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
Compassion fatigue: a comprehensive discussion on its development and repercussions among oncology nurses
(Grune & Stratton, 2024) Santos, Louise Bittencourt Paes Abreu dos; Alvarenga, Willyane de Andrade; Leite, Ana Carolina Andrade Biaggi; Neris, Rhyquelle Rhibna; Lima, Regina Aparecida Garcia de; Montigny, Francine de; Verdon, Chantal; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objectives: This study aimed to discuss how compassion fatigue (CF) develops and its repercussions on the personal and professional lives of oncology nurses. Methods: A discursive article, with systematic searches were performed in seven databases to find publications on CF in oncology nurses. Results: So as to better organize the findings, three categories were developed to present and discuss issues related to CF: (1) Characteristics of CF and its developments: describes the components related to CF and the manifestation of this phenomenon; (2) Repercussions of compassion fatigue: reports on the impact of CF on the personal and professional life of oncology nurses; and (3) Resources for dealing with compassion fatigue: lists interventions, sources of support, professional personal training, qualified nursing care in the face of adversity, and gratitude and recognition. Conclusion: the factors that trigger or protect CF are multifactorial, with the need for collective and individual interventions as a way of helping oncology nurses to protect themselves, to avoid or manage this phenomenon. CF has a direct clinical impact on the life of the oncology nurse, causing several changes. It also indirectly impacts the patient's life clinically, as it is a phenomenon that has repercussions on the provision of care. Implications for Nursing Practice: CF affects the personal and professional lives of oncology nurses, so nurses need to seek resources to deal with it. Nursing staff employers and managers can use the evidence from this research to help nurses manage and protect themselves from compassion fatigue.
Open Access
Quality of life of male breast cancer survivors: a systematic review
(Wiley, 2025-04-30) López Wilson, Arleen; Leite, Ana Carolina Andrade Biaggi; Soto Ruiz, María Nelia; Escalada Hernández, Paula; García Vivar, Cristina; Ciencias de la Salud; Osasun Zientziak
Introduction: Breast cancer treatments signifcantly infuence the quality of life of cancer survivors. While most studies havefocused on female breast cancer survivors, data on the quality of life of men who have undergone medical, surgical or radiologicaltreatments for breast cancer are limited. Objective: To evaluate the quality of life of male breast cancer survivors. Methods: A systematic review was conducted according to the PRISMA statement with a search in four databases: PubMed,Embase, Cochrane and Web of Science. We screened and extracted data and assessed the methodological quality of the studies viathe Cochrane RoB-2 and ROBINS-I tools for randomised clinical trials and follow-up studies, respectively. Te data werepresented in a narrative synthesis format. Results: In total, 993 records were identifed, of which three studies were included for analysis: two randomised clinical trials andone cohort study. Te interventions in the randomised clinical trials involved evaluating the impact of endocrine therapy and theimplementation of online physical training. Although there was a reduction in the overall quality of life during cancer treatment,patients who received tamoxifen monotherapy did not report a clinically signifcant change in their sexual function. Additionally,moderate exercise was shown to improve physical health and enhance social well-being. In the cohort study, quality of life andsymptom burden were evaluated in men with breast cancer treated with endocrine therapies at the time of diagnosis via symptomassessment scales. Conclusions: Male breast cancer survivors experience a decrease in quality of life during and after treatment. While tamoxifenmonotherapy preserves sexual function, moderate-intensity physical rehabilitation signifcantly improves both quality of life andsocial functioning. Te limited number of studies included in this review highlights the need for further research to address thephysical, psychological and social needs of male breast cancer survivors.
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
'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 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
"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.
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.