Open Access
Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations
(Escola de Enfermagem da Universidad Sao Paulo (Brasil), 2023) Neris, Rhyquelle Rhibna; Papathanassoglou, Elizabeth; Leite, Ana Carolina Andrade Biaggi; García Vivar, Cristina; Montigny, Francine de; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
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.
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
'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.
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
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
The experience of coronaphobia among health professionals and their family members during COVID-19 pandemic: a qualitative study
(Elsevier, 2022) Barreto, Mayckel; Leite, Ana Carolina Andrade Biaggi; García Vivar, Cristina; Nascimento, Lucila; Marcon, Sonia; Ciencias de la Salud; Osasun Zientziak
Background: Coronaphobia is an excessive fear of becoming infected by the COVID-19 virus. Situations of coronaphobia against health professionals have been identified. Therefore, there is a need to develop studies to understand family impact and experience of COVID-19 pandemic and coronaphobia. Aim: To describe the coronaphobia experience of health professionals and of one of their family members during the first wave of the COVID-19 pandemic. Methods: Exploratory qualitative study using narrative inquiry was used. This study was guided by the concept of coronaphobia and Family Systems Nursing as conceptual frameworks. Face-to-face and telephone interviews were conducted from September to November 2020 with 14 health professionals, including nurses and physicians and one of their family members (n = 14). Findings: Three descriptive themes were identified which highlight professional-family dyads' experience of coronaphobia as a reciprocal and relational process. Coronaphobia was demonstrated by unknown or close people, in a disguised or explicit way, and generated suffering in the dyads and in the family unit. Consequently, individual and/or family strategies were developed to allow for the protection of the family system and the maintenance of its functioning. Discussion: This study describes how the dyads of health professionals and their family members identify the experiences of coronaphobia. In addition, it was possible to analyze the repercussions of coronaphobia on the dyad and the strategies they used to deal with it. Conclusions: This study extends understanding about the relationships between the experience of coronaphobia among health professionals and one of their family members and the experience of physical, cognitive and emotional suffering during the COVID-19 pandemic. © 2022
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
Extended and long-term cancer survivorship of childhood survivors: a scoping review of nursing evidence with bibliometric analysis
(Lippincott, Williams & Wilkins, 2024-06-10) Leite, Ana Carolina Andrade Biaggi; Nascimento, Lucila; Neris, Rhyquelle Rhibna; Soto Ruiz, María Nelia; Escalada Hernández, Paula; San Martín Rodríguez, Leticia; García Vivar, Cristina; Ciencias de la Salud; Osasun Zientziak
Background: With the increasing survival rates of childhood cancer, nurses' familiarity with published evidence has become crucial to care for this population and their families throughout the survival process. Objective: to systematically identify and conduct a bibliometric analysis of nursing-related evidence concerning extended and long-term survival of childhood survivors. Methods: a scoping review was conducted using bibliometric analysis with searches performed in the PubMed, CINAHL, SCOPUS, and Web of Science databases. A total of 300 studies on childhood cancer survival within the nursing field were included. Results: the first study on this topic was published in 1975. American and Chinese researchers lead study publications, primarily publishing in nursing journals such as Cancer Nursing. Quantitative designs were prevalent, and the majority of the studies focused on physical late effects, overall quality of life, and survivor follow-up care. Conclusions: this study has allowed us to map and synthesize the bibliometric evidence pertaining to the extended and long-term survivorship of childhood cancer survivors in the nursing field. Consequently, it identifies gaps in knowledge, research trends, and areas necessitating further exploration. Implications for practice: the evidence presented in this review can facilitate academic and clinical discussions, offering a comprehensive synthesis of the published knowledge. More research needs to be developed on the topic, particularly in Central and Latin America, Africa, Southern and Eastern Europe, and in some regions of Asia. Furthermore, the scope of studies should extend beyond late effects and quality of life, encompassing the experience of surviving childhood cancer, including psychosocial and spiritual dimensions.
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
Olas de esperanza familiar: narrativas de las familias en el contexto de la enfermedad crónica pediátrica
(Universidad de São Paulo, Escuela de Enfermería de Ribeirão Preto, 2021) Leite, Ana Carolina Andrade Biaggi; García Vivar, Cristina; Demontigny F.; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: analizar las narrativas sobre la experiencia de esperanza de las familias en el contexto de la enfermedad crónica pediátrica. Método: investigación narrativa que utilizó la Enfermería de Sistemas Familiares como marco conceptual. En este estudio participaron tres familias de niños y adolescentes diagnosticados con enfermedades crónicas complejas, con un total de 10 participantes. La recogida de datos se desarrolló mediante entrevistas familiares con foto-elicitación. Se construyeron y analizaron narrativas familiares siguiendo el análisis temático inductivo con triangulación teórica de los de datos. Resultados: el tema analítico - Olas de esperanza familiar en el contexto de la enfermedad crónica pediátrica - se compone de cuatro tipos diferentes de esperanza: esperanza incierta, esperanza cuidadora, esperanza latente y esperanza expectante. El movimiento a través de estas esperanzas genera una fuerza motriz y dependiente de varios factores: apoyo, información, búsqueda de la normalidad, pensamientos y comparaciones. Conclusión: los resultados destacan la interacción y reciprocidad de los miembros de la unidad familiar, la dinámica de la esperanza, e ilustran los diferentes tipos de esperanza y los factores que los influyen. Este estudio destaca la experiencia de la esperanza como un recurso familiar, en vez de un recurso individual, y apoya a los profesionales de la salud en la planificación del cuidado familiar considerando la esperanza como un recurso familiar esencial y dinámico.