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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
"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
"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.

García Vivar, Cristina

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