"God gives me hope!": Hospitalized children's perception of the influence of religion in coping with chronic illness.

PURPOSE: The mechanism of the impact of religion on health is still unclear, especially in children and adolescents with chronic illness who live in religious contexts. This study aimed to understand the influence of religion on coping with chronic diseases from the perspective of hospitalized children and adolescents diagnosed with cancer, type 1 diabetes mellitus and cystic fibrosis. DESIGN AND METHODS: Qualitative descriptive research used photo-elicitation interviews with 35 Brazilian children and adolescents with cancer, type 1 diabetes mellitus and cystic fibrosis, aged between 7 and 17 years old. A thematic analysis approach was used to analyze qualitative data. RESULTS: Participants were diagnosed with cystic fibrosis (14.3%), cancer (57.1%), and type 1 diabetes mellitus (28.6%) and 82.9% had a religious affiliation. Three themes were constructed: finding strength and support in the relationship with the divine, religion as an important source of meaning, and religious practice as a promoter of well-being. These themes demonstrate that children and adolescents themselves perceived their illness as a journey through which their faith grew. CONCLUSIONS: This research shows the influence of religion on the positive coping of chronic illness, being a source of strength and support from the relationship with the divine, as well as offering a source of meaning, purpose and well-being based on religious practices. PRACTICE IMPLICATIONS: This study supports clinical practice, based on the recognition of the patient as a religious and spiritualized person who has spiritual beliefs and needs that are capable of influencing treatment.

Knowledge and experience of Primary Education teachers regarding childhood asthma: mixed study.

OBJECTIVE: To analyze the knowledge of Primary Education teachers regarding asthma and learn about their experiences with the exacerbation of symptoms at school. METHOD: Sequential explanatory mixed study. In the quantitative stage, the Newcastle Asthma Knowledge Questionnaire and the characterization instrument were applied. Data analyzed by descriptive and inferential statistics. The production of qualitative data occurred from written statements analyzed using the deductive content analysis method. RESULTS: Two hundred and seven teachers, mostly women (92%) and working in public schools (82%). As for knowledge, 132 (63.8%) had unsatisfactory performance. The questions with the lowest rates of correct answers were about medications used regularly and during the attacks. Teachers with higher scores had less time in the occupation (p = 0.017) and had been diagnosed with asthma (p = 0.006). In the qualitative stage, 35 teachers participated and the statements corroborated the quantitative findings, especially in relation to the knowledge gap and feeling of greater safety among asthmatic teachers. CONCLUSION: Teachers showed insufficient knowledge and reported fear and unpreparedness in the face of the situation.

Parent and staff perceptions of patient and family-centred care in a Brazilian paediatric's hospital: Quantitative study.

BACKGROUND: Patient and family-centred care (PFCC) is a healthcare model has been acknowledged as the central pillar in the paediatric health care that recognizes the family's role and experience in the health care delivery. AIMS: This study investigated and compared the perception of PFCC from the perspective of staff and parents of hospitalized children and adolescents. METHODS: A quantitative and comparative cross-sectional survey was used in a convenience sample of 105 staff and 116 parents, who completed the Brazilian versions of the Perceptions of Family Centred Care-Parent and Staff questionnaires, with additional questions on their characteristics. Descriptive and analytical statistics were used, as well as the Kruskal-Wallis and Mann-Whitney tests and Spearman's correlation coefficient. RESULTS: Both parents and staff responses were positive and parents had significantly higher scores for 19 of the 20 items (p < 0.001). The item related to parental participation did not show any significant difference between the groups. CONCLUSION: The positive perception of PFCC for both groups is consistent with recommendations for expanded care that includes patient and family in healthcare settings. Parents' perception was more positive than staff perceptions of their delivery of family-centred care in hospital. The lowest score for the parent support subscale in both groups requires investigation.

Knowledge and experience of Primary Education teachers regarding childhood asthma: mixed study / Conocimiento y experiencia de docentes de Educación Básica sobre el asma infantil: estudio mixto / Conhecimento e vivência de professores da Educação Básica com relação à asma na infância: estudo misto

ABSTRACT Objective: To analyze the knowledge of Primary Education teachers regarding asthma and learn about their experiences with the exacerbation of symptoms at school. Method: Sequential explanatory mixed study. In the quantitative stage, the Newcastle Asthma Knowledge Questionnaire and the characterization instrument were applied. Data analyzed by descriptive and inferential statistics. The production of qualitative data occurred from written statements analyzed using the deductive content analysis method. Results: Two hundred and seven teachers, mostly women (92%) and working in public schools (82%). As for knowledge, 132 (63.8%) had unsatisfactory performance. The questions with the lowest rates of correct answers were about medications used regularly and during the attacks. Teachers with higher scores had less time in the occupation (p = 0.017) and had been diagnosed with asthma (p = 0.006). In the qualitative stage, 35 teachers participated and the statements corroborated the quantitative findings, especially in relation to the knowledge gap and feeling of greater safety among asthmatic teachers. Conclusion: Teachers showed insufficient knowledge and reported fear and unpreparedness in the face of the situation.

RESUMEN Objetivo: Analizar el conocimiento de docentes de Educación Básica sobre el asma y conocer sus experiencias con la agudización de los síntomas en la escuela. Método: Estudio mixto del tipo explicativo secuencial. En la etapa cuantitativa, el Newcastle Asthma Knowledge Questionnaire y el instrumento de caracterización fueron aplicados. Datos fueron analizados por estadística descriptiva e inferencial. La producción de datos cualitativos se basó en declaraciones escritas analizadas utilizando el método de análisis de contenido deductivo. Resultados: Doscientos siete docentes, en su mayoría mujeres el 92%) y trabajando en escuelas públicas (el 82%). En cuanto al conocimiento, 132 (el 63,8%) tuvieron desempeño insatisfactorio. Las preguntas con las tasas más bajas de respuestas correctas fueron sobre medicamentos utilizados regularmente y durante la crisis. Los docentes con puntajes más altos tenían menos tiempo de trabajo (p = 0,017) y habían sido diagnosticados con asma (p = 0,006). En la etapa cualitativa participaron 35 docentes y las declaraciones corroboraron los hallazgos cuantitativos, especialmente en relación a la brecha de conocimiento y sensación de mayor seguridad entre los docentes asmáticos. Conclusión: Los docentes tenían conocimientos insuficientes y relataron temor y falta de preparación ante la situación.

RESUMO Objetivo: Analisar o conhecimento de professores da Educação Básica com relação à asma e conhecer suas vivências diante da exacerbação dos sintomas na escola. Método: Estudo misto do tipo explanatório sequencial. Na etapa quantitativa, foi aplicado remotamente o Newcastle Asthma Knowledge Questionnaire e o instrumento de caracterização. Dados analisados por estatística descritiva e inferencial. A produção dos dados qualitativos ocorreu a partir de depoimentos escritos analisados pelo método de análise de conteúdo dedutivo. Resultados: Duzentos e sete professores, maioria do sexo feminino (92%) e atuante em escolas públicas (82%). Quanto ao conhecimento, 132 (63,8%) apresentaram desempenho insatisfatório. As questões com menores índices de acerto eram sobre medicamentos utilizados regularmente e na crise. Os professores com maiores pontuações tinham menor tempo de atuação (p = 0,017) e possuíam diagnóstico de asma (p = 0,006). Na etapa qualitativa, participaram 35 professores e os depoimentos corroboraram os achados quantitativos, sobretudo com relação à lacuna de conhecimento e sentimento de maior segurança entre os professores asmáticos. Conclusão: Os professores apresentaram conhecimento insuficiente e relataram medo e despreparo frente à situação.

Health Policies for Rare Disease Patients: A Scoping Review.

OBJECTIVE: To identify and map the available evidence on the implementation of public health policies directed at individuals with rare diseases, and to compare the implementation of these health policies between Brazil and other countries. METHOD: A scoping review guided by the PRISMA-ScR and JBI checklists. The search for articles was conducted in eight electronic databases, MEDLINE/Pubmed, Embase, Cochrane Library, Web of Science, Scopus, CINAHL, PsycINFO, and LILACS, using controlled descriptors, synonyms, and keywords combined with Boolean operators. All steps of this review were independently conducted by two researchers. The selected studies were classified by evidence hierarchy, and a generic quantitative tool was used for the assessment of the studies. RESULTS: A total of 473 studies were identified, of which 13 which met all the inclusion criteria were selected and analyzed. Of these studies, 61.5% (n = 8) had final scores equal to or greater than 70%, i.e., they were classified by this tool as being well-reported. The comparative analysis of international rare diseases demonstrates that public authorities' priorities and recommendations regarding this topic also permeate and apply to the Brazilian context. CONCLUSIONS: The evaluation and monitoring of public policies directed at rare disease patients are urgent and necessary to improve and implement such policies with less bureaucracy and more determination for this unique population that requires timely and high-quality care.

Biomarkers of stress in caregivers of children with special health care needs: A protocol for systematic review.

BACKGROUND: Children with Special Health Care Needs (CSHCN) require greater attention from family caregivers as they present temporary or permanent physical, developmental, behavioral, or emotional issues. This demand for care generates overload and stress among family caregivers. So far, there is no study that gathers the available literature regarding the use of biomarkers to assess stress among caregivers of CSHCN. Hence, we aimed to synthetize and to assess the scientific evidence on biomarkers associated with stress in caregivers of CSHCN. METHODS: This systematic review and meta-analysis protocol was elaborated following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P). The search strategy will be undertaken through 7 electronic bibliographic databases: Embase, MEDLINE/PubMed, Cochrane Library, Web of Science, CINAHL, Scopus, and PsycINFO. In addition, secondary searches in other sources, such as Clinical trials.gov-NIH, The British Library, Pro Quest Dissertations Database, Google Scholar, and medRXiv will be also carried out. The reference section of the included studies will be hand searched for additional relevant studies. There will be no restriction regarding the publication dates or languages for this systematic review. Moreover, in an independently manner, 2 investigators will select studies, perform data extraction, as well as perform a critical appraisal of the risk of bias and overall quality of the selected studies, based on their designs. The heterogeneity among the studies will be assessed using the I2 statistic test. According to the results of this test, we will verify whether a meta-analysis is feasible. If feasibility is confirmed, a random-effect model analysis will be carried out. For data analysis, the calculation of the pooled effect estimates will consider a 95% CI and alpha will be set in 0.05 using the SPSS version 23.0. RESULTS: This systematic review and meta-analysis will provide better insights regarding the biomarkers associated with stress in caregivers of CSHCN. Hence, consistent data and robust evidence will be provided to help practitioners and decision-makers in this area. CONCLUSIONS: To the best of our knowledge this study, will be the first to synthetize and critically evaluate the scientific evidence on biomarkers associated with stress in caregivers of CSHCN.

Cost-effectiveness of home care services versus hospital care for pediatric patients worldwide: A protocol for systematic review and meta-analysis.

BACKGROUND: Despite the expansion of home care services (HCS) in several countries, there is still a need to systematically investigate the available evidence on the cost-effectiveness of this type of service compared to hospital care in the world, particularly for the pediatric population. Hence, we aimed to systematically synthesize and critically evaluate the evidence on the cost-effectiveness of HCS versus in-hospital services worldwide. METHODS: A systematic review and meta-analysis protocol guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols. Ten databases will be searched: MEDLINE/PubMed, Cochrane Library, Excerpta Medica database, cummulative index to nursing and allied health literature (CINAHL), Web of Science, SCOPUS, Science Direct, PsycINFO, Latin American and Caribbean Health Sciences Literature and Chinese national knowledge infrastructure with no restrictions on publication date or languages. A checklist for assessing the quality of reporting of economic evaluation studies will be applied. To assess the methodological quality of evidence from observational research on comparative effectiveness, the Good Research for Comparative Effectiveness Checklist v5.0 will be used. The heterogeneity among the studies will be assessed using the I2 statistic test. According to the results of this test, we will verify whether a meta-analysis is feasible. If feasibility is confirmed, a random-effect model analysis will be carried out. For data analysis, the calculation of the pooled effect estimates will consider a 95% CI and alpha will be set in 0.05 using the R statistical software, v.4.0.4. In addition, we will rate the certainty of evidence based on Grading of Recommendations Assessment, Development and Evaluation. All methodological steps of this review will be performed independently and paired by 2 reviewers and conducted and managed in the EPPI-Reviewer Software™. RESULTS: The results may have relevance for the basis of public health policies, regarding the forms of organization of HCS, especially in terms of complete economic evaluations through cost-effectiveness analysis in relation to hospital care. CONCLUSION: To the best of our knowledge this will be the first systematic review and metanalysis to synthesize and critically evaluate the evidence on the cost-effectiveness of HCS versus in-hospital services worldwide. The review will adopt a rigorous approach, adhering to PRISMA Statement 2020, using a comprehensive and systematic search strategy in 10 databases, further the gray literature, pre-prints, with no time period or language restrictions.

Prevalence of children with special healthcare needs: An epidemiological survey in Brazil.

PURPOSE: We aimed to estimate the prevalence and delineate the profile of children with special healthcare needs (CSHCN) in the three municipalities of Brazil's southern and southeastern regions from 2015 to 2017. DESIGN AND METHODS: This cross-sectional study included 6853 children aged 0-11 years. Participants were selected through complex sampling in 32 primary healthcare units. The Brazilian version of the Children with Special Healthcare Needs Screener© and a questionnaire were used to identify sociodemographic and family characteristics, health status, and health services utilization. Simple and multiple logistic regression models were used to evaluate the association between family and child characteristics and prevalence (P < 0.05). RESULTS: The prevalence of CSHCN was 25.3% (95% confidence interval: 21.0-30.0). Most participants required health services or were on long-term medication for a current chronic condition; approximately 53% of CSHCN had no formally recorded diagnoses. The most frequent health problems were respiratory conditions, asthma, and allergies. Approximately 60% of the CSHCN patients underwent follow-up examinations of the specialties pneumology, pediatrics, otorhinolaryngology, speech therapy, neurology, and psychology. Children of school age, of male sex, with premature birth, with a history of recurrent hospitalization, from non-nuclear families, and from underprivileged social classes were identified as risk factors for classification as CSHCN. PRACTICE IMPLICATION: These results contribute to the unprecedented mapping of these children in healthcare networks in Brazil. CONCLUSION: The high prevalence of CSHCN in medium and large municipalities in the southern and southeastern regions was associated with the child's previous health conditions and family structure.

Essential core competencies for scope of practice of paediatric oncology nurses in Latin America: a scoping review protocol.

INTRODUCTION: Nurses comprise the largest group of health workers globally and are essential to the provision of care necessary for delivering curative therapy to children with cancer. In high-income countries, previous studies of the nurse workforce have shown an association between patient morbidity and mortality and nursing-related factors such as staffing, education and the nursing practice environment. There is currently limited evidence available to define the scope of essential core competencies for paediatric oncology nursing (PON) practice internationally and specifically in Latin America. Clearly defined essential core competencies contribute to establishing nurses' scope of practice within clinical practice, education and research settings. Here, we aimed to map and synthesise the available evidence on the scope of PON practices in the context of clinical practice, educational training and research settings in Latin America. METHODS: A scoping review (ScR) protocol is reported, adhering to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols statement and guided by The Joanna Briggs Institute. MEDLINE/PubMed, Cochrane Library, Embase, CINAHL, Web of Science, Scopus, Science Direct and Latin American and Caribbean Health Sciences Literature, plus additional sources: The ProQuest Dissertation & Theses Global, The British Library, Google Scholar, medRXiv, ClinicalTrials.gov and WHO-ICTRP will be searched. No date or language restrictions will be employed. Two independent researchers will conduct all the steps of this ScR. The findings will be presented through tables, charts, narrative summaries and assessed based on the outcomes. The search strategy will be updated in May 2022. The expected completion date for this ScR is November 2022. ETHICS/DISSEMINATION: This protocol does not require ethical approval. The dissemination plans comprise peer-reviewed publication and conference presentations, to be shared with International Oncology Societies/International Nursing Societies and advisory groups to inform discussions on future research. We expect that our results will be of interest to nurse professionals, especially, PON and nurse scholars concerned with this particular issue.

Telehealth in outpatient care for children and adolescents with chronic conditions during the COVID-19 pandemic: A scoping review protocol.

INTRODUCTION: Outpatient care for children and adolescents with chronic conditions needs to be continuous and programmed, encompassing comprehensive care, with periodically scheduled consultations, exams, and procedures, to promote quality of life and reduce mortality. In the context of the new coronavirus pandemic, however, outpatient care for children and adolescents with chronic conditions, in person, was hampered in favor of social isolation, a necessary sanitary measure to reduce and prevent the spread of Coronavirus Disease 2019. In response to this need, studies suggest telehealth in pediatrics as a fertile and expanding field especially in times of pandemics. Here, we aimed to map the evidence related to telehealth in outpatient care for children and adolescents with chronic conditions during the COVID-19 pandemic, to identify which strategies were implemented and their impacts on the continuity of care. METHODS: A scoping review protocol is reported and guided by the Scoping Reviews Manual of the Joanna Briggs Institute. The search for evidence will cover the following databases: MEDLINE/PubMed, Cochrane Libary; Embase; Web of Science; Scopus; Cinahl and PsycINFO, plus additional sources, such as The British Library, Google Scholar, and Preprints [medRXiv]. No date or language restrictions will be employed in this scoping review. Two independent researchers will conduct the search strategy, study selection, data charting, and data synthesis. RESULTS: The findings will be presented through tables, charts, narrative summaries, and assessed based on the type of data charted as well as outcomes. Additionally, the meaning of these findings will be considered as they relate to the guiding question, the characterization and measurement of the impact of different telehealth modalities used in outpatient care for children and adolescents with chronic conditions during the COVID-19 pandemic, and the implications for practice and further research. DISCUSSION: To the best of our knowledge, this will be the first scoping review to look specifically at the telehealth modalities to be used in outpatient care for children and adolescents with chronic conditions during the COVID-19 pandemic. We expect that our results will be of interest to practitioners as well as researchers concerned with this particular emerging issue in the pandemic context. Also, the plans for the dissemination of this study comprise peer-reviewed publication and conference presentations. TRIAL REGISTRATION: Open Science Framework Registration: osf.io/5pqgu.

Qualidade de vida da população infantojuvenil oncológica com e sem fadiga / Calidad de vida de la población infantojuvenil oncológica con y sin fatiga / Quality of life of cancer children-adolescents with and without fatigue

Resumo Objetivo Comparar os escores de qualidade de vida relacionada à saúde (QVRS) de crianças e adolescentes hospitalizados com câncer que apresentaram e não apresentaram fadiga e correlacionar fadiga e QVRS. Método Estudo transversal realizado durante 48 meses no setor de onco-hematologia de hospital público localizado no interior paulista, com 63 crianças e adolescentes com câncer. Para mensurar a fadiga e a QVRS, os participantes preencheram, respectivamente, os instrumentos Pediatric Quality of Life Inventory™ Escala Multidimensional do Cansaço e Pediatric Quality of Life Inventory™ Inventário Pediátrico de Qualidade de Vida, versão acute, no módulo genérico e módulo câncer. Os dados foram analisados por meio de estatística descritiva, bivariada e multivariada. Resultados As médias dos escores total de fadiga (61,2±16,3) e QVRS (genérica: 61,5±20,5; câncer: 61,2±16,3) foram baixas, demonstrando que as crianças e os adolescentes com câncer se apresentam fadigados (p=0,000) e com baixa qualidade de vida (p=0,000). No modelo de regressão, a fadiga pôde ser explicada em 61,25% pelas variáveis funcionamento emocional (p=0,0110), funcionamento escolar (p=0,0004) e dificuldades cognitivas (p=0,0017). Participantes sem fadiga apresentaram melhor escore médio de QVRS quando comparado ao grupo com fadiga. Conclusão Crianças e adolescentes hospitalizados com câncer apresentam baixa qualidade de vida e altos níveis de fadiga. Ainda, é positiva a relação entre algumas dimensões da QVRS com a fadiga, indicando que, quanto pior for o funcionamento escolar e emocional e maiores forem as dificuldades cognitivas, maior também será a fadiga.

Resumen Objetivo Comparar las puntuaciones de calidad de vida relacionadas con la salud (CVRS) de niños y de adolescentes hospitalizados con cáncer que presentaron y que no presentaron fatiga y correlacionar la fatiga y la CVRS. Métodos Estudio transversal realizado durante 48 meses en el sector de oncohematología de un hospital público ubicado en el interior del estado de São Paulo, con 63 niños y adolescentes con cáncer. Para medir la fatiga y la CVRS, los participantes rellenaron, respectivamente, los instrumentos Pediatric Quality of Life Inventory™ Escala Multidimensional del Cansacio y Pediatric Quality of Life Inventory™ Cuestionario de Calidad de Vida Pediátrica, versión acute, en el módulo genérico y en el módulo cáncer. Los datos fueron analizados por medio de estadística descriptiva, bivariada y multivariada. Resultados Los promedios de las puntuaciones total de fatiga (61,2±16,3) y CVRS (genérica: 61,5±20,5; cáncer: 61,2±16,3) fueron bajas, demostrando que los niños y los adolescentes con cáncer se muestran fatigados (p=0,000) y con baja calidad de vida (p=0,000). En el modelo de regresión, se puede explicar la fatiga en el 61,25 % por las variables funcionamiento emocional (p=0,0110), funcionamiento escolar (p=0,0004) y dificultades cognitivas (p=0,0017). Participantes sin fatiga presentaron mejor puntuación promedio de CVRS al compararlos con el grupo sin fatiga. Conclusión Niños y adolescentes hospitalizados con cáncer presentan baja calidad de vida y altos niveles de fatiga. Aun así, es positiva la relación entre algunas dimensiones de la CVRS con la fatiga, indicando que, cuanto peor sea el funcionamiento escolar y emocional y mayores sean las dificultades cognitivas, mayor será también la fatiga.

Abstract Objective To compare the health-related quality of life (HRQoL) scores of children and adolescents hospitalized with cancer who had and did not have fatigue and to correlate fatigue and HRQoL. Method This is a cross-sectional study carried out for 48 months in the onco-hematology sector of a public hospital located in the interior of São Paulo, with 63 children and adolescents with cancer. To measure fatigue and HRQoL, participants completed the instruments Pediatric Quality of Life Inventory™ Multidimensional Fatigue Scale and Pediatric Quality of Life Inventory™ Pediatric Quality of Life Inventory - acute version - in the generic module and cancer module. Data were analyzed using descriptive, bivariate and multivariate statistics. Results The means of the total fatigue scores (61.2±16.3) and HRQoL (generic: 61.5±20.5; cancer: 61.2±16.3) were low, demonstrating that children and adolescents with cancer are fatigued (p=0.000) and with low quality of life (p=0.000). In the regression model, fatigue could be explained in 61.25% by the variables emotional functioning (p=0.0110), school functioning (p=0.0004) and cognitive difficulties (p=0.0017). Participants without fatigue had better mean HRQoL score when compared to the group with fatigue. Conclusion Children and adolescents hospitalized with cancer have a low quality of life and high levels of fatigue. Furthermore, the relationship between some HRQoL dimensions and fatigue is positive, indicating that the worse the school and emotional functioning and the greater the cognitive difficulties, the greater the fatigue.

The power of play in pediatric nursing: the perspectives of nurses participating in focal groups / La fuerza del jugar-cuidar en la enfermería pediátrica: perspectivas de enfermeros en grupos de enfoque / A força brincar-cuidar na enfermagem pediátrica: perspectivas de enfermeiros em grupos focais

ABSTRACT Objective: to understand how nurses assess the implementation of therapeutic play by the nursing staff in the care provided to children. Method: qualitative study addressing nurses providing pediatric care in hospitals located in five Brazilian regions. Face-to-face meetings were held with nine focal groups between January and August 2018. The sessions lasted two hours on average and were audio-recorded and transcribed verbatim. Data were analyzed through inductive thematic analysis. Results: 52 nurses reported their perspectives regarding play and therapeutic play implemented in the care provided to children, which revealed The power of Play-Care implemented in nursing care: advancements and challenges and its subthemes: using puppets/dolls and dramatizing procedures; using distraction strategies to perform the procedures; wearing colorful and fun uniforms; recognizing the power of play in nursing care; and barriers challenging the connection between play and care in nursing practice. Conclusion: the power of Play-Care is manifested in the routine of nursing care through playful attitudes; however, these attitudes appear to be individual initiatives rather than systematized in the nursing process. Hence, there is a need to expand the possibilities of teaching this topic by promoting training programs, including practical activities and virtual learning environments.

RESUMEN Objetivo: comprender cómo los enfermeros evalúan la utilización del jugar e del juguete terapéutico, en el equipo de enfermería en el cuidado a niños. Método: estudio cualitativo con enfermeros actuantes en el cuidado pediátrico hospitalario de las cinco regiones de Brasil. Nueve grupos de enfoque presenciales fueron realizados entre enero y agosto de 2018. Las sesiones tuvieron duración media de dos horas, que fueron grabadas en audio, transcritas y analizadas según el análisis temático inductivo. Resultados: 52 enfermeros relataron sus perspectivas sobre el jugar y el juguete terapéutico en el cuidado a niños, revelando La fuerza del Jugar-Cuidar en el cuidado de enfermería: avances y desafíos y, sus subtemas: uso de muñecos y la dramatización de procedimientos; uso de la distracción para realización de procedimientos; uso de uniformes coloridos y divertidos; reconocimiento de la potencia del jugar en el cuidado de enfermería y barreras desafiadoras de la conexión jugar-cuidar en enfermería. Conclusión: la fuerza del jugar-cuidar se revela en lo cotidiano del cuidar de la enfermería, por medio de actitudes lúdicas; sin embargo, fueron identificadas como individuales y no sistematizadas en el proceso de enfermería. Se revela la necesidad de ampliar las posibilidades de la enseñanza de la temática, en la forma de capacitaciones, incluyendo actividades prácticas o además, que se hagan disponibles cursos en ambientes virtuales de aprendizaje.

RESUMO Objetivo: compreender como os enfermeiros avaliam a utilização do brincar e do brinquedo terapêutico pela equipe de enfermagem no cuidado à criança. Método: estudo qualitativo com enfermeiros atuantes no cuidado pediátrico hospitalar das cinco regiões do Brasil. O total de nove grupos focais presenciais foi realizado entre janeiro e agosto de 2018. As sessões tiveram duração média de duas horas, foram audiogravadas, transcritas e analisadas segundo a análise temática indutiva. Resultados: 52 enfermeiros relataram suas perspectivas sobre o brincar e o brinquedo terapêutico no cuidado à criança, revelando A força do Brincar-Cuidar no cuidado de enfermagem: avanços e desafios e, seus subtemas: uso de bonecos e a dramatização de procedimentos; uso da distração para realização de procedimentos; uso de uniformes coloridos e divertidos; reconhecendo a potência do brincar no cuidado de enfermagem e barreiras desafiadoras da conexão brincar-cuidar em enfermagem. Conclusão: a força do brincar-cuidar se revela no cotidiano do cuidado de enfermagem por meio de atitudes lúdicas, no entanto, são identificadas como individuais e não sistematizadas no processo de enfermagem. Revela-se a necessidade de ampliação das possibilidades de ensino da temática na forma de capacitações, incluindo atividades práticas ou ainda, que sejam disponibilizados cursos em ambientes virtuais de aprendizagem.

Effectiveness of complementary therapies for the management of symptom clusters in palliative care in pediatric oncology: a systematic review.

OBJECTIVE: To evaluate the effectiveness of complementary therapies in the management of symptom clusters in children and adolescents with cancer undergoing palliative care. METHOD: Systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, resorting to the databases MEDLINE, Web of Science, Central Cochrane, and PsycINFO. The identification, selection, inclusion, extraction, and methodological assessment were conducted by two independent reviewers. RESULTS: Five quasi-experiments met the eligibility criteria. The heterogeneous characteristics of the studies made meta-analysis impossible. Two studies used therapeutic massage, one used Reiki, one used boswellic acid, and one used Cannabis sativa; three of them (therapeutic massage and Reiki) presented statistically significant results for the management of the cluster pain-anxiety-worry-dyspnea. Most studies presented a moderate risk of bias as per ROBINS-I tool. CONCLUSION: Therapeutic massage and Reiki may be effective for the symptom clusters management, especially the pain-anxiety-worry-dyspnea cluster in children and adolescents undergoing palliative care.

Fertility-Related Concerns and Uncertainties in Adolescent and Young Adult Childhood Cancer Survivors.

Purpose: This study aimed to uncover the fertility-related concerns and uncertainties in adolescent and young adult (AYA) childhood cancer survivors. Methods: In this qualitative study, participants were recruited from an oncohematology outpatient clinic at a university hospital in Brazil. Twenty-four AYA cancer survivors, aged 18- 24 years (13 men and 11 women), participated in individual semistructured interviews focusing on two parts-sociodemographic and clinical variables and guiding questions that enabled understanding of the concerns and uncertainties regarding the risks of infertility and their impact on relationships and the need for guidance. Data were analyzed using inductive thematic analysis. Results: Four themes were identified from the data-(1) knowledge about fertility, (2) emotional impact and fertility-related uncertainty, (3) sharing the possible risk of infertility with partners, and (4) need for information on possible loss of fertility. Conclusion: The meanings attributed to the loss of fertility after cancer treatment uncovered the need for health professionals to organize survivor services in line with the survivors' needs, and include reproductive concerns and uncertainties in this planning. The study results provide insights for the development of health care services that meet the real needs of this particular population that has long-term follow-up demands.

Nurses' Perspectives on Acquiring Play-Based Competence Through an Online Course: A Focus Group Study in Brazil.

PURPOSE: The main stage of developing an educational health technology is meeting the expectations of users. Nurses in Brazil can benefit from online training about therapeutic play interventions. This study identified the learning demands of nurses for acquiring competence in the use of therapeutic play to build an online course. DESIGN AND METHODS: Focus groups study, guided by the COREQ guidelines. Nurses experienced in pediatric care participated in eight groups held in hospitals across all Brazilian regions in 2018. The focus group interviews had a mean duration of two hours and were moderated by the main researcher and an observer, both of whom were nurses experienced in qualitative research. All interviews were audio recorded. The transcripts of the audios were coded, from which the themes were developed, and thematic analysis performed. RESULTS: Nurses (N = 53, 8.5 ± 6.3 years of experience in pediatric care) reported their learning demands in three themes: "Learning theoretical concepts", "Developing therapeutic play skills", and "Learning the therapeutic play in a fun, interactive and motivational online environment". CONCLUSION: Nurses learning demands involve theoretical concepts and skills to implement therapeutic play through an interesting online course. PRACTICE IMPLICATIONS: By developing play-based competence through an online learning environment nurses can feel confident in implementing therapeutic play into their pediatric practice, setting the stage for a future of positive interaction between nurses and children in pediatric health care.

Biomarcadores associados à defechos clínicos pós-cirurgia cardíaca em terapia intensiva pediátrica / Biomarcadores relacionados con resultados clínicos en el posoperatorio de cirugía cardíaca en cuidados intensivos pediátricos / Biomarkers associated with postoperative cardiac surgery clinical outcomes in pediatric intensive care

Resumo Objetivo: Sintetizar e analisar criticamente a literatura a respeito de potenciais biomarcadores associados à desfechos clínicos no pós-operatório de cirurgia cardíaca em lactentes e crianças em cuidados intensivos. Métodos: Revisão integrativa, cuja busca ocorreu nos meses de setembro e dezembro de 2019, nas bases de dados MEDLINE, ISI of Knowledge, CENTRAL Cochrane, EMBASE, CINAHL, Science Direct e LILACS para responder à questão norteadora: "Quais as evidências científicas acerca de potenciais biomarcadores relacionados à desfechos clínicos no pós-operatório de cirurgia cardíaca de lactentes e crianças em cuidado intensivo?" Foram incluídos artigos originais publicados entre 2000 e 2019, nos idiomas inglês, português ou espanhol. Excluiu-se toda a literatura cinzenta. Resultados: A amostra final foi constituída por oito artigos, sendo seis estudos observacionais prospectivos descritivos e dois coortes prospectivas. Na maioria dos estudos os pacientes pediátricos foram submetidos à técnica de Bypass Cardiopulmonar (BCP) intraoperatória durante cirurgia de cardiopatia congênita. Os potenciais biomarcadores analisados foram moléculas participantes de processos imune-inflamatórios, predominantemente citocinas pró-inflamatórias tais como IL-1β, IL-6, IL-8 e o fator de necrose tumoral-α (TNF-α) e seu receptor, ou citocinas anti-inflamatórias como a IL-10. Conclusão: As citocinas IL-6, IL-8 e IL-10, o cortisol e o lactato, apresentaram-se como moléculas promissoras para elucidação de mecanismos subjacentes a desfechos clínicos no pós-operatório de cirurgia cardíaca em lactentes e/ou crianças em cuidado intensivo. Tais moléculas podem assumir um caráter preventivo, podendo futuramente ser utilizadas como ferramentas diagnósticas e prognósticas alternativas para um regime que permita identificar pacientes sob alto risco de desenvolver complicações clínicas nos pós-operatórios.

Resumen Objetivo: Sintetizar y analizar críticamente la literatura sobre potenciales biomarcadores relacionados con resultados clínicos en el posoperatorio de cirugía cardíaca de lactantes y niños en cuidados intensivos. Métodos: Revisión integradora, cuya búsqueda ocurrió en los meses de septiembre y diciembre de 2019, en las bases de datos MEDLINE, ISI of Knowledge, CENTRAL Cochrane, EMBASE, CINAHL, Science Direct y LILACS para responder la pregunta orientadora: "¿Cuáles son las evidencias científicas sobre potenciales biomarcadores relacionados con resultados clínicos en el posoperatorio de cirugía cardíaca de lactantes y niños en cuidados intensivos?". Se incluyeron artículos originales publicados entre los años 2000 y 2019, en idioma inglés, portugués o español. Se excluyó toda la literatura gris. Resultados: La muestra final fue formada por ocho artículos, de los cuales seis eran estudios observacionales prospectivos y dos cohortes prospectivas. En la mayoría de los estudios, los pacientes pediátricos fueron sometidos a la técnica de bypass cardiopulmonar (BCP) intraoperatoria durante la cirugía de cardiopatía congénita. Los potenciales biomarcadores analizados fueron moléculas participantes de procesos inmunoinflamatorios, predominantemente citocinas proinflamatorias tales como IL-1β, IL-6, IL-8 y el factor de necrosis tumoral-α (TNF-α) y su receptor, o citocinas antinflamatorias como la IL-10. Conclusión: Las citocinas IL-6, IL-8 e IL-10, el cortisol y el lactato, se presentaron como moléculas promisorias para explicar mecanismos subyacentes de los resultados clínicos en el posoperatorio de cirugía cardíaca de lactantes o niños en cuidados intensivos. Estas moléculas pueden asumir un carácter preventivo y, en un futuro, pueden utilizarse como herramientas alternativas de diagnóstico y pronóstico para un régimen que permita identificar pacientes con alto riesgo de presentar complicaciones clínicas en el posoperatorio.

Abstract Objective: To summarize and critically analyze the literature on potential biomarkers associated with clinical outcomes in the postoperative cardiac surgery period in infants and children under intensive care. Methods: Integrative review, whose search was carried out in September and December 2019 in the databases MEDLINE, ISI Web of Knowledge, Cochrane Central Register of Controlled Trials, Embase, Cumulative Index to Nursing and Allied Health Literature, Science Direct, and Latin America and Caribbean Center on Health Sciences Information to answer the following guiding question: "What is the scientific evidence on potential biomarkers associated with clinical outcomes in the postoperative cardiac surgery period in infants and children under intensive care?". Original articles published between 2000 and 2019 in English, Spanish, or Portuguese were included. Gray literature was excluded. Results: Eight articles made up the final sample (six descriptive observational prospective studies and two prospective cohort studies). Most studies, pediatric patients were submitted to the intraoperative cardiopulmonary bypass technique during congenital heart disease surgeries. The potential biomarkers analyzed were molecules that participate in immune-inflammatory processes, mainly proinflammatory cytokines such as IL-1β, IL-6, IL-8, and tumor necrosis factor-alpha and its receptor, as well as anti-inflammatory cytokines such as IL-10. Conclusion: The IL-6, IL-8, and IL-10 cytokines, cortisol, and lactate showed as promising molecules for elucidating mechanisms underlying clinical outcomes in the postoperative cardiac surgery period in infants and/or children under intensive care. These molecules can take on a preventive role by being used as a diagnostic and prognostic tool in the future in a protocol that allows to identify patients with high risk to develop clinical complications during the postoperative period.

Children and youth with special healthcare needs: (dis) continuity of care / Niños y adolescentes com necesidades especiales de salud: (dis)continuidad del cuidado / Crianças e adolescentes com necessidades especiais de saúde: (des)continuidade do cuidado

ABSTRACT Objective to investigate the follow-up and characteristics of children and youth with special healthcare needs within Primary Health Care services located in a city in the State of São Paulo, Brazil. Method this qualitative study was supported by the Primary Health Care framework, and interviews were held with 37 health workers from the primary health care units located in the interior of São Paulo. Data were collected from May to December 2018 and treated with inductive thematic analysis. Results from the perspective of the health workers, the characteristics of these children and youth are centered on the dependence of specific care such as to promote psychomotor development, and dependence on technology and pharmacological treatments. They reported the difficulty to access health services while the primary health care services do not implement systematic follow-up. Conclusion these children and youth demand continuous and longitudinal care, which, however, is not provided by primary health care services, considering the discontinuity of care and a lack of networked follow-up. Therefore, health services need to be reorganized to keep up with changes in the child and youth morbidity and mortality to ensure continuous, integral, and networked follow-up to this population.

RESUMEN Objetivo investigar el acompañamiento y las características de niños y adolescentes con necesidades especiales de salud, en los servicios de Atención Primaria a la Salud, en un municipio del Estado de Sao Paulo. Método estudio de abordaje cualitativo, apoyado en el cuadro teórico de la Atención Primaria a la Salud, desarrollado por medio de entrevistas con 37 profesionales de la salud, de unidades de atención primaria, de un municipio del interior del estado de Sao Paulo. Los datos recogidos, entre los meses de mayo y diciembre de 2018, fueron sometidos al análisis temático inductivo. Resultados para los profesionales de la salud, las características de esos niños y adolescentes se enfocaron en la dependencia de cuidados específicos, como los cuidados para el desarrollo psicomotor, tecnológico y medicamentoso. Ellos relataron la dificultad de acceso a esa clientela a los servicios de salud y la falta de acompañamiento sistemático por los servicios de atención primaria. Conclusión esos niños y adolescentes demandan un cuidado continuo y longitudinal, el cual no fue sustentado por los servicios de atención primaria, teniendo en consideración la discontinuidad del cuidado y la ausencia del cuidado en red. De esa forma, es necesario reorganizar los servicios de salud para acompañar los cambios en el perfil de morbilidad y mortalidad infantojuvenil, de modo a asegurar el acompañamiento continuo, integral y en red de esta población.

RESUMO Objetivo investigar o acompanhamento e as características de crianças e adolescentes com necessidades especiais de saúde nos serviços de Atenção Primária à Saúde em um município do Estado de São Paulo. Método estudo de abordagem qualitativa, apoiado no quadro teórico da Atenção Primária à Saúde, desenvolvido por meio de entrevista com 37 profissionais de saúde de unidades de atenção primária de um município do interior do Estado de São Paulo. Os dados coletados entre os meses de maio e dezembro de 2018 foram submetidos à análise temática indutiva. Resultados para os profissionais de saúde, as características dessas crianças e adolescentes centraram-se na dependência de cuidados específicos como cuidados para o desenvolvimento psicomotor, tecnológico e medicamentoso. Eles relataram a dificuldade de acesso aos serviços de saúde e a falta de acompanhamento sistemático pelos serviços de atenção primária. Conclusão essas crianças e adolescentes demandam um cuidado contínuo e longitudinal, o qual não foi sustentado pelos serviços de atenção primária, tendo em vista a descontinuidade do cuidado e a ausência do cuidado em rede. Dessa forma, faz-se necessário reorganizar os serviços de saúde para acompanhar as mudanças no perfil de morbimortalidade infantojuvenil, de modo a assegurar o acompanhamento contínuo, integral e em rede desta população.