Pain, sleep patterns and health-related quality of life in paediatric patients with cancer.

PURPOSE: To compare sleep and health-related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalisation. METHOD: A prospective comparative study was used to collect data from paediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n = 118; 8-18 years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72 hr. RESULTS: Almost half of the participants (48.3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukaemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. CONCLUSIONS: The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalisation. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.

Children and adolescents hospitalized with chronic conditions: sleep patterns, resilience and quality of life.

OBJECTIVE: To evaluate the sleep pattern of children and adolescents with chronic conditions during hospitalization and correlate it with resilience, quality of life, clinical and sociodemographic data. METHOD: Quantitative, descriptive and cross-sectional study. Data collection took place between May 2022 and January 2023, with children and adolescents with chronic conditions from two hospitals in Rio de Janeiro. The instruments used were the Actigraph, Sandra Prince-Embury's Resilience Scale for Children and Adolescents and the Pediatric Quality of Life Inventory. Data analysis involved descriptive statistics and correlation tests. RESULTS: 40 hospitalized children and adolescents between the ages of nine and 18 took part. The results showed compromised sleep, especially in terms of duration and time awake after sleep onset. Quality of life scores were low and resilience levels were classified as medium to high. Correlations were found between resilience and sleep. In addition, sleep was influenced by diagnosis and treatment. CONCLUSION: Children and adolescents hospitalized with chronic conditions experience significant sleep disturbances and have a low quality of life, but have satisfactory levels of resilience.

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.

Physiological evaluation of premature infants in traditional and humanized weighing: a quasi-experimental study.

OBJECTIVE: To describe and compare the physiological signs presented by premature infants in traditional and humanized weighing. METHOD: A quasi-experimental crossover study, with a sample of 30 premature infants randomly assigned and allocated to the control group (traditional) and the intervention group (humanized), from March 2019 to March 2020, with the collection of general data, vital signs before and after the procedures. Statistical analyses included description of relative and absolute frequencies, measure of central tendency and dispersion. RESULTS: Premature infants showed less increase in heart rate (53.3%) and respiratory rate (43%) in the verification of humanized weighing than in the traditional way, with 83.3% of neonates and 80%, respectively. CONCLUSION: It was observed that the humanized form provided less physiological instability, especially in heart and respiratory rates, making it necessary to encourage discussions about the humanization of care and perform this practice routinely in health units.

[Type 1 diabetes mellitus: evidence from the literature for appropriate management in children's perspective]. / Diabetes mellitus tipo 1: evidências da literatura para seu manejo adequado, na perspectiva de crianças.

The objective of this study was to identify the evidence available in the literature that address, for children's perspective, factors that are relevant for an appropriate management of type 1 diabetes mellitus. An integrative review was performed on the PubMed, CINAHL, LILACS, CUIDEN and PsycINFO databases, covering the period from 1998 to 2008 and using the following keywords: type 1 diabetes mellitus, child, prevention and control, triggering factors, emergencies, self care, learning and health education. Nineteen of the surveyed articles were selected, and their analysis revealed the following categories: living with diabetes; self care and glucose profile; the actions of family, friends and health professionals; and school. The evidence show that children appreciate the support they receive from their relatives, which have a direct relationship with being prepared for self care. Other members apart from their network are also valued. Areas that deserve attention are the school, the personal experience of each child, and health education.

Perceptions of adolescents with cancer undergoing palliative care about their illness process.

OBJECTIVE: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process. METHOD: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships. RESULTS: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents. FINAL CONSIDERATIONS: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.

Educational practices for families of children and adolescents using a permanent venous catheter.

OBJECTIVES: to identify, in the scientific literature, the educational practices performed by nurses with the families of children and adolescents using long-term venous catheters, concerning home care. METHODS: integrative review in LILACS, PubMed, SCOPUS, Web of Science and CINAHL databases, from August to September 2018. RESULTS: we analyzed eight articles that met the inclusion criteria. The results showed that all studies are international, mostly North American and with low level of evidence. The educational practices found were home visits, production of printed educational materials, use of mannequins for simulation, creation of an educational video, and combined educational practices. Final Considerations: the care provided by families at home in the countries studied is more complex than in Brazil, and the conclusion is that Brazilian studies need to advance in publications related to this area.

Effectiveness of hospital clowns for symptom management in paediatrics: systematic review of randomised and non-randomised controlled trials.

OBJECTIVE: To evaluate evidence from randomised controlled trials and non-randomised controlled trials on the effectiveness of hospital clowns for a range of symptom clusters in children and adolescents admitted to hospital with acute and chronic conditions. DESIGN: Systematic review of randomised and non-randomised controlled trials. DATA SOURCES: Medline, ISI of Knowledge, Cochrane Central Register of Controlled Trials, Science Direct, Scopus, American Psychological Association PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and Latin American and Caribbean Health Sciences Literature. STUDY SELECTION: Randomised and non-randomised controlled trials were peer reviewed using the following eligibility criteria: children and adolescents who were admitted to hospital for acute conditions or chronic disorders, studies comparing use of hospital clowns with standard care, and studies evaluating the effect of hospital clowns on symptom management of inpatient children and adolescents as a primary outcome. DATA EXTRACTION AND SYNTHESIS: Two investigators independently screened studies, extracted data, and appraised the risk of bias. Methodological appraisal was assessed by two investigators independently using the Jadad scale, the revised Cochrane risk-of-bias tool for randomised controlled trials (RoB 2), and the risk of bias in non-randomised studies (ROBINS-I) tool for non-randomised controlled trials. RESULTS: 24 studies (n=1612) met the inclusion criteria for data extraction and analysis. Most studies were randomised controlled trials (n=13). Anxiety was the most frequently analysed symptom (n=13), followed by pain (n=9), psychological and emotional responses and perceived wellbeing (n=4), stress (n=4), cancer related fatigue (n=3), and crying (n=2). Five studies used biomarkers, mainly cortisol, to assess stress or fatigue outcome following hospital clowns. Most of the randomised controlled trials (n=11; 85%) were rated as showing some concerns, and two trials were rated with a high risk of bias. Most non-randomised controlled trials (n=6; 55%) were rated with a moderate risk of bias according to ROBINS-I tool. Studies showed that children and adolescents who were in the presence of hospital clowns, either with or without a parent present, reported significantly less anxiety during a range of medical procedures, as well as improved psychological adjustment (P<0.05). Three studies that evaluated chronic conditions showed favourable results for the intervention of hospital clowns with significant reduction in stress, fatigue, pain, and distress (P<0.05). CONCLUSIONS: These findings suggest that the presence of hospital clowns during medical procedures, induction of anaesthesia in the preoperative room, and as part of routine care for chronic conditions might be a beneficial strategy to manage some symptom clusters. Furthermore, hospital clowns might help improve psychological wellbeing in admitted children and adolescents with acute and chronic disorders, compared with those who received only standard care. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018107099.

Children and adolescents hospitalized with chronic conditions: sleep patterns, resilience and quality of life / Niños y adolescentes hospitalizados con enfermedades crónicas: patrón de sueño, resiliencia y calidad de vida / Crianças e adolescentes hospitalizados com condições crônicas: padrão de sono, resiliência e qualidade de vida

ABSTRACT Objective: To evaluate the sleep pattern of children and adolescents with chronic conditions during hospitalization and correlate it with resilience, quality of life, clinical and sociodemographic data. Method: Quantitative, descriptive and cross-sectional study. Data collection took place between May 2022 and January 2023, with children and adolescents with chronic conditions from two hospitals in Rio de Janeiro. The instruments used were the Actigraph, Sandra Prince-Embury's Resilience Scale for Children and Adolescents and the Pediatric Quality of Life Inventory. Data analysis involved descriptive statistics and correlation tests. Results: 40 hospitalized children and adolescents between the ages of nine and 18 took part. The results showed compromised sleep, especially in terms of duration and time awake after sleep onset. Quality of life scores were low and resilience levels were classified as medium to high. Correlations were found between resilience and sleep. In addition, sleep was influenced by diagnosis and treatment. Conclusion: Children and adolescents hospitalized with chronic conditions experience significant sleep disturbances and have a low quality of life, but have satisfactory levels of resilience.

RESUMEN Objetivo: Evaluar el patrón de sueño de niños y adolescentes con enfermedades crónicas durante la hospitalización y correlacionarlo con la resiliencia, la calidad de vida y los datos clínicos y sociodemográficos. Método: Estudio cuantitativo, descriptivo y transversal. La recolección de datos se realizó entre mayo de 2022 y enero de 2023, con niños y adolescentes con condiciones crónicas de dos hospitales de Río de Janeiro. Los instrumentos utilizados fueron el Actigraph, la Escala de Resiliencia para Niños y Adolescentes de Sandra Prince-Embury y el Inventario Pediátrico de Calidad de Vida. El análisis de los datos incluyó estadística descriptiva y pruebas de correlación. Resultados: Participaron 40 niños y adolescentes hospitalizados de entre 9 y 18 años. Los resultados mostraron un sueño comprometido, especialmente en términos de duración y tiempo despierto tras el inicio del sueño. Las puntuaciones de calidad de vida fueron bajas y los niveles de resiliencia se clasificaron entre medios y altos. Se hallaron correlaciones entre la resiliencia y el sueño. Además, el diagnóstico y el tratamiento influyeron en el sueño. Conclusión: Los niños y adolescentes hospitalizados con enfermedades crónicas experimentan alteraciones significativas del sueño y tienen una baja calidad de vida, pero presentan niveles satisfactorios de resiliencia.

RESUMO Objetivo: Avaliar o padrão de sono de crianças e adolescentes com condições crônicas durante a hospitalização e correlacioná-lo com resiliência, qualidade de vida, dados clínicos e sociodemográficos. Método: Estudo quantitativo, descrito e transversal. A coleta de dados ocorreu entre maio de 2022 e janeiro de 2023, com crianças e adolescentes com condições crônicas de dois hospitais do Rio de Janeiro. Os instrumentos utilizados foram o Actigraph, Escala de Resiliência para Crianças e Adolescentes de Sandra Prince-Embury e Inventário Pediátrico de Qualidade de Vida. A análise dos dados envolveu estatística descritiva e teste de correlação. Resultados: Participaram 40 crianças e adolescentes hospitalizados entre nove e 18 anos. Os resultados mostraram sono comprometido, principalmente nos quesitos duração e tempo acordado após início do sono. Os escores para qualidade de vida foram baixos e níveis de resiliência classificados entre médio e alto. Foram encontradas correlações entre resiliência e sono. Além disso, o sono foi influenciado pelo diagnóstico e pelo tratamento. Conclusão: Crianças e adolescentes hospitalizados com condições crônicas vivenciam importantes distúrbios do sono e possuem baixa qualidade de vida, mas apresentam níveis satisfatórios de resiliência.

Frequency, Severity, and Distress Associated With Physical and Psychosocial Symptoms at Home in Children and Adolescents With Cancer.

Malignancy- and cancer-related treatments lead to multiple symptoms. Although treatments focus on cure, few research studies have examined the symptoms that accompany these aggressive and complicated treatments. The purpose of the study was to evaluate the symptoms experienced by children at home. Children (n = 25) and adolescents (n = 33) diagnosed with cancer completed the Memorial Symptoms Assessment Scale during the 5 days at home after discharge from the hospital. The most frequent physical symptoms were fatigue (52.1%), nausea (50.7%), lack of appetite (43.7%), and pain (42.3%). The most frequent psychological symptoms were difficulty sleeping (21.1%), worrying (18.3%), feeling sad (18.3%), and feeling nervous (16.9%). Significant differences were found in the overall physical and psychosocial symptoms and Global Distress Index in patients with and without pain, fatigue, and nausea. Results indicated that physical and psychosocial symptoms and Global Distress Index increased as severity of pain, nausea, and fatigue increased. Children and adolescents were experiencing many symptoms at home but were often not reporting them.

Systematic review protocol examining the effectiveness of hospital clowns for symptom cluster management in paediatrics.

INTRODUCTION: Clown intervention may playing an important complementary role in paediatric care and recovery. However, data on its utility for symptom cluster management of hospitalised children and adolescents in acute and chronic disorders are yet to be critically evaluated. As clinicians strive to minimise the psychological burden during hospitalisation, it is important that they are aware of the scientific evidences available regarding clown intervention for symptom management. We aim to provide quality evidence for the effectiveness of clown intervention on symptom cluster management in paediatric inpatients, both in acute and chronic conditions. METHODS AND ANALYSIS: A systematic review of randomised controlled trials (RCTs) and non-randomised controlled trials (NRCTs) will be conducted. MEDLINE, Web of Science, Cochrane Library, Science Direct, PsycINFO, CINAHL, LILACS and SciELO databases will be searched from January 2000 to December 2018. Primary outcomes will include measures related with the effect of clown intervention on symptom cluster of paediatric inpatients (anxiety, depression, pain, fatigue, stress and psychological, emotional responses and perceived well-being). Study selection will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, and the methodological appraisal of the studies will be assessed by the Jadad Scale as well as Cochrane Risk-of-Bias Tool for RCTs, and Risk-of-Bias In Non-Randomized Studies Tool for NRCTs. A narrative synthesis will be conducted for all included studies. Also, if sufficient data are available, a meta-analysis will be conducted. The effect sizes will be generated using Hedges' g score for both fixed and random effect models. I 2 statistics will be used to assess heterogeneity and identify their potential sources. ETHICS AND DISSEMINATION: As it will be a systematic review, without human beings involvement, there will be no requirement for ethical approval. Findings will be disseminated widely through peer-reviewed publication and in various media, for example, conferences, congresses or symposia. TRIAL REGISTRATION NUMBER: CRD42018107099.

The Effect of Music on the Spirituality of Patients: A Systematic Review.

PURPOSE: Although some studies have suggested that music can positively affect physical and psychological variables, few have evaluated its effects on spirituality. This study aimed to evaluate the effects of musical interventions on the spirituality of patients, regardless of diagnoses. METHOD: This was a systematic literature review that followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations conducted through a relevant search of terms in six databases (PubMed, Web of Science, CINAHL, PsycINFO, ScienceDirect, and LILACS) without temporal delimitation. Experimental or quasi-experimental studies were included, involving participants regardless of diagnoses, to assess the effect of music on spirituality, either through musical intervention as music medicine or through music therapy. The methodological quality of included studies was evaluated using the Physiotherapy Evidence Database scale. RESULTS: A total of 147 studies were identified; 7 met the inclusion criteria. Five studies were randomized controlled trials involving six music therapists leading the musical intervention with the active participation of patients. The interventions used were heterogeneous. Three studies were associated with improved spirituality after the intervention. Four studies used measurements to evaluate spiritual well-being. CONCLUSION: This review did not allow ascertaining the positive impact of music intervention on spirituality in patients, which motivates further research.

Interventions minimizing fatigue in children/adolescents with cancer: An integrative review.

Fatigue is among the most common, debilitating, and distressing symptoms associated with chronic condition in pediatric population. The purpose of this study was to identify non-pharmacological fatigue interventions in children and adolescents with cancer. For this, we carried out an integrative review of the literature from January 2000 to December 2016. A comprehensive search of four databases was conducted: Cumulative Index to Nursing and Allied Health Literature, Psychology Information, Medline via PubMed, and Web of Science. Randomized controlled trial, quasi-experimental, case-control and cohort studies were included in this review. Thirteen relevant studies were included for analysis. Seven papers reported positive outcomes for exercise, exercise plus leisure activities, healing touch and acupressure. In another six papers using exercise, exercise plus psychological intervention and massage, no effectiveness was found. Effective management of fatigue in children and adolescents is important but research in this area is limited, so the results of this review should be interpreted cautiously. Future researchers are encouraged to test the effective interventions in homogenous cancer populations and in other groups where fatigue is a common concern.

Therapeutic play toy for children with totally implanted central venous catheters: nurses' perception / Juguete terapéutico para niños con catéteres venosos centrales totalmente implantados: la percepción de los enfermeros / Brinquedo terapêutico para crianças com cateter venoso central totalmente implantado: percepção dos enfermeiros

ABSTRACT Objective: to describe nurses' perception about an Instructional Therapeutic Play toy for children with totally implanted central venous catheters. Method: a qualitative, descriptive and exploratory study carried out in a public hospital from Rio de Janeiro with 12 nurses who work in the care of children with totally implanted central venous catheters. The data were collected through semi-structured interviews from March to May 2019 and subjected to thematic analysis. Results: two thematic units that dealt with the necessary adaptations in the Therapeutic Play toy regarding materials, gender, race, age and catheter implantation site in the body emerged. Conclusion: it was possible to understand the aspects that permeate the Therapeutic Play toy scenario and the possibilities and limitations that interfere with its use in children's care. In this way, the adaptations enhance the Advanced Pediatric Nursing Practice, as playing is a children's need.

RESUMEN Objetivo: describir la percepción de los enfermeros sobre un juguete terapéutico instructivo para niños con catéteres venosos centrales totalmente implantados. Método: estudio cualitativo, descriptivo y exploratorio realizado en un hospital público de Rio de Janeiro con 12 enfermeros que trabajan en la asistencia provista a niños con catéteres venosos centrales totalmente implantados. Los datos se recolectaron por medio de entrevistas semiestructurada entre marzo y mayo de 2019 y fueron sometidos a análisis temático. Resultados: surgieron dos unidades temáticas que tratan sobre las adaptaciones necesarias en el juguete terapéutico en relación con los materiales, el sexo, la raza, la edad y el sitio en el que se implanta el catéter en el cuerpo. Conclusión: fue posible comprender los diversos aspectos intrínsecos al escenario de los juguetes terapéuticos y las posibilidades y limitaciones que interfieren en su utilización al atender a los niños. De esta manera, las adaptaciones potencian la práctica avanzada de Enfermería Pediátrica, ya que jugar es una necesidad inherente de los niños.

RESUMO Objetivo: descrever a percepção dos enfermeiros sobre um brinquedo terapêutico instrucional para crianças com cateter venoso central totalmente implantado. Método: estudo qualitativo, descritivo, exploratório, realizado em um hospital público do Rio de Janeiro com 12 enfermeiros que trabalham na assistência à criança em uso de cateter venoso central totalmente implantado. Os dados foram coletados por meio de uma entrevista semiestruturada, nos meses de março e maio de 2019, e submetidos à análise temática. Resultados: emergiram duas unidades temáticas que versaram sobre as adaptações necessárias no brinquedo terapêutico quanto aos materiais, gênero, raça, idade e o local de implantação do cateter no corpo. Conclusão: pôde-se compreender as vertentes que permeiam o cenário do brinquedo terapêutico e as possibilidades e limitações que interferem em sua utilização na assistência à criança. Dessa forma, as adaptações potencializam a prática avançada de enfermagem pediátrica, uma vez que o brincar é uma necessidade da criança.

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(AU)

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(AU)

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(AU)

Uso da fotografia em pesquisas com crianças e adolescentes com condições crônicas: revisão integrativa / Uso de la fotografía en estudios con infantes y adolescentes con condiciones crónicas: revisión integradora / Use of photography in research with children and adolescents with chronic conditions: an integrative review

Resumo Objetivo Identificar estudos que utilizaram as técnicas de Foto-Elicitação e Photovoice como estratégia para coleta de dados com crianças e adolescentes com condições crônicas. Métodos Revisão integrativa da literatura, efetuada nas bases de dados Web of Science, CINAHL, MEDLINE, PsycINFO e LILACS, com busca de artigos publicados em inglês, português e espanhol, entre os anos 2010 e 2021. As buscas foram conduzidas entre os meses de fevereiro e abril de 2022. Os dados foram analisados de forma descritiva e organizados em categorias. Resultados Foram incluídos 28 artigos e, a partir do processo analítico, construíram-se as seguintes categorias: 1 - Vantagens do uso da Foto-Elicitação e do Photovoice; e 2 - Desafios no uso dessas técnicas. Conclusão A literatura é convergente ao considerar que a abordagem visual se configura como uma ferramenta facilitadora da comunicação das experiências de crianças e adolescentes com condições crônicas, ainda que possa apresentar alguns desafios na sua aplicabilidade.

Resumen Objetivo Identificar estudios que utilizaron las técnicas de foto-elicitación y fotovoz como estrategia de recopilación de datos con infantes y adolescentes con condiciones crónicas. Métodos Revisión integradora de la literatura, realizada en las bases de datos Web of Science, CINAHL, MEDLINE, PsycINFO y LILACS, con búsqueda de artículos publicados en inglés, portugués y español, entre los años 2010 y 2021. Las búsquedas se llevaron a cabo entre los meses de febrero y abril de 2022. Los datos se analizaron de forma descriptiva y se organizaron en categorías. Resultados Se incluyeron 28 artículos y, a partir del proceso analítico, se crearon las siguientes categorías: 1) Ventajas del uso de la foto-elicitación y de la fotovoz, 2) Desafíos del uso de estas técnicas. Conclusión La literatura es convergente al considerar que el enfoque visual se presenta como una herramienta facilitadora de la comunicación de las experiencias de infantes y adolescentes con condiciones crónicas, aunque puede presentar algunos desafíos para su aplicabilidad.

Abstract Objective To identify studies that used Photo-Elicitation and Photovoice techniques as a strategy for data collection with children and adolescents with chronic conditions. Methods This is an integrative literature review, carried out in the Web of Science, CINAHL, MEDLINE, PsycINFO and LILACS databases, with a search for articles published in English, Portuguese and Spanish, between 2010 and 2021. The searches were conducted between February and April 2022. Data were analyzed descriptively and organized into categories. Results A total of 28 articles were included and, based on the analytical process, the following categories were constructed: Advantages of using Photo-Elicitation and Photovoice; and Challenges in using these techniques. Conclusion The literature is converging when considering that the visual approach is configured as a tool that facilitates the communication of the experiences of children and adolescents with chronic conditions, although it may present some challenges in its applicability.

Fatigue and health related quality of life in children and adolescents with cancer.

PURPOSE: The study examined the different dimensions of fatigue (general, sleep/rest, cognitive), health related quality of life (HRQL) (physical, emotional, cognitive, social), and the relationships between fatigue and HRQL in hospitalized children and adolescents with cancer in Brazil. METHOD: Participants were recruited from a pediatric oncology inpatient unit in a comprehensive cancer care hospital in southeast Brazil. They completed the PedsQL Multidimensional Fatigue Scale and the PedsQL Inventory of Quality of Life (Generic and Cancer module) once during hospitalization. RESULTS: The majority (66.7%) of the participants (n = 38; mean age 12.1 ± 2.9 years) had total fatigue scores < 75 on 0 to 100 scale; with the mean total fatigue score of 63.8 ± 18.5. The majority (72.2% generic; 83.3% cancer modules) had total PedsQL scores < 75 on 0 to 100 scale. The mean PedsQL score on generic module (61.1 ± 17.0) was similar to the mean PedsQL score cancer module (59.1 ± 16.7). Significant correlations were found between total fatigue and quality of life generic (r = 0.63, p = 0.000) and cancer module (r = 0.74, p = 0.000). CONCLUSIONS: The study is the first to report fatigue and health related quality of life in hospitalized children and adolescents with cancer in Brazil. Similar to experiences of other children in the world, our findings indicate that children and adolescents with cancer had problems with fatigue that were associated with low HRQL. Future studies are recommended to examine interventions (exercise, leisurely activities) that may alleviate fatigue and improve HRQL in pediatric patients with cancer.

A compreensão da enfermagem acerca do cuidado compartilhado à criança com condição crônica hospitalizada / Nursing's understanding of shared care for hospitalized children with a chronic condition / La comprensión de la enfermería sobre el cuidado compartido a niños hospitalizados con enfermedades crónicas

Objetivo: compreender a visão do profissional de enfermagem sobre o cuidado compartilhado entre equipe de enfermagem e o familiar da criança com condição crônica. Método: estudo qualitativo, descritivo, exploratório realizado numa enfermaria de pediatria de um Hospital Estadual Universitário do Rio de Janeiro, com 23 profissionais de enfermagem, sendo 5 enfermeiras e 18 técnicas de enfermagem. Os dados foram analisados com base na técnica de análise de conteúdo temática segundo Bardin. Resultados: apreenderam-se três categorias: Desafios na construção do cuidado compartilhado; Maneiras de promover o cuidado compartilhado e Benefícios do cuidado compartilhado. Evidenciam aspectos positivos e que precisam ser melhorados para que o cuidado compartilhado seja efetivo e maneiras de realizá-lo. Conclusão: os resultados deste estudo evidenciaram aspectos positivos e desafios na relação profissional-familiar para efetivo cuidado compartilhado, estes poderão contribuir para assistência da enfermagem de qualidade, evidenciando o aspecto educativo do cuidado, favorecendo a interação entre profissional e familiares.

Objective: to understand the Nursing profession's view of care shared between nursing teams and relatives/caregivers of children with a chronic condition. Method: this qualitative, descriptive, exploratory study involved 23 nursing personnel (5 nurses and 18 nursing technicians) in a pediatric unit of a state university hospital. Data were analyzed using Bardin thematic content analysis. Results: three categories were identified: Challenges in constructing shared care; Ways to promote shared care; and Benefits of shared care. They highlight both positive aspects to be improved so that shared care is effective and ways to achieve that. Conclusion: this study found positive aspects and challenges in the relationship between families and health personnel with a view to effective shared care. These can contribute to quality nursing care, highlight the educational aspect of care and favor interaction between health personnel and families.

Objetivo: comprender la perspectiva del profesional de enfermería acerca del cuidado compartido entre el equipo de enfermería y el familiar del niño con enfermedad crónica. Método: estudio cualitativo, descriptivo, exploratorio, realizado en una sala de enfermería pediátrica de un Hospital Universitario del Estado en Río de Janeiro, junto a 23 profesionales de enfermería: 5 enfermeros y 18 técnicos de enfermería. Los datos se analizaron mediante la técnica de análisis de contenido temático según Bardin. Resultados: se abordaron tres categorías: Desafíos en la construcción del cuidado compartido; Formas de promover la atención compartida y Beneficios de la atención compartida. Se presentan aspectos positivos que, sin embargo, necesitan mejoras para que el cuidado compartido sea eficaz y se muestran formas de hacerlo. Conclusión: los resultados de este estudio mostraron aspectos positivos y desafíos en la relación profesional-familia para un cuidado compartido eficaz, que pueden contribuir a una atención de enfermería de calidad, destacando el aspecto educativo del cuidado, favoreciendo la interacción entre el profesional y los familiares.

Visão de familiares sobre o cuidado compartilhado da criança com condição crônica hospitalizada / Visión familiar sobre el cuidado compartido de niños con condición crónica hospitalizada / Family view on the shared care of hospitalized children with chronic condition

Objetivo: compreender a visão dos familiares de criança com condição crônica hospitalizada sobre o cuidado compartilhado com a equipe de enfermagem. Método: estudo transversal, realizado com 231 universitários da área da saúde entre os meses de setembro e outubro de 2020. Aplicou-se o Maslach Burnout Inventory/ Student Survey para avaliar a Síndrome de Burnout e associou-se um questionário para levantamento das variáveis sociodemográficas e acadêmicas. A associação entre variáveis categóricas foi avaliada por meio dos testes Qui-quadrado e Exato de Fisher. Considerou-se nível de significância de 5%. Resultados: identificou-se quatro categorias: Buscando uma definição para cuidado compartilhado; Ajudando e aprendendo durante a hospitalização; Exemplificando as formas de realizar cuidado compartilhado no ambiente hospitalar; Sensações vivenciadas pelos cuidados compartilhados. Considerações Finais: na visão dos cuidadores de crianças em condição crônica, o compartilhamento do cuidado nas hospitalizações é percebido como ajuda dos acompanhantes aos profissionais, e não como parte do cuidado. Foram identificados momentos de troca e aprendizado, porém o cuidado pareceu ser mais compartimentado do que compartilhado.

Objetivo: comprender la visión de los familiares de niños con enfermedades crónicas hospitalizadas sobre la atención compartida con el equipo de enfermería. Método: estudio cualitativo, exploratorio y descriptivo, realizado con diez familiares de niños con enfermedades crónicas hospitalizados en las salas intensivas clínicas, quirúrgicas y pediátricas de un Hospital Universitario de Río de Janeiro, Brasil. La recolección de datos se produjo mediante la aplicación de entrevistas semiestructuradas. Los datos fueron analizados por análisis de contenido. Resultados: se identificaron cuatro categorías: Búsqueda de una definición de atención compartida; Ayudar y aprender durante la hospitalización; Ejemplificar las formas de realizar la atención compartida en el ámbito hospitalario; Sensaciones experimentadas por el cuidado compartido. Consideraciones finales: en opinión de los cuidadores de niños en condiciones crónicas, el reparto de cuidados en las hospitalizaciones se percibe como la ayuda de los acompañantes a los profesionales, y no como parte de los cuidados. Se identificaron momentos de intercambio y aprendizaje, pero el cuidado parecía estar más compartimentado que compartido.

Objective: to understand the view of family members of children with chronic hospitalized conditions about shared care with the nursing team. Method: qualitative, exploratory and descriptive study, conducted with ten relatives of children with chronic conditions hospitalized in the clinical, surgical and pediatric intensive wards of a University Hospital in Rio de Janeiro, Brazil. Data collection occurred through the application of semi-structured interviews. The data were analyzed by content analysis. Results: four categories were identified: Seeking a definition for shared care; Helping and learning during hospitalization; Exemplifying the ways to perform shared care in the hospital environment; Sensations experienced by shared care. Final considerations: in the view of caregivers of children in chronic conditions, the sharing of care in hospitalizations is perceived as the help of companions to professionals, and not as part of care. Moments of exchange and learning were identified, but care seemed to be more compartmentalized than shared.

Temas para Construção de Material Educativo sobre Alimentação da Criança com Leucemia / Themes for the Construction of Educational Material about Feeding Children with Leukemia / Temas para la Construcción de Material Educativo sobre Alimentación de Niños con Leucemia

Introdução: A alimentação é um tema que gera muitas dúvidas nos familiares de crianças com leucemia, e os materiais educativos são fundamentais para preparar e orientar esses cuidadores para o cuidado domiciliar. Objetivo: Identificar os temas sobre a alimentação da criança com leucemia sob a ótica de enfermeiros e familiares cuidadores para construção de material educativo. Método: Pesquisa qualitativa participativa realizada em 2018 por meio de círculos de discussão, em um hospital oncológico no Rio de Janeiro-RJ, com seis familiares e seis enfermeiros, após aprovação dos Comitês de Ética em Pesquisa. Os dados foram analisados pelo método da análise de conteúdo na modalidade temático-categorial. Resultados: As falas dos familiares e enfermeiros subsidiaram o conteúdo para construção de materiais educativos, como cartilha, apontando a necessidade de orientações sobre alimentação oferecida à criança, destacando os seguintes temas: imunidade normal; neutropenia; náuseas e vômitos; mucosite; disgeusia; constipação; diarreia; higiene e forma de preparo dos alimentos. Conclusão: A construção de material educativo para familiares de crianças com leucemia poderá contribuir para sanar as dúvidas dos familiares, uma vez que permitirá aos enfermeiros orientá-los durante a internação de sua criança, servindo posteriormente como um guia para o desenvolvimento dos cuidados de sua criança no domicílio

Introduction: Food is a theme that raises many doubts in family members of children with leukemia and educational materials are essential to prepare and guide these caregivers for home care. Objective: To identify the topics on feeding children with leukemia from the perspective of nurses and family caregivers for the construction of educational material. Method: Qualitative participatory research conducted in 2018 through discussion circles, in an oncology hospital in Rio de Janeiro-RJ, with 6 family members and 6 nurses, after approval by the Institutional Review Board. The data were analyzed using the content analysis method in the thematic-categorical modality. Results: The narratives of family members and nurses were utilized to elaborate the content for the construction of educational materials such as primes, pointing out the need for guidance on food offered to the child, focusing on the following themes: normal immunity; neutropenia; nausea and vomiting; mucositis; dysgeusia; constipation; diarrhea; hygiene and food preparation. Conclusion: The construction of educational material for family members of children with leukemia may help to respond to their doubts, since it will enable nurses to guide them during the hospitalization, and later working as a guide for the development of their child's home care

Introducción: La alimentación es un tema que genera muchas dudas en los familiares de los niños con leucemia y los materiales educativos son fundamentales para preparar y orientar a estos cuidadores para el cuidado domiciliario. Objetivo: Identificar los temas de alimentación infantil con leucemia desde la perspectiva de enfermeras y cuidadores familiares para la construcción de material educativo. Método: Investigación cualitativa participativa realizada en 2018 a través de círculos de discusión, en un hospital oncológico de Rio de Janeiro-RJ, con seis familiares y seis enfermeros, previa aprobación de los Comités de Ética en Investigación. Los datos fueron analizados mediante el método de análisis de contenido en la modalidad temática-categórica. Resultados: Los discursos de familiares y enfermeras fueron utilizados para elaborar contenido para la construcción de materiales educativos como el cuadernillo, señalando la necesidad de orientación sobre la alimentación ofrecida al niño, centrándose en los siguientes temas: inmunidad normal; neutropenia náuseas y vómitos; mucositis; disgeusia; constipación; diarrea; higiene y forma de preparación de los alimentos. Conclusión: La construcción de material educativo para familiares de niños con leucemia puede ayudar a resolver las dudas, ya que permitirá al enfermero orientarlos durante la hospitalización de su hijo, sirviendo posteriormente como guía para el desarrollo del cuidado en el domicilio