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
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
Pain, sleep patterns and health-related quality of life in paediatric patients with cancer
(Wiley, 2019-03-03) Nunes, Michelle Darezzo Rodrigues; Nascimento, Lucila; Fernandes, Ananda Maria; Batalha, Luis; Campos, Catarina de; Gonçalves, Ana; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Lima, Regina Aparecida Garcia de; Jacob, Eufemia; Ciencias de la Salud; Osasun Zientziak
Purpose: To compare sleep and health-related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalization. Method: A prospective comparative study was used to collect data from pediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n=118; 8 to 18 years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72 hours. Results: Almost half of the participants (48,3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. Conclusions: The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalization. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.
Open Access
The experience of health-related quality of life in extended and permanent cancer survivors: a qualitative systematic review
(Wiley, 2020-07-13) Neris, Rhyquelle Rhibna; Nascimento, Lucila; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Polita, Naiara Barros; Zago, Márcia Maria Fontão; Ciencias de la Salud; Osasun Zientziak
Objective: This qualitative systematic review aims to synthesize qualitative evidencefrom primary studies on experiencing health-related quality of life (HRQoL) inextended and permanent cancer survivors.Methods: A systematic literature search was performed in PubMed, CINAHL,LILACS, PsycINFO, Scopus, and Web of Science. It followed guidelines from thestatement in the Enhancing Transparency in Reporting the Synthesis of QualitativeResearch (ENTREQ). A quality appraisal of each study was undertaken using the Critical Appraisal Skills Programme. Data synthesis was conducted according to the the-matic synthesis approach. Confidence in each review finding was assessed using theConfidence in the Evidence from Reviews of Qualitative research (Grade-CERQual).Results: Twenty-four studies from nine countries were selected for the final sample.Analysis of the studies' results allowed for the construction of nine descriptivethemes that were interpreted into three analytical themes: "The body as a represen-tation of HRQoL," "Living through and beyond cancer: the re-signification ofHRQoL," and "Employing resources to improve HRQoL." According to the CERQualapproach, moderate confidence estimations were achieved for the results.Conclusions: The themes reflect that the HRQoL experience is re-signified by survivors from the privilege of being alive. This process happens with the support of socialresources, family, hope, and spirituality. Based on the findings, it is suggested thathealth staff should be able to recognize the impact that cancer survival has onHRQoL and develop a care plan that addresses needs to sustain health in these survivors.

Leite, Ana Carolina Andrade Biaggi

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