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
Use of telehealth among cancer survivors: a scoping review
(Mary Ann Liebert, Inc., 2023) Irurita Morales, Paula; Soto Ruiz, María Nelia; San Martín Rodríguez, Leticia; Escalada Hernández, Paula; García Vivar, Cristina; Ciencias de la Salud; Osasun Zientziak
Background: Long-term cancer survivors have specific needs that are frequently neglected. Telehealth, as a new form of health care, can benefit this growing population.Objective: To identify, analyze, and synthesize the existing evidence on the use of telehealth in the care of cancer survivors after the end of treatment.Methods: A scoping review was conducted in the databases PubMed, CINAHL, COCHRANE, SCIELO, DIALNET, and LILACS and reference institutions in cancer.Results: The initial search yielded 406 publications with 59 articles meeting the eligibility criteria. There are different types of telehealth (video calls, phone calls, websites, mobile applications, and short message services) used for the care of cancer survivors. Most telehealth interventions focus on improving the physical and mental spheres of quality of life in the extended survival phase (from 1 to 3 years postdiagnosis), with only two articles (3%) on long-term cancer survivors (>5 years postdiagnosis). Survivors are satisfied with telehealth interventions, noting the importance of improving comprehensibility, personalization of the platforms, and the lack of excessive information included.Conclusions: Telehealth is a feasible modality for cancer survival care. The scarcity of interventions aimed at long-term survivors stands out, as does the general neglect of the social and spiritual spheres of quality of life.Implications for Practice: Telehealth platforms must adapt their content, format, and items to the preferences reported by the survivors.
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.

García Vivar, Cristina

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