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.
Embargo
Quality of life of adolescents and young adult survivors of childhood cancer: a qualitative study
(Wiley, 2024-11-11) Neris, Rhyquelle Rhibna; Papathanassoglou, Elizabeth; Leite, Ana Carolina Andrade Biaggi; García Vivar, Cristina; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak; Institute of Smart Cities - ISC
Aims: to analyse how adolescents and young adults who survived childhood cancer experience their quality of life and to ex-plore their meanings and conceptualisations of quality of life. Design: narrative design following Squire's method. Methods: in-person and virtual recruitment, due to the global COVID-19 pandemic, was carried out in Brazil between May and November 2021. Eighteen semi-structured virtual interviews were conducted with childhood cancer survivors. These data wereanalysed using reflexive thematic analysis and employing a triangulation of investigators. Results: four subthemes were identified, encompassing participants' perceptions and meanings of quality of life. Through thereflection and synthesis of these subthemes, a central theme emerged entitled "New self", capturing the profound impact of thecancer and survival experience on every aspect of the self, along with participants' sense of having gained "a new life" and a "sec-ond chance". Conclusion: the study provides a rich and nuanced understanding of quality of life for childhood cancer survivors. The results highlight that after all the changes in life due to cancer, integrating the new self becomes a central aspect of quality of life forsurvivors. Implications for the Profession and/or Patient Care: recognising the profound shifts in self-perception that survivors of childhood cancer undergo, nurses should engage early in empowering patients and families, offering education, space and sup-port to help adolescents and young adults grow throughout their journey. Impact: the richness and depth inherent in qualitative data on quality of life can inform the development of care standards and health policies for survivors, guide the allocation of strategic resources and shape the development of plans and interventions focusing on childhood cancer survivors. Reporting method: the COREQ checklist was used. Patient or Public: no patient or public contribution.
Open Access
"Tiempos de guerra y tiempos de paz incierta": narrativas de padres de supervivientes de cáncer infantojuvenil
(Universidad de São Paulo, 2024-08-30) Neris, Rhyquelle Rhibna; Leite, Ana Carolina Andrade Biaggi; Papathanassoglou, Elizabeth; García Vivar, Cristina; Souza, Juliana de; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak; Institute of Smart Cities - ISC
Objetivo: analizar los significados que les atribuyen los padres a la supervivencia prolongada y permanente del cáncer infantojuvenil. Método: estudio narrativo cualitativo, desarrollado con padres de adolescentes y adultos jóvenes que sobrevivieron al cáncer infantojuvenil. El reclutamiento y la recogida de datos se basó en enfoques virtuales y presenciales. Los datos fueron recolectados a través de entrevistas semiestructuradas y analizados según análisis temático reflexivo. Resultados: se incluyeron en el estudio un total de diez padres. Se construyeron dos síntesis narrativas temáticas: 'Tiempos de guerra'; y 'Tiempo de paz incierta', con sus respectivos subtemas. El diagnóstico de cáncer marca el inicio de tiempos de guerra en la vida de los padres. Viven el tratamiento del cáncer como 'altibajos' con amenazas potenciales para la vida de sus hijos. Después llega el 'Tiempo de paz incierta' y se restablece el equilibrio de la unidad familiar. Pero el miedo a la recidiva torna incierta la paz familiar, y mantenerla implica un control constante y prestar atención a los signos y síntomas de una posible nueva batalla. Conclusión: los resultados destacan la experiencia de ser padre de un superviviente de cáncer infantil y pueden aplicarse para desarrollar modelos de atención centrados en la familia de los supervivientes.
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
"Times of war and time of uncertain peace": narratives of parents of childhood cancer survivors
(Universidad de São Paulo. Escola de Enfermagem de Riberirão Preto, 2024-08-30) Neris, Rhyquelle Rhibna; Leite, Ana Carolina Andrade Biaggi; Papathanassoglou, Elizabeth; García Vivar, Cristina; Souza, Juliana de; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objective: to analyze the meaning attributed by parents to the extended and permanent survival of childhood cancer. Method: qualitative narrative inquiry, developed with parents of adolescents and young adults who survived childhood cancer. Recruitment and data collection involved virtual and in-person approaches. The data were collected through semi-structured interviews. Data were analyzed according to reflective thematic analysis. Results: a total of ten parents were included in the study. Two thematic narrative syntheses were constructed: 'Times of war'; and 'Time of uncertain peace', with their respective sub-themes. The cancer diagnosis marks the beginning of times of war in the parents¿ lives. They experience cancer treatment as 'highs and lows' with potential threats to their children¿s lives. After that, 'Time of uncertain peace' are reached, and the balance of the family unit is reestablished. However, the fear of recurrence makes the family peace uncertain, and its maintenance requires constant vigilance and attention to the signs and symptoms of a possible new battle. Conclusion: the results highlight the experience of being a parent of a childhood cancer survivor and can be applied to develop models of care centered on the survivors' family.
Open Access
"What I was and what I am": a qualitative study of survivors' experience of urological cancer
(Elsevier, 2020-02-01) Neris, Rhyquelle Rhibna; Leite, Ana Carolina Andrade Biaggi; Nascimento, Lucila; García Vivar, Cristina; Zago, Márcia Maria Fontão; Ciencias de la Salud; Osasun Zientziak; Institute of Smart Cities - ISC
Purpose: Most qualitative studies do not explore experience throughout the urologic cancer survival trajectory. Moreover, the evidence of the experience of cancer survivors that focuses on the contextual aspects of culture is scarce in oncology literature. This study aimed to analyze the survival experience of urological cancer from the perspective of men. Method: This was a narrative research based on the concepts of culture derived from the interpretative medical anthropologic approach. Semi-structured interviews were conducted with 10 male survivors of urological cancer at different survival seasons. Seven participants agreed to a second interview, which resulted in 17 interviews. The data were analyzed using a five-phase thematic analysis approach. The findings are presented as narrative syntheses. The standards for reporting qualitative research (SPQR) was used in this study. Results: Two narrative syntheses were constructed: "The journey of urological cancer: discovering oneself as a survivor" and "What I was and what I am today": the disruption on the body and life. The narrative synthesis shows that survivors undergo transitions of identity from being healthy men to wrecked men. The survivors tried to present themselves as normal men to keep their masculinity intact. However, the experience of survival constituted a process of liminality and biographical disruption. Conclusion: The experience of surviving urological cancer has highlighted the physical, emotional, and social challenges experienced by these male survivors. It is recommended to oncology nurses that nursing care should be planned along survival seasons considering the survivor's individual and subjective experiences.
Open Access
The experience of health-related quality of life in extended and permanent cancer survivors: a qualitative systematic review
(Wiley, 2020-07-13) Neris, Rhyquelle Rhibna; Nascimento, Lucila; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Polita, Naiara Barros; Zago, Márcia Maria Fontão; Ciencias de la Salud; Osasun Zientziak
Objective: This qualitative systematic review aims to synthesize qualitative evidencefrom primary studies on experiencing health-related quality of life (HRQoL) inextended and permanent cancer survivors.Methods: A systematic literature search was performed in PubMed, CINAHL,LILACS, PsycINFO, Scopus, and Web of Science. It followed guidelines from thestatement in the Enhancing Transparency in Reporting the Synthesis of QualitativeResearch (ENTREQ). A quality appraisal of each study was undertaken using the Critical Appraisal Skills Programme. Data synthesis was conducted according to the the-matic synthesis approach. Confidence in each review finding was assessed using theConfidence in the Evidence from Reviews of Qualitative research (Grade-CERQual).Results: Twenty-four studies from nine countries were selected for the final sample.Analysis of the studies' results allowed for the construction of nine descriptivethemes that were interpreted into three analytical themes: "The body as a represen-tation of HRQoL," "Living through and beyond cancer: the re-signification ofHRQoL," and "Employing resources to improve HRQoL." According to the CERQualapproach, moderate confidence estimations were achieved for the results.Conclusions: The themes reflect that the HRQoL experience is re-signified by survivors from the privilege of being alive. This process happens with the support of socialresources, family, hope, and spirituality. Based on the findings, it is suggested thathealth staff should be able to recognize the impact that cancer survival has onHRQoL and develop a care plan that addresses needs to sustain health in these survivors.