Open Access
Care provided by the father to the child with cancer under the influence of masculinities: qualitative meta-synthesis
(Associação Brasileira de Enfermagem, 2018) Polita, Naiara Barros; Alvarenga, Willyane de Andrade; Leite, Ana Carolina Andrade Biaggi; Araújo, Jeferson Santos; Dos Santos, Paes Abreu; Zago, Márcia Maria Fontão; Montigny, Francine de; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: Sintetizar e interpretar resultados y conclusiones de investigaciones cualitativas sobre la experiencia del padre en el cuidado del hijo con cáncer. Método: Metasíntesis de 16 estudios cualitativos recogidos en seis bases de datos y examinados mediante análisis taxonómica. Resultados: El cáncer infantojuvenil repercute considerablemente en la vida cotidiana del padre, sobre todo con relación al estigma de la enfermedad, al miedo a lo desconocido y al papel social y familiar. Ante la enfermedad y la necesidad de cuidar del hijo, el padre busca rescatar la normalidad en la familia y transita entre comportamientos hegemónicamente masculinos y prácticas reconocidas culturalmente como femeninas. Consideraciones finales: Se puso en evidencia la compleja experiencia paterna influenciada por las masculinidades. Las limitaciones se refieren a la estricta comprensión de las especificidades contextuales de las experiencias por las escasas características de los padres e hijos descritos en los estudios. El conocimiento producido puede llegar a ser útil para promover el compromiso paterno en el cuidado del hijo, así como fortalecerlo y ayudarlo en esta tarea.
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
Metasíntesis sobre el hombre como padre y cuidador de un hijo hospitalizado
(Universidad de São Paulo, 2017) Dos Reis, Susana Maria Garcia; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Araújo, Jeferson Santos; Zago, Márcia Maria Fontão; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: identificar, analizar y sintetizar los resultados de estudios cualitativos primarios que discuten la experiencia del padre en el cuidado al hijo hospitalizado. Método: se trata de metasíntesis cualitativa por medio de la cual fueron analizados 12 artículos, seleccionados en las bases de datos Cumulative Index to Nursing and Allied Health Literature, Literatura Latinoamericana y del Caribe en Ciencias de la Salud, Public Medline, Scopus, PsycINFO y Web of Science, publicados entre 1995 y 2015. Las etapas metodológicas propuestas por Sandelowski y Barroso se utilizaron para sistematizar la revisión, así como conceptos de la antropología de las masculinidades, para análisis y discusión de la síntesis. Resultados: la síntesis fue presentada por dos temas: 1) dilemas paternos - lo que el hombre siente y enfrenta durante la hospitalización del hijo, destacando el involucramiento emocional y cambio en la relación familiar y laboral, y 2) identidades paternas - masculinidades reajustadas ante el adolecer del hijo, que revela marcas identitarias y la paternidad reprimida, en el ambiente hospitalario. Ambos temas ilustran los retos y el reajuste de la identidad paterna. Consideraciones finales: conocer las vivencias del padre durante la hospitalización del hijo y la manera como los desafíos para el reajuste de papeles relativos a la masculinidad puede ampliar el alcance de la enfermería, y de los demás profesionales de salud, alertando sobre la importancia de incluir al padre como protagonista o coadyuvante en el cuidado del niño hospitalizado.
Open Access
'Opportunistic care': a focus group study of nurses' perspective on caring for long-term cancer survivors and their families
(Lippincott, Williams & Wilkins, 2024) Elizondo Rodríguez, Nerea; La Rosa-Salas, Virginia; Leite, Ana Carolina Andrade Biaggi; Domingo-Oslé, Marta; Nascimento, Lucila; García Vivar, Cristina; Ciencias de la Salud; Osasun Zientziak
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.
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
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
"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.