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
Translation and cultural adaptation of the Needs of Parents Questionnaire (NPQ) to be used in Brazil
(Universidade Federal do Rio de Janeiro, 2018) Andrade, Rosyan Carvalho; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Martimiano, Rafael Rozeta; Dos Santos, Claudia Benedita; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: Realizar traducción, adaptación cultural y evaluación de la consistencia interna de la versión adaptada del Needs of Parents Questionnaire (NPQ) en muestras con padres de niños hospitalizados en Brasil. Método: Estudio metodológico, fundamentado esencialmente en el método DISABKIDS®, desarrollado en hospital público universitario. Fueron realizadas etapas de traducción, evaluación por un comité de expertos, retrotraducción, validación semántica y estudio piloto. Resultados: Después del proceso de traducción y retrotraducción del instrumento original para el portugués, se produjo la validación semántica con 30 padres, realizándose adecuaciones hasta que la versión traducida fuera considerada comprensible por la mayoría. Después, fue realizado el estudio piloto con otros 59 padres, presentando valores satisfactorios de la consistencia interna. Conclusiones: El NPQ adaptado se demostró confiable y, después de la evaluación de propiedades psicométricas en el estudio de campo, podrá ser útil para evaluar las necesidades de padres de niños hospitalizados, cualificando el cuidado de enfermería.
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
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
The effect of music on the spirituality of patients: a systematic review
(SAGE, 2017-06-07) Alvarenga, Willyane de Andrade; Leite, Ana Carolina Andrade Biaggi; Oliveira, Marina Sanches; Nascimento, Lucila; Silva-Rodrigues, Fernanda Machado; Nunes, Michelle Darezzo Rodrigues; Carvalho, Emilia Campos de; Ciencias de la Salud; Osasun Zientziak
Purpose: Although some studies have suggested that music can positively affect physical and psychological variables, few have evaluated its effects on spirituality. This study aimed to evaluate the effects of musical interventions on the spirituality of patients, regardless of diagnoses. Method: This was a systematic literature review that followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations conducted through a relevant search of terms in six databases (PubMed, Web of Science, CINAHL, PsycINFO, ScienceDirect, and LILACS) without temporal delimitation. Experimental or quasi-experimental studies were included, involving participants regardless of diagnoses, to assess the effect of music on spirituality, either through musical intervention as music medicine or through music therapy. The methodological quality of included studies was evaluated using the Physiotherapy Evidence Database scale. Results: A total of 147 studies were identified; 7 met the inclusion criteria. Five studies were randomized controlled trials involving six music therapists leading the musical intervention with the active participation of patients. The interventions used were heterogeneous. Three studies were associated with improved spirituality after the intervention. Four studies used measurements to evaluate spiritual well-being. Conclusion: This review did not allow ascertaining the positive impact of music intervention on spirituality in patients, which motivates further research.
Open Access
Peripherally inserted central catheter in pediatric oncology: a scoping review
(Universidade Federal de São Paulo, 2019-06-10) Bortoli, Paula Saud de; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Alvarenga, Carolina Spinelli; Bessa, Caroline Rabaza; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: Conocer la producción científi ca sobre la utilización y mantenimiento del catéter central de inserción periférica (CCIP) en niños y adolescentes en tratamiento oncológico. Método: Revisión tipo Scoping Review, según el método adaptado y propuesto por Levac, Colquhoun y O¿Brien. Se realizaron cinco etapas: identifi cación del tema de investigación; búsquedas de estudios relevantes; selección de estudios; extracción de datos; agrupación, resumen y presentación de los resultados. Se utilizaron las bases de datos PubMed, CINAHL, Scopus, LILACS y Embase. Fueron incluidos artículos de revisión bibliográfi ca u originales, de enfoque cuantitativo o cualitativo, que se centraran en el catéter venoso central de inserción periférica en niños y adolescentes con cáncer, en cualquier etapa del tratamiento oncológico y cualquier contexto de cuidado, publicados en portugués, inglés y español, en el período de 2006 a 2017. Resultados: En las búsquedas en las bases de datos se encontraron 609 artículos únicos, de los cuales nueve formaron parte de la muestra fi nal. Fueron elaborados cinco temas principales relacionados a la utilización del catéter venoso central de inserción periférica: indicación, técnica de inserción, mantenimiento del catéter, complicaciones relacionadas y resultados de uso. Los resultados permiten sintetizar las recomendaciones para la utilización de este dispositivo respecto, sobre todo, a: uso terapéutico y tipo de neoplasia, elección de venas, tipos de vendaje, principales complicaciones y resultados. Conclusión: El catéter venoso central de inserción periférica muestra ser una opción segura y confi able para terapia endovenosa en la población pediátrica oncológica. El presente estudio ayuda a esclarecer la indicación de su utilización para tal población y señala temas que serán analizados en futuros estudios empíricos.
Open Access
'Opportunistic care': a focus group study of nurses' perspective on caring for long-term cancer survivors and their families
(Wolters Kluwer, 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
Measuring spiritual well-being in Brazilian adolescents with chronic illness using the FACIT-Sp-12: age adaptation of the self-report version, development of the parental-report version, and validation. journal of religion and health
(Springer, 2019-08-24) Alvarenga, Willyane de Andrade; Nascimento, Lucila; Dos Santos, Claudia Benedita; Leite, Ana Carolina Andrade Biaggi; Mühlan, Holger; Schmidt, Silke; Bullinger, Monika; Carvalho, Emilia Campos de; Bredle, Jason; Arnold, Benjamin; Coelho, Robson de Castro; Vieira, Margarida; Ciencias de la Salud; Osasun Zientziak
Spiritual well-being is a major issue in health care, but instruments for measuring this construct in adolescents are lacking. This study adapted the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12) for use with Brazilian adolescents with chronic diseases and developed a parental observer-rated version, using an expert panel, back-translation, and cognitive interviews with 72 participants. The psychometric properties of both versions were verified with two- and three-factor models by testing with 212 participants. The self- and parental-reported versions showed face validity, content validity, and acceptable levels of internal consistency for the overall scale and the two-factor model. The convergent validity was satisfactory for most items in both two- and three-factor models, but there was a lack of discrimination in the three-factor model using multitrait-multimethod analysis. This study presents the first instrument to assess the spiritual well-being of adolescents from their point of view and to allow their parents to serve as evaluators. However, we recommend further psychometric testing of the self- and parental-report scales to assess spiritual well-being in adolescents with chronic diseases in Brazil.
Open Access
Violência contra mulheres lésbicas/ bissexuais e vulnerabilidade em saúde: revisão da literatura
(Sociedade Portuguesa de Psicologia da Saúde, 2021) Souza, Carolina de; Oliveira-Cardoso, Érika; Oliveira, Wanderlei Abadio de; Nascimento, Lucila; Araújo, Jeferson Santos; Leite, Ana Carolina Andrade Biaggi; Neris, Rhyquelle Rhibna; Name Risk, Eduardo; Braga, Iara; Dos Santos, Manoel; Ciencias de la Salud; Osasun Zientziak
Violence and psychosocial stressors related to experiences of discrimination based on sexual orientation are associated with negative health outcomes and decreased life expectancy of lesbian and bisexual women across the lifespan. This study aimed to analyze the scientific production regardind violence perpetrated against homosexual and bisexual women. The integrative review included articles published in the period 2006 to 2019, indexed in the PubMed, LILACS and PsycINFO databases, based on the descriptors in health sciences: violence against women, female homosexuality, bisexuality, battered women, health. Eleven articles were selected, most of them show cross-sectional, descriptive and quantitative design. The results show that the LGBT population as a whole is recurrently subjected to various types of violence, especially women who are part of this social segment, which are doubly victimized, since violent manifestations due to sexual orientation overlap with gender violence. Violence against lesbian and bisexual women represents a serious public health problem, aggravated by the fact that it remains hidden by a veil of invisibility.