Open Access
'God gives me hope!': hospitalized children's perception of the influence of religion in coping with chronic illness
(Elsevier, 2024) Alvarenga, Willyane de Andrade; Cruz, Isabela Emanuela Cantanhêde da; Leite, Ana Carolina Andrade Biaggi; Nascimento, Lucila; Machado, Júlia Rezende; Santos, Louise Bittencourt Paes Abreu dos; Lima, Regina Aparecida Garcia de; Ciencias de la Salud; Osasun Zientziak
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.
Open Access
The experience of hope in families of children and adolescents living with chronic illness: a thematic synthesis of qualitative studies
(Wiley, 2019-11-25) Leite, Ana Carolina Andrade Biaggi; García Vivar, Cristina; Neris, Rhyquelle Rhibna; Alvarenga, Willyane de Andrade; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak; Institute of Smart Cities - ISC
Aim To synthesize qualitative studies on the experience of hope in families of children and adolescents living with chronic illness. Background Hope is multidimensional, dynamic, and varies according to experienced events, cultural environments and stage of life. The qualitative synthesis of the experience of hope in the paediatric population with chronic conditions is scarce. Design Thematic synthesis of qualitative studies. Data sources A systematic literature search in PubMed, CINAHL, LILACS, PsycINFO, Scopus, and Web of Science was performed supplemented by manual search strategies. Thirty-one studies from fifteen countries, published between 1981-2018, were included. Findings Findings were integrated into an analytical theme "FAMILY HOPE: KEEPING THE DAY-TO-DAY BALANCE", encompassing the following five descriptive themes: Uncertainty; Support; Information; Between "dark thoughts" and positive thoughts; and Hoping to go back to normality. Conclusion This thematic synthesis brings a new dimension of hope among families of children and adolescents living with chronic illness. "Family Hope" highlights the influence of the relationships between relatives and the chronically ill child in the balance of hope. It is recommended that health professionals use a family-focused approach to support these families. Impact Shifting the focus to a family dimension of hope is a promising pursuit that has the potential to inform future nursing practices to support the experiences of families living with chronic illness in the paediatric context. A better understanding of the role and characteristics of family hope will promote the development of more effective interventions for families to adapt to long-term paediatric conditions.
Open Access
School reintegration from the perspective of children and adolescents with chronic illnesses
(Universidade Estadual de Maringá, 2023-12-08) Leite, Ana Carolina Andrade Biaggi; Sabatini, Arielly Fernanda Bávaro; Alvarenga, Willyane de Andrade; Neris, Rhyquelle Rhibna; Nunes, Michelle Darezzo Rodrigues; Lucca, Milena de; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: analizar la experiencia de niños y adolescentes con enfermedades crónicas en el proceso de reinserción escolar. Método: estudio cualitativo, de naturaleza descriptiva-exploratoria, conducido en una enfermería pediátrica de un hospital público del interior paulista, con 15 niños y adolescentes con enfermedades crónicas, que interrumpieron la frecuencia escolar por demandas asociadas a la terapéutica de la enfermedad. Fueron conducidas entrevistas semiestructuradas y los datos sometidos a los procedimientos del análisis temático inductivo. El estudio siguió todos los preceptos éticos (dictamen nº. 2.911.290). Resultados: con base en los análisis fueron construidos cuatro temas: (1) "Impacto social, académico y emocional de la hospitalización"; (2) "Rutina en el hospital: estrategias para recuperar el rendimiento escolar"; (3) "Desafíos y alegrías consecuentes al retorno a la escuela"; y (4) "Redes de apoyo al niño y al adolescente con enfermedad crónica en el proceso de reinserción escolar". Conclusión: niños y adolescentes con enfermedades crónicas que experimentan la reinserción escolar necesitan apoyo en este proceso, principalmente para mantener la conexión con la escuela durante el alejamiento y en la fase de reinserción. Los resultados de esta investigación pueden ayudar a los profesionales de salud en la planificación del cuidado, considerando las necesidades académicas de esa población.
Open Access
Children in outpatient follow-up: perspectives of care identified in interviews with puppet
(Universidade Federal do Rio Grande do Sul, 2019-02-18) Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Machado, Júlia Rezende; Luchetta, Letícia Falsarella; La Banca, Rebecca Ortiz; Sparapani, Valéria de Cássia; Neris, Rhyquelle Rhibna; Cartagena-Ramos, Denisse; Fuentealba-Torres, Miguel; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: Analizar la perspectiva del niño acerca de su condición de salud y experiencias relacionadas al a atención ambulatoria hospitalar y el uso de los títeres como estrategia lúdica para recoger datos. Método: Estudio cualitativo, incluyó a 16 niños diagnosticados con enfermedades crónicas reclutadas en un ambulatorio pediátrico del interior paulista. Los datos fueron recolectados en octubre de 2016 mediante entrevista semiestructurada y se utilizó el fantoche como recurso facilitador en la comunicación. Las entrevistas fueron analizadas por medio del análisis temático inductiva. Resultados: Se construyeron cuatro temas: "niño en seguimiento ambulatorio: ¿qué saben?"; "Emociones que atraviesan el seguimiento ambulatorio"; "el ambulatorio de mis sueños" y; "la utilización de los títeres y el universo lúdico de la entrevista". Consideraciones finales: Fue posible identificar el motivo y los principales sentimientos del seguimiento ambulatorio, así como las preferencias, de los niños, relacionados con los aspectos físicos y estructurales del ambulatorio.
Open Access
Navigating the challenges and resilience in the aftermath of the Covid-19 pandemic in adolescents with chronic diseases: a scoping review
(MDPI, 2024-08-27) Machado Kayzuka, Giovanna Cristina; Seccarecio, Isabela Helena; Lucca, Milena de; Neris, Rhyquelle Rhibna; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Bortoli, Paula Saud de; Pinto, Manoela Henriques; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Background/Objectives: The COVID-19 pandemic has profoundly affected the lives of adolescents worldwide, especially those living with chronic diseases. This study aims to explore the impact of the COVID-19 pandemic on the daily lives of adolescents with chronic diseases. Methods: This is a scoping review that follows the guidelines proposed by JBI. Eligibility criteria include articles focusing on adolescents aged 10 to 19 during the COVID-19 pandemic, regardless of chronic diseases. Searches were performed in PUBMED, LILACS, CINAHL, SCOPUS, grey literature, and manual searches in March 2024. Results: This review is composed of 35 articles. The analysis revealed two main categories: (1) Adolescents facing social isolation, school closure, and new family interactions, striving to reinvent themselves, and (2) Chasing the best decision: following up the chronic disease while fighting the COVID-19 pandemic. These categories encompass subcategories highlighting changes in social and family interactions and lifestyle habits. The findings suggest a multifaceted interaction of factors influencing adolescents¿ well-being, including improved family bonding, heightened disease management, and increased stress and strains on resources. Conclusions: This review emphasizes the importance of long-term follow-up and social inclusion efforts for adolescents with chronic diseases and their families, addressing their unique needs during public health crises.