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 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
Olas de esperanza familiar: narrativas de las familias en el contexto de la enfermedad crónica pediátrica
(Universidad de São Paulo, Escuela de Enfermería de Ribeirão Preto, 2021) Leite, Ana Carolina Andrade Biaggi; García Vivar, Cristina; Demontigny F.; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak
Objetivo: analizar las narrativas sobre la experiencia de esperanza de las familias en el contexto de la enfermedad crónica pediátrica. Método: investigación narrativa que utilizó la Enfermería de Sistemas Familiares como marco conceptual. En este estudio participaron tres familias de niños y adolescentes diagnosticados con enfermedades crónicas complejas, con un total de 10 participantes. La recogida de datos se desarrolló mediante entrevistas familiares con foto-elicitación. Se construyeron y analizaron narrativas familiares siguiendo el análisis temático inductivo con triangulación teórica de los de datos. Resultados: el tema analítico - Olas de esperanza familiar en el contexto de la enfermedad crónica pediátrica - se compone de cuatro tipos diferentes de esperanza: esperanza incierta, esperanza cuidadora, esperanza latente y esperanza expectante. El movimiento a través de estas esperanzas genera una fuerza motriz y dependiente de varios factores: apoyo, información, búsqueda de la normalidad, pensamientos y comparaciones. Conclusión: los resultados destacan la interacción y reciprocidad de los miembros de la unidad familiar, la dinámica de la esperanza, e ilustran los diferentes tipos de esperanza y los factores que los influyen. Este estudio destaca la experiencia de la esperanza como un recurso familiar, en vez de un recurso individual, y apoya a los profesionales de la salud en la planificación del cuidado familiar considerando la esperanza como un recurso familiar esencial y dinámico.

García Vivar, Cristina

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