"Opportunistic Care": A Focus Group Study of Nurses' Perspective on Caring for Long-term Cancer Survivors and Their Families.

BACKGROUND: The global population of long-term cancer survivors is increasing, thanks to advances in treatments and care. Healthcare systems are working to address the unique needs of these individuals. However, there remains a knowledge gap concerning nurses' view on cancer survivorship care. OBJECTIVE: To identify nurses' perspective of care for long-term cancer survivors and their families. METHODS: This qualitative descriptive study used 5 focus groups comprising 33 nurses from primary healthcare and specialized oncology care. Data analysis was conducted through thematic analysis, and the study received ethical approval. RESULTS: Long-term cancer survivors and their families often remained unrecognized as a distinct group within the healthcare system. Consequently, nurses provide what can be termed as "opportunistic care" during nurse-survivor encounters, addressing health needs beyond the purpose of the initial healthcare visit. This absence of a systematic or structured approach for this patient group has prompted nurses to seek the establishment of a comprehensive framework through survivorship care plans, thus ensuring a continuum of care for this specific population. CONCLUSION: The lack of a structured approach to caring for long-term cancer survivors and their families, often invisible as a distinct population group, results in nurses providing care on an opportunistic basis. IMPLICATIONS FOR PRACTICE: It is crucial to develop and implement survivorship care plans tailored to this population's needs. Simultaneously, it is important to advance research in this area and establish an educational framework for nurses, enabling them to effectively address the care of long-term cancer survivors and their families.

"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.

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.

Clinical and sociodemographic factors associated with the quality of life of children and adolescents with type 1 diabetes.

OBJECTIVE: To analyze clinical and sociodemographic factors associated with the health-related quality of life of children and adolescents with type 1 Diabetes Mellitus. METHOD: A quantitative, cross-sectional and analytical study, developed in a municipality in northeastern Brazil, between March and September 2021, with 81 children/adolescents with type 1 Diabetes Mellitus and their guardians/caregivers. A questionnaire containing sociodemographic and clinical variables and two quality of life instruments were used. Descriptive and inferential analysis was carried out. RESULTS: Adolescents whose parents had a family income greater than a minimum wage had a lower prevalence of impaired quality of life when compared to those with a lower income. Adolescents with time since diagnosis of less than four years had a satisfactory quality of life, and children aged 8 to 12 years who self-administered insulin had a lower prevalence of high quality of life compared to those who did not. CONCLUSION: Adolescents with a family income of less than a minimum wage, diagnosis time of more than four years and children aged 8-12 who self-administer insulin need greater professional support to have a better quality of life.

Prototyping Process and Usability Testing of a Serious Game for Brazilian Children With Type 1 Diabetes.

This study aims to describe the prototype development and testing of a serious game designed for Brazilian children with diabetes. Following an approach of user-centered design, the researchers assessed game's preferences and diabetes learning needs to develop a Paper Prototype. The gameplay strategies included diabetes pathophysiology, self-care tasks, glycemic management, and food group learning. Diabetes and technology experts (n = 12) tested the prototype during audio-recorded sessions. Next, they answered a survey to evaluate the content, organization, presentation, and educational game aspects. The prototype showed a high content validity ratio (0.80), with three items not achieving the critical values (0.66). Experts recommended improving the game content and food illustrations. This evaluation contributed to the medium-fidelity prototype version, which after testing with diabetes experts (n = 12) achieved high content validity values (0.88). One item did not meet the critical values. Experts suggested increasing the options of outdoor activities and meals. Researchers also observed and video-recorded children with diabetes (n = 5) playing the game with satisfactory interaction. They considered the game enjoyable. The interdisciplinary team plays an important role guiding the designers in the use of theories and real needs of children. Prototypes are a low-cost usability and a successful method for evaluating games.

Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations.

OBJECTIVE: To provide five methodological and pragmatic tips for conducting remote qualitative data collection during the context of the COVID-19 pandemic. METHOD: The tips presented in this article are drawn from insights of our own experiences as researchers conducting remote qualitative research and from the evidence from the literature on qualitative methods. The relevant literature was identified through searches using relevant keywords in the following databases: CINAHL, PubMed, SCOPUS, and Web of Science. Searches were limited to articles in English and Portuguese, published from 2010 to 2021, to ensure a current understanding of the phenomenon. RESULTS: Five tips are provided: 1) Pay attention to ethical issues; 2) Identify and select potential participants; 3) Choose the type of remote interview; 4) Be prepared to conduct the remote interview; and 5) Build rapport with the participant. CONCLUSION: Despite the challenges in conducting remote data collection, strengths are also acknowledged and our experience has shown that it is feasible to recruit and interview participants remotely. The discussions presented in this article will benefit, now and in the future, other research teams who may consider collecting data for their qualitative studies remotely.

Experiências de luto parental após um natimorto: uma síntese temática no contexto da América Latina / Parental grieving experiences after stillbirth: a thematic synthesis in the context of Latin America

OBJETIVO: Sintetizar estudos qualitativos sobre as experiências de luto após um natimorto em pais que vivem na América Latina. MÉTODO: Revisão sistemática qualitativa realizada em quatro bases de dados eletrônica e que utilizou o Guideline Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A qualidade metodológica dos estudos incluídos foi avaliada usando o Critical Appraisal Skills Programme e uma síntese temática foi realizada. RESULTADOS: Um total de 110 estudos foram encontrados e quatro estudos eleitos com base nos critérios de elegibilidade. Quatro temas apresentam a experiência de luto parental: impacto, sofrimento e transformação após a morte fetal; preocupação com o corpo do bebê falecido; insatisfação com a qualidade da assistência em saúde; e família e religião como principais fontes de apoio. CONCLUSÃO: A natimortalidade na América Latina precisa ser explorada em pesquisas futuras e ainda é marcada pela desassistência no processo de luto.

OBJECTIVE: To synthesize qualitative studies on Latin American parents' grieving experiences after a stillbirth. METHOD: A systematic qualitative review was conducted in four electronic databases using the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guideline. The methodological quality of included studies was assessed using the Critical Appraisal Skills Programme, and a thematic synthesis was performed. RESULTS: One hundred ten studies were found, and four were chosen based on the eligibility criteria. Four themes were identified concerning the experience of parental grieving: impact, suffering, and transformation after fetal death; preoccupation with the deceased baby's body; dissatisfaction with the quality of health care; and family and religion as the primary sources of support. CONCLUSION: Stillbirth in Latin America must be explored in future research, and a lack of assistance still marks the grieving process.

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

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

Body image experience of women with breast cancer: A meta-synthesis.

BACKGROUND: Body image is a multidimensional concept that involves the mental image of the human body and the feeling of being oneself throughout existence. Treatment for breast cancer causes several bodily changes that affect women's body image. AIMS: This meta-synthesis aims to synthesise and interpret primary qualitative studies on the experience of body image in women undergoing treatment for breast cancer. METHODS: A qualitative meta-synthesis was conducted employing systematic searches in six databases (PubMed, CINAHL, SCOPUS, Web of Science, PsycINFO, and LILACS). Data analysis was performed according to thematic synthesis. RESULTS: Forty studies were included. Five descriptive themes were identified: (1) actively saying goodbye to body image; (2) the rupture of body image; (3) the sacrifice of body image in exchange for life; (4) body image as a vehicle for social expression; and (5) resignation of the alterated body image. These themes were understood through one analytical theme: Half-woman: body image of the woman with breast cancer. CONCLUSION: The experience of body image in the context of breast cancer is a dynamic phenomenon, which involves dismissal, rupture, and resignation and occurs mediated by interpersonal contact.

Functioning of structurally diverse families living with adolescents and children with chronic disease: A metasynthesis.

PURPOSE: The diagnosis of children and adolescents with a chronic disease may affect the entire family system. When families have diverse structures, additional tensions can be present and affect the balance of family functioning. This metasynthesis aims to analyze and synthesize qualitative evidence on the functioning of structurally diverse families who live with adolescents and children with chronic disease. DESIGN: Qualitative metasynthesis. METHODS: Systematic searches up to 2021 were performed in PubMed, CINAHL, PsycINFO, SCOPUS, LILACS, and Web of Science and supplemented by manual search strategies. It followed guidelines from the statement in the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A quality appraisal of each study was undertaken using the Critical Appraisal Skills Programme. Data synthesis was conducted according to the thematic synthesis approach. FINDINGS: Of a total of 6538 references identified, 9 studies were included in the metasynthesis. The thematic synthesis enabled the construction of three analytical themes: "Family structural changes and weakened co-parenting"; "Family rearrangements and the challenges faced by families"; and "Committed to healthy family functioning for the child's well-being: Searching for family homeostasis". CONCLUSIONS: The themes showed that the causes of the rupture in the family unit interfere in family functioning, making it ineffective. In most families, family functioning is centered on the mothers. Faced with the need to care for children and adolescents and to control chronic disease, structurally diverse families need to adjust their family functioning and search for family homeostasis. CLINICAL RELEVANCE: The results of this review can support nurses to target their care toward these families and formulate effective interventions that promote, strengthen, or maintain the healthy functioning of these families.

Interface trabalho-tratamento hemodialítico em pacientes com insuficiência renal crônica: revisão de escopo / Interfaz trabajo-tratamiento hemodialítico en pacientes con insuficiencia renal crónica: revisión de alcance / Work-hemodialysis treatment interface in patients with chronic kidney disease: a scoping review

Resumo Objetivo Analisar as evidências científicas sobre o impacto do tratamento hemodialítico no trabalho de pacientes com insuficiência renal crônica. Métodos Revisão de escopo realizada por meio de buscas em cinco bases de dados: PubMed, LILACS, CINAHL, PsyInfo e Scopus. Foram incluídos estudos publicados entre 2010 e 2020, nos idiomas português, espanhol e inglês, de abordagem qualitativa ou quantitativa, com pacientes em tratamento hemodialítico para insuficiência renal crônica, que tivessem foco no trabalho, emprego ou produtividade. Resultados Os 18 estudos incluídos na revisão mostram o impacto do tratamento hemodialítico na relação com o trabalho e as razões associadas à desempregabilidade. Tais razões envolvem características sociodemográficas, debilidade física, tratamento e apoio familiar e do empregador. Conclusão Após o início da hemodiálise, nota-se o comprometimento da capacidade funcional tanto física como psicológica dos pacientes, sendo necessárias alterações nos hábitos de vida em decorrência das restrições impostas pela insuficiência renal crônica e da diminuição da produtividade.

Resumen Objetivo Analizar las evidencias científicas sobre el impacto del tratamiento hemodialítico en el trabajo de pacientes con insuficiencia renal crónica. Métodos Revisión de alcance realizada mediante búsquedas en cinco bases de datos: PubMed, LILACS, CINAHL, PsyInfo y Scopus. Se incluyeron estudios publicados entre 2010 y 2020, en idioma portugués, español e inglés, de enfoque cualitativo o cuantitativo, con pacientes bajo tratamiento hemodialítico por insuficiencia renal crónica, que estuvieran centrados en el trabajo, empleo o productividad. Resultados Los 18 estudios incluidos en la revisión muestran el impacto del tratamiento hemodialítico en la relación con el trabajo y las razones asociadas al desempleo. Estas razones incluyen características sociodemográficas, debilidad física, tratamiento y apoyo familiar y del empleador. Conclusión Después del inicio de la hemodiálisis, se observa la capacidad funcional de los pacientes comprometida, tanto la física como la psicológica, por lo que los cambios en los hábitos de vida se hacen necesarios como consecuencia de las restricciones impuestas por la insuficiencia renal crónica y de la reducción de la productividad.

Abstract Objective To analyze the scientific evidence on the impact of hemodialysis treatment on the work of patients with chronic kidney disease. Methods This is a scoping review carried out through searches in five databases: PubMed, LILACS, CINAHL, PsyInfo and Scopus. We included studies published between 2010 and 2020, in Portuguese, Spanish and English, with a qualitative or quantitative approach, with patients undergoing hemodialysis for chronic kidney failure, who focused on work, employment or productivity. Results The 18 studies included in the review show the impact of hemodialysis treatment on the relationship with work and the reasons associated with unemployment. Such reasons involve sociodemographic characteristics, physical weakness, treatment and family and employer support. Conclusion After starting hemodialysis, we identified impairment in patients' functional capacity, both physical and psychological, requiring changes in life habits due to restrictions imposed by chronic kidney disease and decreased productivity.

Ensino remoto emergencial na pós-graduação stricto sensu durante a pandemia da covid-19: estudo de reflexão* / Docencia remota de emergencia en posgrado stricto sensu durante la pandemia de covid-19: estudio de reflexión / Emergency remote teaching in stricto sensu graduate courses during the covid-19 pandemic: a reflection study

Objetivo: refletir sobre o ensino remoto, utilizado na pandemia da covid-19, na pós-graduação stricto sensu no contexto da universidade. Método: estudo de reflexão, apoiado em levantamento bibliográfico que permitiu o reconhecimento do predomínio do enfoque técnico, analisado à luz de autores cujo referencial teórico articula a educação e a universidade às relações sociais. Resultados: a análise do ensino remoto demanda uma investigação acerca da sua relação com mudanças que vêm se processando na universidade no cenário neoliberal, valorizando projetos de educação e sociedade com foco mercadológico, influenciando a produção do conhecimento, a formação do pesquisador e do professor da educação superior. Conclusão: ultrapassar a dimensão técnica para a apropriação da dimensão ético-política presente no ensino remoto e nos seus possíveis desdobramentos pós-pandêmico é fundamental, pois o potencial do ato educativo, em termos do encontro entre professor e aluno e da apropriação do conhecimento, não é efetivamente alcançado no ensino remoto.

Objective: to reflect on remote teaching, used during the covid-19 pandemic, in stricto sensu graduate studies in the university context. Method: this is a reflection study, supported by a bibliographical survey that allowed the recognition of the predominance of the technical focus, analyzed in the light of authors whose theoretical framework articulates education and university with social relations. Results: the analysis of remote teaching demands an investigation into its relationship with changes that have been taking place at universities in the neoliberal scenario, valuing education and society projects with a marketing focus, influencing knowledge production, researcher and professor training. Conclusion: going beyond the technical dimension to appropriating the ethical-political dimension present in remote teaching and its possible post-pandemic developments is fundamental, as the educational act's potential, in terms of the meeting between professor and student and appropriation of knowledge, is not effectively achieved in remote teaching.

Objetivo: reflexionar sobre la enseñanza a distancia, utilizada durante la pandemia de covid-19, en los estudios de posgrado stricto sensu en el contexto universitario. Método: se trata de un estudio de reflexión, sustentado en un levantamiento bibliográfico que permitió reconocer el predominio del enfoque técnico, analizado a la luz de autores cuyo marco teórico articula la educación y la universidad con las relaciones sociales. Resultados: el análisis de la enseñanza a distancia exige una investigación sobre su relación con los cambios que se vienen produciendo en la universidad en el escenario neoliberal, valorar proyectos de educación y sociedad con enfoque de marketing, incidiendo en la producción de conocimiento, la formación de investigadores y docentes de educación superior. Conclusión: ir más allá de la dimensión técnica para apropiarse de la dimensión ético-política presente en la enseñanza a distancia y sus posibles desarrollos pospandemia es fundamental, ya que las potencialidades del acto educativo, en cuanto al encuentro entre docente y alumno y la apropiación del conocimiento, no se logra efectivamente en la enseñanza remota.

Clinical and sociodemographic factors associated with the quality of life of children and adolescents with type 1 diabetes / Factores clínicos y sociodemográficos asociados a la calidad de vida de niños y adolescentes con diabetes tipo 1 / Fatores clínicos e sociodemográficos associados à qualidade de vida do público infantojuvenil com diabetes tipo 1

ABSTRACT Objective: To analyze clinical and sociodemographic factors associated with the health-related quality of life of children and adolescents with type 1 Diabetes Mellitus. Method: A quantitative, cross-sectional and analytical study, developed in a municipality in northeastern Brazil, between March and September 2021, with 81 children/adolescents with type 1 Diabetes Mellitus and their guardians/caregivers. A questionnaire containing sociodemographic and clinical variables and two quality of life instruments were used. Descriptive and inferential analysis was carried out. Results: Adolescents whose parents had a family income greater than a minimum wage had a lower prevalence of impaired quality of life when compared to those with a lower income. Adolescents with time since diagnosis of less than four years had a satisfactory quality of life, and children aged 8 to 12 years who self-administered insulin had a lower prevalence of high quality of life compared to those who did not. Conclusion: Adolescents with a family income of less than a minimum wage, diagnosis time of more than four years and children aged 8-12 who self-administer insulin need greater professional support to have a better quality of life.

RESUMEN Objetivo: Analizar los factores clínicos y sociodemográficos asociados a la calidad de vida relacionada con la salud de niños y adolescentes con Diabetes Mellitus tipo 1. Método: Estudio cuantitativo, transversal y analítico, desarrollado en un municipio del Nordeste brasileño, entre marzo y septiembre de 2021, con 81 niños/adolescentes con Diabetes Mellitus tipo 1 y sus tutores/cuidadores. Se utilizó un cuestionario que contenía variables sociodemográficas y clínicas y dos instrumentos de calidad de vida. Se realizó análisis descriptivo e inferencial. Resultados: los adolescentes cuyos padres tenían un ingreso familiar superior a un salario mínimo tuvieron una menor prevalencia de deterioro de la calidad de vida en comparación con aquellos con menores ingresos. Los adolescentes con un tiempo de diagnóstico menor a cuatro años tuvieron una calidad de vida satisfactoria, y los niños de 8 a 12 años que se autoadministraron insulina tuvieron una menor prevalencia de alta calidad de vida en comparación con los que no lo hicieron. Conclusión: Los adolescentes con ingreso familiar menor a un salario mínimo, tiempo de diagnóstico mayor a cuatro años y niños de 8 a 12 años que se autoadministran insulina necesitan mayor apoyo profesional para tener una mejor calidad de vida.

RESUMO Objetivo: Analisar os fatores clínicos e sociodemográficos associados à qualidade de vida relacionada à saúde de crianças e adolescentes com Diabetes Mellitus tipo 1. Método: Estudo quantitativo, transversal e analítico, desenvolvido em um município do Nordeste brasileiro, entre março e setembro de 2021, com 81 crianças/adolescentes com Diabetes Mellitus tipo 1 e seus responsáveis/cuidadores. Utilizaram-se um questionário contendo as variáveis sociodemográficas e clínicas e dois instrumentos de qualidade de vida. Realizou-se análise descritiva e inferencial. Resultados: Adolescentes cujos pais tinham renda familiar superior a um salário mínimo apresentaram prevalência menor de qualidade de vida prejudicada, quando comparados àqueles com renda inferior. Adolescentes com tempo de diagnóstico menor que quatro anos apresentaram qualidade de vida satisfatória, e crianças de 8 a 12 anos que faziam autoaplicação de insulina apresentaram prevalência menor de qualidade de vida alta em relação às que não realizavam. Conclusão: Adolescentes com renda familiar inferior a um salário mínimo, tempo de diagnóstico superior a quatro anos e crianças de 8-12 anos que realizam autoaplicação de insulina necessitam de maior suporte profissional para ter melhor qualidade de vida.

Perfil social e clínico de crianças e adolescentes com diabetes mellitus tipo 1 / Perfil social y clínico de niños y adolescentes con diabetes mellitus tipo 1 / Social and clinical profile of children and adolescents with type 1 diabetes mellitus

Objetivo: identificar o perfil social e clínico de crianças e adolescentes com diabetes mellitus tipo 1. Método: pesquisa quantitativa, transversal e descritiva, desenvolvida com 81 responsáveis de crianças e adolescentes com diabetes mellitus tipo 1 entre março e setembro/2021, em dois centros de referência da Paraíba. A análise descritiva foi realizada com auxílio do software Statistical Package for the Social Science, versão 18. Resultados: predominantemente, os acompanhantes das crianças e adolescentes eram as próprias mães, 90,1%, e cerca de 40% viviam com renda familiar menor que um salário mínimo. Entre as crianças e adolescentes, 54% apresentaram valores elevados de hemoglobina glicada, mesmo estando em tratamento; 65,4% indicaram desconhecimento na forma correta de armazenamento da insulina, e 77,6% possuía lipohipertrofia. Conclusão: foram preponderantes a vulnerabilidade socioeconômica e o manejo clínico ineficaz do diabetes mellitus tipo 1 em crianças e adolescentes.

Objective: to identify the social and clinical profile of children and adolescents with type 1 diabetes mellitus. Method: quantitative, cross-sectional and descriptive research, developed with 81 guardians of children and adolescents with type 1 diabetes mellitus between March and September/2021, in two reference centers in Paraiba. The descriptive analysis was performed using the Statistical Package for the Social Science software, version 18. Results: predominantly, the companions of the children and adolescents were the mothers themselves, 90.1%, and about 40% lived with family income lower than a minimum wage. Among the children and adolescents, 54% had high glycated hemoglobin values, even though they were undergoing treatment; 65.4% indicated ignorance of the correct form of insulin storage, and 77.6% had lipohypertrophy. Conclusion: socioeconomic vulnerability and ineffective clinical management of type 1 diabetes mellitus in children and adolescents were predominant.

Objetivo: identificar el perfil social y clínico de niños y adolescentes con diabetes mellitus tipo 1. Método: investigación cuantitativa, transversal y descriptiva, realizada con 81 cuidadores de niños y adolescentes con diabetes mellitus tipo 1 entre marzo y septiembre/2021, en dos centros de referencia en Paraíba. El análisis descriptivo fue realizado mediante el software Statistical Package for Social Science, versión 18. Resultados: predominantemente, los acompañantes de los niños y adolescentes eran sus madres, el 90,1%, y cerca del 40% vivían con renta familiar inferior a un salario mínimo. Entre los niños y adolescentes, el 54% presentaba niveles elevados de hemoglobina glucosilada, a pesar de estar en tratamiento; El 65,4% indicó desconocer la forma correcta de almacenar la insulina y el 77,6% presentaba lipohipertrofia. Conclusión: predominó la vulnerabilidad socioeconómica y el manejo clínico ineficaz de la diabetes mellitus tipo 1 en niños y adolescentes.

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.

Tradução e Adaptação Cultural do School Companion Sensory Profile 2 para Crianças e Jovens Brasileiros / Translation and Cultural Adaptation of the School Companion Sensory Profile 2 for Brazilian Children and Youths

RESUMO: Este estudo objetivou adaptar culturalmente, verificar a confiabilidade e sugerir um escore normativo do School Companion Sensory Profile 2 (SCSP-2) para crianças e jovens brasileiros de 3 a 14 anos e 11 meses. O SCSP-2 foi adaptado culturalmente para o Brasil seguindo as etapas de tradução inicial (dois tradutores independentes), tradução conciliada (dois integrantes do comitê técnico), análise de equivalência (quatro especialistas em integração sensorial), retrotradução (dois tradutores de língua materna inglesa), aprovação da autora e pré-teste. O pré-teste verificou a clareza e a compreensão (desdobramento cognitivo/validade de face) e a confiabilidade (equivalência interexaminadores, consistência interna e reprodutibilidade) da versão traduzida, com a participação de 74 professores que responderam ao questionário referente a 146 crianças. Os itens apresentaram índice de concordância acima de 75% no desdobramento cognitivo. A equivalência interexaminadores e teste-reteste apresentaram K ≥ 0,88 em todos os itens pesquisados. Observaram-se valores aceitáveis de consistência interna em quase todas as áreas sensoriais, quadrantes de procura sensorial e sensibilidade sensorial e no fator escolar 2. Os escores preliminares brasileiros são distintos dos americanos. O SCSP-2 adaptado para o Brasil apresenta evidências de validade baseada no conteúdo, além de boa consistência interna, possibilitando identificar problemas de processamento sensorial em crianças e jovens brasileiros.

ABSTRACT: This study aimed to adapt culturally, verify the reliability, and suggest a normative score for the School Companion Sensory Profile 2 (SCSP-2) for Brazilian children and youths aged 3 to 14 years and 11 months. The SCSP-2 was culturally adapted for Brazil following the steps of initial translation (two independent translators), reconciled translation (two members of the technical committee), equivalence analysis (four experts in sensory integration), back-translation (two English mother tongue translators), author approval and pre-test. The pre-test verified the clarity and understanding (cognitive unfolding/face validity) and reliability (inter-examiner equivalence, internal consistency, and reproducibility) of the translated version, with the participation of 74 teachers who answered the questionnaire referring to 146 children. The items showed an agreement rate above 75% in cognitive unfolding/face validity. The inter-examiner and test-retest equivalence showed K ≥ 0.88 in all items surveyed. Acceptable internal consistency values were observed in almost all sensory areas, quadrants of sensory seeking and sensory sensitivity, and in the school factor 2. The Brazilian preliminary scores are different from the American ones. The SCSP-2 adapted for Brazil presents evidence of content-based validity and good internal consistency, making it possible to identify sensory processing problems in Brazilian children and youths.

Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations / Cinco dicas para realizar coleta remota de dados qualitativos em tempos de COVID: considerações teóricas e pragmáticas / Cinco sugerencias para realizar recolección remota de datos cualitativos en tiempos de COVID: consideraciones teóricas y pragmáticas

ABSTRACT Objective: To provide five methodological and pragmatic tips for conducting remote qualitative data collection during the context of the COVID-19 pandemic. Method: The tips presented in this article are drawn from insights of our own experiences as researchers conducting remote qualitative research and from the evidence from the literature on qualitative methods. The relevant literature was identified through searches using relevant keywords in the following databases: CINAHL, PubMed, SCOPUS, and Web of Science. Searches were limited to articles in English and Portuguese, published from 2010 to 2021, to ensure a current understanding of the phenomenon. Results: Five tips are provided: 1) Pay attention to ethical issues; 2) Identify and select potential participants; 3) Choose the type of remote interview; 4) Be prepared to conduct the remote interview; and 5) Build rapport with the participant. Conclusion: Despite the challenges in conducting remote data collection, strengths are also acknowledged and our experience has shown that it is feasible to recruit and interview participants remotely. The discussions presented in this article will benefit, now and in the future, other research teams who may consider collecting data for their qualitative studies remotely.

RESUMEN Objetivo: Proporcionar cinco consejos metodológicos y pragmáticos para el manejo de la recogida de datos cualitativos durante el contexto de la pandemia de COVID-19. Método: Los consejos presentados en este artículo son extraídos de insights de nuestras propias experiencias como investigadores que realizan investigaciones cualitativas remotas y de la evidencia de la literatura sobre métodos cualitativos. La literatura relevante fue identificada a través de búsquedas utilizando palabras clave relevantes en las siguientes bases de datos: CINAHL, PubMed, SCOPUS y Web of Science. Las búsquedas se limitaron a artículos en inglés y portugués publicados entre 2010 y 2021 para asegurar una comprensión actual del fenómeno. Resultados: Se ofrecen cinco consejos: 1) Preste atención a las cuestiones éticas; 2) Identifique y seleccione potenciales participantes; 3) Escoja el tipo de entrevista remota; 4) Esté preparado para coordinar la entrevista remota; y 5) Promueva el vínculo con su participante. Conclusiones: A pesar de los desafíos en el manejo de la recogida remota de datos, también se reconocen las fortalezas y nuestra experiencia ha demostrado que es viable reclutar y entrevistar participantes remotamente. Las discusiones presentadas en este artículo beneficiarán, ahora y en el futuro, a otros equipos de investigación que puedan considerar recopilar datos para sus estudios cualitativos de forma remota.

RESUMO Objetivo: Fornecer cinco dicas metodológicas e pragmáticas para conduzir coleta remota de dados qualitativos durante o contexto da pandemia de COVID-19. Método: As dicas apresentadas neste artigo são extraídas de insights de nossas próprias experiências como pesquisadores conduzindo pesquisas qualitativas remotas e das evidências da literatura sobre métodos qualitativos. A literatura relevante foi identificada por meio de pesquisas usando palavras-chave relevantes nas seguintes bases de dados: CINAHL, PubMed, SCOPUS e Web of Science. As buscas foram limitadas a artigos em inglês e português publicados de 2010 a 2021 para garantir uma compreensão atual do fenômeno. Resultados: Cinco dicas são fornecidas: 1) Esteja atento às questões éticas; 2) Identifique e selecione potenciais participantes; 3) Escolha o tipo de entrevista remota; 4) Esteja preparado para conduzir a entrevista remota; e 5) Estabeleça previamente vínculo com o participante. Conclusão: Apesar dos desafios na condução da coleta remota de dados, os pontos fortes também são reconhecidos e nossa experiência tem mostrado que é viável recrutar e entrevistar participantes remotamente. As discussões apresentadas neste artigo beneficiarão, atualmente e no futuro, outras equipes de pesquisa que possam considerar a coleta de dados para seus estudos qualitativos remotamente.

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

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

Evidence of validity of internal structure of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12) in Brazilian adolescents with chronic health conditions.

This study explored the evidence of validity of internal structure of the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing Scale (FACIT-Sp-12) in Brazilian adolescents with chronic health conditions. The study involved 301 Brazilian adolescents with cancer, type 1 diabetes mellitus, or cystic fibrosis. Exploratory Factor Analysis (EFA), Confirmatory Factor Analysis (CFA), and Item Response Theory (IRT) were used to test the internal structure. Reliability was determined with Cronbach's Alpha and McDonald's Omega. The EFA suggested a one-dimensional scale structure in contrast to the original 2-factor model or the 3-factor model which were not reproduced in the current CFA. All quality indicators for the EFA one-factor exceeded the required criteria (FDI = 0.97, EAP = 0.97, SR = 3.96 and EPTD = 0.96, latent GH = 0.90. and the observed GH = 0.85). The FACIT-Sp-12 for adolescents yielded strong evidence for a 1-factor model and with good reliability.

Parental psychosocial needs in Brazilian paediatric intensive care units.

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