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
Systematic review of the psychometric properties of instruments to measure sexual desire
(BioMed Central, 2018-11-18) Cartagena-Ramos, Denisse; Fuentealba-Torres, Miguel; Rebustini, Flávio; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Arcêncio, Ricardo Alexandre; Dantas, Rosana Aparecida Spadoti; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Background: Sexual desire is one of the domains of sexual function with multiple dimensions, which commonly affects men and women around the world. Classically, its assessment has been applied through self-report tools; however, an issue is related to the evidence level of these questionnaires and their validity. Therefore, a systematic review addressing the available questionnaires is really relevant, since it will be able to show their psychometric properties and evidence levels. Method: A systematic review was carried out in the PubMed, EMBASE, PsycINFO, Science Direct, and Web of Science databases. The search strategy was developed according to the following research question and combination of descriptors and keywords, including original studies with no limit of publication date and in Portuguese, English, and Spanish. Two reviewers carried out the selection of articles by abstracts and full texts as well as the analysis of the studies independently. The methodological quality of the instruments was evaluated by the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. Results: The search resulted in 1203 articles, of which 15 were included in the review. It identified 10 instruments originally developed in the English language. Unsatisfactory results on methodological quality were evidenced in cultural adaptation studies with no description of the steps of the processes and inadequacy of techniques and parameters of adequacy for models. The Principal Component Analysis with Varimax rotation predominated in the studies. Conclusions: The limitation of the techniques applied in the validation process of the reviewed instruments was evident. A limitation was observed in the number of adaptations conducted and contexts to which the instruments were applied, making it impossible to reach a better understanding of the functioning of instruments. In future studies, the use of robust techniques can ensure the quality of the psychometric properties and the accuracy and stability of instruments. A detailed description of procedures and results in validation studies may facilitate the selection and use of instruments in the academic and/or clinical settings. Systematic review registration: PROSPERO CRD42018085706.
Open Access
Metasíntesis sobre el hombre como padre y cuidador de un hijo hospitalizado
(Universidad de São Paulo, 2017) Dos Reis, Susana Maria Garcia; Leite, Ana Carolina Andrade Biaggi; Alvarenga, Willyane de Andrade; Araújo, Jeferson Santos; Zago, Márcia Maria Fontão; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: identificar, analizar y sintetizar los resultados de estudios cualitativos primarios que discuten la experiencia del padre en el cuidado al hijo hospitalizado. Método: se trata de metasíntesis cualitativa por medio de la cual fueron analizados 12 artículos, seleccionados en las bases de datos Cumulative Index to Nursing and Allied Health Literature, Literatura Latinoamericana y del Caribe en Ciencias de la Salud, Public Medline, Scopus, PsycINFO y Web of Science, publicados entre 1995 y 2015. Las etapas metodológicas propuestas por Sandelowski y Barroso se utilizaron para sistematizar la revisión, así como conceptos de la antropología de las masculinidades, para análisis y discusión de la síntesis. Resultados: la síntesis fue presentada por dos temas: 1) dilemas paternos - lo que el hombre siente y enfrenta durante la hospitalización del hijo, destacando el involucramiento emocional y cambio en la relación familiar y laboral, y 2) identidades paternas - masculinidades reajustadas ante el adolecer del hijo, que revela marcas identitarias y la paternidad reprimida, en el ambiente hospitalario. Ambos temas ilustran los retos y el reajuste de la identidad paterna. Consideraciones finales: conocer las vivencias del padre durante la hospitalización del hijo y la manera como los desafíos para el reajuste de papeles relativos a la masculinidad puede ampliar el alcance de la enfermería, y de los demás profesionales de salud, alertando sobre la importancia de incluir al padre como protagonista o coadyuvante en el cuidado del niño hospitalizado.
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 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 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
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
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.