstraram habilidades para identificar e gerenciar os sintomas da quimioterapia. Conhecer a experiência dessas famílias pode auxiliar o enfermeiro no planejamento do cuidado e de intervenções que minimizem esses eventos.

Coronavirus infection and nursing care for children and adolescents with cancer / Infecciones por coronavirus y los cuidados de enfermería dirigidos a niños y adolescentes con cancer / Infecções por coronavírus e os cuidados de enfermagem direcionados a crianças e adolescentes com cancer

ABSTRACT Objective: Reflect on the implications of COVID-19 for the nursing care of pediatric oncology patients. Methods: Theoretical and reflective essay, based on recent scientific publications and expert recommendations on the care of pediatric patients under cancer treatment in the context of the current pandemic. Results: Reflected on the involvement of the pediatric population in general by COVID-19, the vulnerability of pediatric oncology patients to the complications of the disease and the likely challenges for their care. The pandemic demanded a rapid adaptation of health services in terms of patient care flow, care protocols, infection prevention measures, and redefinition of cancer therapy, with repercussions for professionals, patients, and their families. Final considerations: It is not yet known how often or how severely children with cancer have been affected by COVID-19, but therapeutic and care adaptations for the maintenance of these patients' treatment in the pandemic context are noted.

RESUMEN Objetivo: Reflejar acerca de implicaciones de COVID-19 a los cuidados de enfermería con pacientes oncológicos pediátricos. Métodos: Ensayo teórico-reflexivo, basado en publicaciones científicas recientes y recomendaciones de especialistas acerca del cuidado con pacientes pediátricos en tratamiento oncológico del contexto de la actual pandemia. Resultados: Reflejó acerca del acometimiento de la población pediátrica en general por COVID-19, la vulnerabilidad de pacientes pediátricos oncológicos a las complicaciones de la enfermedad y probables desafíos para su cuidado. La pandemia exigió una rápida adecuación de los servicios de salud cuanto al flujo de atención de pacientes, protocolos asistenciales, medidas de prevención de infección y redefinición de la terapéutica oncológica, con repercusiones a los profesionales, pacientes y sus familias. Consideraciones finales: Aún no se sabe con que frecuencia o gravedad niños con cáncer son afectados por COVID-19, pero perciben adaptaciones terapéuticas y asistenciales a la manutención del tratamiento de esos pacientes del contexto de pandemia.

RESUMO Objetivo: refletir sobre as implicações da COVID-19 para os cuidados de enfermagem com pacientes oncológicos pediátricos. Métodos: ensaio teórico-reflexivo, a partir de publicações científicas recentes e recomendações de especialistas sobre o cuidado com pacientes pediátricos em tratamento oncológico no contexto da atual pandemia. Resultados: refletiu-se sobre o acometimento da população pediátrica em geral pela COVID-19, a vulnerabilidade dos pacientes pediátricos oncológicos às complicações da doença e os prováveis desafios para seu cuidado. A pandemia exigiu uma rápida adequação dos serviços de saúde quanto a fluxo de atendimento de pacientes, protocolos assistenciais, medidas de prevenção de infecção e redefinição da terapêutica oncológica, com repercussões para os profissionais, pacientes e suas famílias. Considerações finais: Ainda não se sabe com que frequência ou gravidade crianças com câncer têm sido afetadas pela COVID-19, porém notam-se adaptações terapêuticas e assistenciais para a manutenção do tratamento desses pacientes no contexto de pandemia.

Coronavirus infection and nursing care for children and adolescents with cancer / Infecciones por coronavirus y los cuidados de enfermería dirigidos a niños y adolescentes con cancer / Infecções por coronavírus e os cuidados de enfermagem direcionados a crianças e adolescentes com cancer

ABSTRACT Objective: Reflect on the implications of COVID-19 for the nursing care of pediatric oncology patients. Methods: Theoretical and reflective essay, based on recent scientific publications and expert recommendations on the care of pediatric patients under cancer treatment in the context of the current pandemic. Results: Reflected on the involvement of the pediatric population in general by COVID-19, the vulnerability of pediatric oncology patients to the complications of the disease and the likely challenges for their care. The pandemic demanded a rapid adaptation of health services in terms of patient care flow, care protocols, infection prevention measures, and redefinition of cancer therapy, with repercussions for professionals, patients, and their families. Final considerations: It is not yet known how often or how severely children with cancer have been affected by COVID-19, but therapeutic and care adaptations for the maintenance of these patients' treatment in the pandemic context are noted.

RESUMEN Objetivo: Reflejar acerca de implicaciones de COVID-19 a los cuidados de enfermería con pacientes oncológicos pediátricos. Métodos: Ensayo teórico-reflexivo, basado en publicaciones científicas recientes y recomendaciones de especialistas acerca del cuidado con pacientes pediátricos en tratamiento oncológico del contexto de la actual pandemia. Resultados: Reflejó acerca del acometimiento de la población pediátrica en general por COVID-19, la vulnerabilidad de pacientes pediátricos oncológicos a las complicaciones de la enfermedad y probables desafíos para su cuidado. La pandemia exigió una rápida adecuación de los servicios de salud cuanto al flujo de atención de pacientes, protocolos asistenciales, medidas de prevención de infección y redefinición de la terapéutica oncológica, con repercusiones a los profesionales, pacientes y sus familias. Consideraciones finales: Aún no se sabe con que frecuencia o gravedad niños con cáncer son afectados por COVID-19, pero perciben adaptaciones terapéuticas y asistenciales a la manutención del tratamiento de esos pacientes del contexto de pandemia.

RESUMO Objetivo: refletir sobre as implicações da COVID-19 para os cuidados de enfermagem com pacientes oncológicos pediátricos. Métodos: ensaio teórico-reflexivo, a partir de publicações científicas recentes e recomendações de especialistas sobre o cuidado com pacientes pediátricos em tratamento oncológico no contexto da atual pandemia. Resultados: refletiu-se sobre o acometimento da população pediátrica em geral pela COVID-19, a vulnerabilidade dos pacientes pediátricos oncológicos às complicações da doença e os prováveis desafios para seu cuidado. A pandemia exigiu uma rápida adequação dos serviços de saúde quanto a fluxo de atendimento de pacientes, protocolos assistenciais, medidas de prevenção de infecção e redefinição da terapêutica oncológica, com repercussões para os profissionais, pacientes e suas famílias. Considerações finais: Ainda não se sabe com que frequência ou gravidade crianças com câncer têm sido afetadas pela COVID-19, porém notam-se adaptações terapêuticas e assistenciais para a manutenção do tratamento desses pacientes no contexto de pandemia.

Estado de saúde e representações sobre a doença na perspectiva de portadores de diabetes mellitus / El estado de la salud y las representaciones acerca de la enfermedad desde la perspectiva de pacientes con diabetes mellitus / Health state and representations about the disease from the perspective of patients with diabetes mellitus

Objetivo avaliar o estado de saúde e suas dimensões em pacientes com Diabetes Mellitus, atendidos em um hospital de ensino, à luz do Modelo do Senso Comum. Método estudo descritivo, com análise qualitativa dos dados. Participaram 20 pacientes hospitalizados e em atendimento ambulatorial. Os dados foram submetidos à análise de conteúdo e interpretados segundo os conceitos do Modelo do Senso Comum. Resultados os discursos foram categorizados de acordo com a identidade da doença e suas concepções; duração e tempo para o diagnóstico e os sintomas; causas da doença e suas explicações; consequências e tratamento; controle e percepções sobre o prognóstico. Considerações finais as concepções do estado de saúde e suas dimensões relacionadas ao Diabetes Mellitus, interpretadas à luz do Modelo do Senso Comum, descreveram-no como uma doença com sinais físicos e com potencial de complicação, inclusive associada à morte; contudo, também revelaram o desconhecimento das reais causas e consequências da doença.

Objetivo evaluar el estado de salud y sus dimensiones en pacientes con Diabetes Mellitus tratados en un hospital docente a la luz del Modelo de Sentido Común. Método es un estudio descriptivo con análisis cualitativo de los datos. Participaron veinte pacientes hospitalizados y en atención ambulatoria. Los datos fueron sometidos al análisis de contenido e interpretados de acuerdo con los conceptos del Modelo de Sentido Común. Resultados los discursos fueron categorizados de acuerdo con la identidad de la enfermedad y sus conceptos; duración y tiempo para el diagnóstico y los síntomas; causas de la enfermedad y sus explicaciones; consecuencias y tratamiento; control y percepciones acerca del pronóstico. Consideraciones finales los conceptos del estado de salud y sus dimensiones relacionadas con la Diabetes Mellitus, interpretadas a la luz del Modelo de Sentido Común, la describieron como una enfermedad con signos físicos y potencial de complicación, incluso asociada con la muerte; sin embargo, también revelaron ignorancia de las causas y consecuencias reales de la enfermedad.

Objective evaluating the health status and its dimensions in patients with Diabetes Mellitus treated in a teaching hospital in the light of the Commonsense Model. Method a descriptive study with qualitative analysis of the data. Participated twenty patients hospitalized and in outpatient care. The data were submitted to content analysis and interpreted according to the concepts of the Commonsense Model. Results the discourses were categorized according to the identity of the disease and its concepts; duration and time for diagnosis and symptoms; causes of the disease and its explanations; consequences and treatment; control and perceptions about prognosis. Final considerations the concepts of health status and its dimensions related to Diabetes Mellitus interpreted in the light of the Commonsense Model described it as a disease with physical signs and potential for complication, even associated with death; however, they also revealed ignorance of the real causes and consequences of the disease.

Métodos Não Farmacológicos para o Manejo da Dor em Oncologia Pediátrica: Evidências da Literatura / Non-pharmacological Methods for Pain Management in Pediatric Oncology: Evidences in Literature / Métodos no Farmacológicos para el Tratamiento del Dolor en Oncología Pediátrica: Evidencia de la Literatura

Introdução: A dor em crianças com doenças malignas relaciona-se à própria doença ou aos procedimentos diagnóstico-terapêuticos. Independentemente da causa, a criança deve ter a sua dor adequadamente tratada. Acredita-se que o controle adequado da dor ocorra em 70% a 90% dos casos, quando se empregam terapias específicas, incluindo-se a combinação de analgésicos e intervenções não farmacológicas. Objetivo: Identificar na literatura especializada métodos não farmacológicos atuais para o manejo da dor em oncologia pediátrica. Método: Revisão integrativa da literatura, com artigos selecionados entre os anos de 2008 e 2018, nas bases de dados Biblioteca Virtual em Saúde (BVS), PubMed, Web of Science e Cumulative Index to Nursing and Allied Health Literature (CINAHL). Analisaram-se 11 artigos, selecionados com base nas recomendações do Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA).Resultados: Três categorias sintetizaram os principais resultados, a saber: dor em oncologia pediátrica e instrumentos de avaliação; benefícios das terapias complementares para o manejo da dor oncológica pediátrica; e efeitos adversos das terapias complementares. Conclusão: Considerando-se a dor como um sintoma debilitante para a população pediátrica em tratamento oncológico, é necessário que as avaliações feitas pelos profissionais da saúde sejam fidedignas às suas características para o manejo adequado. O manejo da dor não se limita apenas às terapias farmacológicas, algumas intervenções levantadas podem complementar a ação dos medicamentos para pacientes, com vistas a minimizar a dor e o sofrimento vivenciado por esses pacientes, além de evitar a tolerância e a sobrecarga do organismo, decorrente do uso excessivo de analgésicos.

Introduction: Pain in children with malignant diseases is related to the disease itself or the diagnostic-therapeutic procedures. Regardless of the cause, the child must have its pain adequately treated. It is believed that adequate pain control occurs in 70% to 90% of the cases, when specific therapies for each patient are employed, including the combination of analgesics and non-pharmacological interventions. Objective: To identify the current non-pharmacological methods for pain management in pediatric oncology in the specialized literature. Method: Integrative literature review, with articles selected between 2008 and 2018 in the Virtual Health Library (VHL), PubMed, Web of Science, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases. 11 articles selected according to the recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) were fully analyzed Results: Three categories summarized the main findings: pain in pediatric oncology and the assessment instruments, benefits of complementary therapies for the management of pediatric cancer pain, and adverse effects of complementary therapies. Conclusion: Considering pain as a debilitating symptom for the pediatric population undergoing cancer treatment, evaluations made by health professionals must be trustworthy to its characteristics for proper management. Pain management is not limited to pharmacological therapies, some interventions proposed can complement the action of medications to minimize the pain and suffering experienced by these patients, in addition to avoiding the body's tolerance and overload, due to the excessive use of painkillers.

Introducción: El dolor en niños con enfermedades malignas está relacionado con la enfermedad o con los procedimientos de diagnóstico y terapéuticos. Independientemente de la causa, el niño debe tener su dolor adecuadamente tratada. El control adecuado del dolor ocurre en 70% a 90% de los casos, cuando se emplean terapias específicas, incluida la combinación de analgésicos e intervenciones no farmacológicas. Objetivo:Identificar los métodos no farmacológicos actuales para el manejo del dolor en oncología pediátrica en la literatura especializada. Método: Revisión integral de la literatura, con artículos seleccionados entre los años 2008 y 2018, en las bases de datos de la Biblioteca Virtual en Salud (BVS), PubMed, Web of Science e Índice Acumulativo de Literatura de Enfermería y Salud Aliada (CINAHL). Se analizaron 11 artículos selecionados según las recomendaciones del Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Resultados: Tres categorías resumieron los principales hallazgos de los estudios seleccionados: dolor en oncología pediátrica y instrumentos de evaluación, beneficios de las terapias complementarias para el tratamiento del dolor pediátrico por cáncer y los efectos adversos de las terapias complementarias. Conclusión: El dolor és un síntoma debilitante para la población pediátrica sometida a tratamiento oncológico, las evaluaciones realizadas por profesionales de la salud deben ser lo confiables para evaluar sus características para el manejo adecuado. El tratamiento del dolor no se limita a las terapias farmacológicas, algunas intervenciones pueden complementar la acción de los medicamentos, para minimizar el dolor y el sufrimiento experimentado por estos pacientes, además de evitar la tolerancia y la sobrecarga del cuerpo, como resultado del uso excesivo de analgésicos.

Convivendo com múltiplos sintomas: a experiência de crianças e adolescentes com condição crônica / Living with multiple symptoms: the experience of children and adolescents with chronic condition / Vivir con múltiples síntomas: la experiencia de niños y adolescentes con condición crónica

Objetivo: compreender como é a experiência das crianças/adolescentes de conviver com sintomas de uma condição crônica. Método: abordagem qualitativa, utilizando como referencial a Teoria Fundamentada nos Dados. Os participantes foram 11 crianças e adolescentes de seis a 18 anos incompletos hospitalizados em um hospital estadual universitário. Como instrumentos de coleta de dados, utilizou-se a entrevista semiestruturada e a técnica "draw, write and tell". As entrevistas foram audiogravadas e transcritas, e a análise seguiu os passos do referencial. Resultados: apreendeu-se a categoria "Tendo que conviver com os sintomas", que engloba cinco subcategorias que apresentam sintomas físicos, emocionais e gerais, a convivência com a multiplicidade de sintomas simultâneos e as consequências de se conviver com eles. Conclusão: a convivência com diversos sintomas leva a limitações. A enfermagem precisa favorecer a expressão das vivencias das crianças/adolescentes, minimizando situações de estresse e melhorar o gerenciamento dos sintomas, através do planejamento de estratégias individualizadas.

Objective: to comprehend children's or adolescents' experiences of living with symptoms of a chronic condition. Method: on a qualitative approach, taking Grounded Theory as a frame of reference and 11 children and adolescents aged 6 to 18 years hospitalized in a state university hospital as participants, data were collected by semi-structured interview using the "draw, write, and tell" technique. The interviews were recorded and transcribed, and then analyzed following the steps of Grounded Theory. Results: analysis identified the category "Having to live with symptoms", which comprised 5 subcategories featuring physical, emotional and general symptoms, the experience of living with multiple simultaneous symptoms, and the consequences of living with them. Conclusion: living with several symptoms entails limitations. Nursing needs to favor children's and adolescents' expressions of their experiences in order to minimize stressful situations and improve symptom management by planning individualized strategies.

Objetivo: comprender las experiencias de niños o adolescentes de vivir con síntomas de una enfermedad crónica. Método: con un enfoque cualitativo, tomando como marco de referencia la Teoría Fundamentada y como participantes a 11 niños y adolescentes de 6 a 18 años hospitalizados en un hospital universitario estatal, los datos se recolectaron mediante entrevista semiestructurada utilizando el método "dibujar, escribir y decir "técnica. Las entrevistas fueron grabadas y transcritas, y luego analizadas siguiendo los pasos de Grounded Theory. Resultados: el análisis identificó la categoría "Tener que vivir con síntomas", que comprendía 5 subcategorías que presentaban síntomas físicos, emocionales y generales, la experiencia de vivir con múltiples síntomas simultáneos y las consecuencias de vivir con ellos. Conclusión: vivir con varios síntomas conlleva limitaciones. La enfermería debe favorecer la expresión de las experiencias de los niños y adolescentes para minimizar las situaciones estresantes y mejorar el manejo de los síntomas mediante la planificación de estrategias individualizadas

The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis.

This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents' life and caused identity crisis and loss of life's purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child's death.

Concepções dos pais acerca da doença oncológica e do tratamento quimioterápico de seus filhos / Concepciones de los padres acerca de la enfermedad oncológica y del tratamiento quimioterápico de sus hijos / Parents' conceptions on their children's oncologic condition and the chemotherapy

Objetivo: analisar as concepções de pais e mães de crianças com câncer em relação à doença e ao tratamento quimioterápico de seus filhos, de acordo com os conceitos do Modelo do Senso Comum (MSC). Método: estudo descritivo, qualitativo. Foram entrevistados 14 pais de pacientes pediátricos em tratamento oncológico. Os dados foram submetidos à análise de conteúdo e analisados segundo o MSC. Resultados: os resultados foram reunidos nas categorias: Identidade da doença: concepções sobre o câncer; Duração: o tempo para o diagnóstico e os sintomas envolvidos; Causas da doença: a busca por explicações; Consequências da doença e do tratamento; Cura ou controle: percepções sobre o prognóstico, baseadas nos domínios do MSC. Conclusão: concepções negativas relacionadas ao câncer e seu tratamento podem gerar incertezas nos pais, comprometer a mobilização de recursos para lidar com os desdobramentos da doença e reduzir as expectativas de um desfecho positivo da experiência.

Objective: analyze the conceptions of fathers and mothers of children with cancer about their children's disease and chemotherapy, in accordance with the concepts of the Commonsense Model (CSM). Method: descriptive, qualitative study. Fourteen parents of pediatric patients in cancer treatment were interviewed. The data were submitted to content analysis and analyzed according to the CSM. Results: the results were joined in the categories: Identity of the disease: conceptions on the cancer; Duration: time for the diagnosis and symptoms involved; Causes of the disease: the search for explanations; Consequences of the disease and the treatment; Cure or control: perceptions on the prognosis, based on the domains of the CSM. Conclusion: negative conceptions on the cancer and its treatment can arouse uncertainties in the parents, compromise the mobilization of resources to cope with the consequences of the disease and reduce the expections that the experience will have a positive outcome.

Objetivo: analizar las concepciones de los padres de niños con cáncer respecto a la enfermedad y al tratamiento quimioterápico de sus hijos, según los conceptos del Modelo del Sentido Común (MSC). Método: estudio descriptivo, cualitativo. Fueron entrevistados 14 padres de niños en tratamiento oncológico. Los datos fueron sometidos al análisis de contenido y analizados según el MSC. Resultados: los resultados fueron reunidos en las categorías: Identidad de la enfermedad: concepciones sobre el cáncer; Duración: el tiempo para el diagnóstico y los síntomas involucrados; Causas de la enfermedad: la búsqueda por explicaciones; Consecuencias de la enfermedad y del tratamiento; Cura o control; percepciones sobre el pronóstico, basadas en los dominios del MSC. Conclusión: concepciones negativas relacionadas al cáncer y su tratamiento pueden generar incertidumbres, comprometer la movilización de recursos para lidiar con los desdoblamientos de la enfermedad y reducir las expectativas de un desfecho positivo de la experiencia.

Atitudes de enfermeiros na administração de quimioterápicos em oncologia pediátrica / Nurses' attitudes in the administration of chemotherapy in pediatric oncology / Actitudes de enfermeros en la administración de quimioterápicos en oncología pediátrica

Objetivo: analisar as atitudes de enfermeiros acerca da administração de antineoplásicos em oncologia pediátrica. Método: estudo descritivo, com análise estatística dos dados. Participaram 20 enfermeiros de um hospital de ensino, localizado na capital paulista, que administravam quimioterapia (QT) a crianças e adolescentes. Em 2016, mediante questionário autoaplicável, foram coletados dados de caracterização dos participantes e sobre suas atividades profissionais na administração de QT, que incluíam principais receios e preocupações, além dos potenciais eventos adversos associados à quimioterapia. Resultados: poucos participantes eram especialistas na área de oncologia ou pediatria; a maioria dos profissionais buscou conhecimento e capacitação por iniciativa própria; os enfermeiros classificaram a atividade como complexa e específica para quem possui interesse na área. Conclusão: todos os enfermeiros consideraram a QT o principal tratamento para o câncer infanto-juvenil. O risco de extravasamento e a falta de dispositivos adequados para administração das drogas foram os fatores que mais preocuparam os participantes.

Objective: to examine nurses' attitudes to the administration of antineoplastics in pediatric oncology. Method: this descriptive study used statistical data analysis. The participants were twenty nurses, who administered chemotherapy to children and adolescents at a teaching hospital in São Paulo City. In 2016, data were collected using a self-report questionnaire on the participants' characteristics and their experience with chemotherapy administration, which included the main chemotherapyrelated fears, concerns and potential adverse events. Results: few participants were specialists in the field of oncology or pediatrics; most sought knowledge and capacity-building on their own initiative; and the nurses classified the activity as complex and specific to those with an interest in the field. Conclusion: all the nurses considered chemotherapy the main treatment for childhood cancer. The factors that most concerned the participants were the risk of extravasation and the lack of appropriate devices for drug administration.

Objetivo: analizar las actitudes de enfermeros acerca de la administración de antineoplásicos en oncología pediátrica. Método: estudio descriptivo, con análisis estadística de los datos. Participaron 20 enfermeros de un hospital de enseñanza, ubicado en la capital de São Paulo, que administraban quimioterapia (QT) a niños y adolescentes. En 2016, a través de cuestionario autoaplicable, se recopilaron datos sobre la caracterización de los participantes y sobre sus actividades profesionales en la administración de quimioterapia que incluían los principales temores, preocupaciones y potenciales eventos adversos asociados a la quimioterapia. Resultados: pocos participantes eran especialistas en el área de oncología o pediatría; la mayoría de los profesionales buscó conocimiento y capacitación por iniciativa propia; los enfermeros clasificaron la actividad como compleja y específica para quien tiene interés en el área. Conclusión: todos los enfermeros consideraron la quimioterapia como el tratamiento principal para el cáncer infantil. El riesgo de extravasación y la falta de dispositivos adecuados para la administración de las drogas fueron los factores que más preocuparon a los participantes.

Transitional care to home in the perspective of parents of children with leukemia. / Transição de cuidados para o domicílio na perspectiva de pais de filhos com leucemia.

OBJECTIVE: To describe the experiences of parents of children and adolescents with leukemia in regards to the transition from hospital care to home. METHOD: A qualitative, descriptive study conducted with nine mothers and two fathers, in a pediatric public hospital. The data were collected through semi-structured interviews, from May 2017 to January 2017, organized in the software Atlas.ti 7® and submitted to inductive content analysis. The Change Theory was used as theoretical framework. RESULTS: The central category was "Returning home: the birth of a new reality", which originated three subcategories: apprehension with the new reality of care; immediate impact of changes; and implementing the guidance plan. CONCLUSION: The transition to the home setting made parents adapt to a new and complex reality of care. Improvements in the planning and systematization of the first hospital discharge are necessary.

Parents' Participation in Managing Their Children's Postoperative Pain at Home: An Integrative Literature Review.

OBJECTIVES: This integrative review aimed to synthesize and critically evaluate the methodological quality of the evidence on parent's participation in managing their children's postoperative pain at home. DESIGN: Integrative review. DATA SOURCES: To locate relevant articles, two reviewers independently searched four electronic databases systematically using predefined inclusion and exclusion criteria. REVIEW/ANALYSIS METHODS: The methodological quality of 23 eligible studies was critically appraised using published evaluation criteria. A qualitative content analysis was then conducted to synthesize findings of the studies to identify thematic trends and factors on the nature of parents' participation and ability to effectively manage their children's pain at home. RESULTS: Methodological quality of most of the 15 surveys was adequate, whereas shortcomings were identified in 6 of the 7 clinical trials and the 1 qualitative study that were included in this review. The three themes identified pertained to parent use of informational sources, postoperative pain medications, and nonpharmacologic pain treatment approaches. Results indicate parents lack the information they need to effectively make use of pharmacologic and nonpharmacologic pain treatment approaches. CONCLUSIONS: There is need to improve communication between parents and health professionals before and after the child's surgery and to provide parents with specific verbal and written instructions and strategies on how to assess and manage their children's pain.

The Theory of Unpleasant Symptoms in Pediatric Oncology Nursing: A Conceptual and Empirical Fit?

Symptom management knowledge is a priority for pediatric oncology nursing research. Theories and models can frame the studies of symptoms experienced during childhood cancer. This article describes and analyzes the middle-range theory, theory of unpleasant symptoms (TOUS), for its conceptual and empirical fit with pediatric oncology nursing based on its current use in adult oncology research and its limited use to date in pediatric oncology. Searches in PubMed and CINAHL databases using the keywords theory of unpleasant symptoms and cancer and covering the time period 2000 to 2017 yielded 103 abstracts for review. Twenty published reports met eligibility criteria for review; only one included pediatric oncology patients. No study to date has tested all the components of the TOUS in pediatrics. The TOUS component of performance appears to be underaddressed across completed studies that instead include a focus on patient-reported quality of life rather than on perceived behavioral or performance indicators concurrent with the subjective symptom reports. Additionally, the influence of family, essential in pediatric oncology, is absent in the majority of studies guided by the TOUS. The TOUS is a structurally complicated framework that would be a conceptual fit for pediatric oncology if family influence and perceived function were included. Studies across this population and guided by the TOUS are needed, although testing all the theorized linkages in the TOUS would likely require a large sample size of patients and, thereby, multisite approaches given that cancer is a rare disease in childhood.