Systematic review on family functioning in families of children with rare diseases

Abstract: The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion cri...

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Autores principales: Assalone, Florencia, Ortega, Javiera, Vázquez, Natalia, Vázquez, Victoria
Otros Autores: 0000-0003-0056-9806
Formato: Artículo
Lenguaje:Inglés
Publicado: Consejo General de la Psicología de España 2024
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Acceso en línea:https://repositorio.uca.edu.ar/handle/123456789/17793
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spelling I33-R139-123456789-177932024-07-02T10:53:02Z Systematic review on family functioning in families of children with rare diseases Revisión sistemática sobre el funcionamiento familiar en familias con un hijo con una enfermedad poco frecuente Assalone, Florencia Ortega, Javiera Vázquez, Natalia Vázquez, Victoria 0000-0003-0056-9806 0000-0002-0740-891X 0000-0002-2202-7103 0009-0006-3251-0699 FAMILIA ENFERMEDADES POCO FRECUENTES CUIDADORES IMPACTO PSICOLÓGICO Abstract: The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion criteria to the 460 articles initially found, a total of 49 articles made up the final sample. The following topics regarding family functioning were identified: impact of diagnosis; caregiver’s role and responsibilities; family functioning; impact on the emotional sphere; effects on marital and social life; coping strategies; family, and care and health system. The results of this study may provide justification for considering factors associated with family functioning when diagnosing a rare disease and deciding on treatment. Resumen: El presente estudio es una revisión sistemática de las investigaciones realizadas sobre el funcionamiento familiar en familias con niños con una enfermedad poco frecuente. La búsqueda se realizó en las bases de datos Pubmed, EBSCO y Google Académico, siguiendo los lineamientos PRISMA. Luego de aplicar los criterios de inclusión y exclusión a los artículos 460 encontrados inicialmente, un total de 49 artículos conformaron la muestra final. A partir del análisis de los resultados se establecieron las siguientes temáticas abordadas en relación al funcionamiento familiar: impacto del diagnóstico; función y responsabilidades del cuidador; funcionamiento familiar; impacto en la esfera emocional; efectos en la vida conyugal y social; estrategias de afrontamiento; familia, cuidados y sistema de salud. Los hallazgos de este estudio pueden proporcionar una justificación para considerar los factores asociados al funcionamiento familiar al momento de dar el diagnóstico de una EPOF y pensar un tratamiento. 2024-02-22T14:39:42Z 2024-02-22T14:39:42Z 2024 Artículo Assalone, F. et al. Systematic review on family functioning in families of children with rare diseases [en línea]. Papeles del Psicólogo. 2024, 45(1). doi: 10.23923/pap.psicol.3031. Disponible en: https://repositorio.uca.edu.ar/handle/123456789/17793 0214-7823 https://repositorio.uca.edu.ar/handle/123456789/17793 10.23923/pap.psicol.3031. eng Enfermedades neuromusculares poco frecuentes en edad pediátrica: funcionamiento familiar, adaptación psicológica y apoyo social percibido por los padres como factores asociados a la calidad de vida del niño Acceso abierto http://creativecommons.org/licenses/by-nc-sa/4.0/ application/pdf Consejo General de la Psicología de España Papeles del Psicólogo. 2024, 45(1)
institution Universidad Católica Argentina
institution_str I-33
repository_str R-139
collection Repositorio Institucional de la Universidad Católica Argentina (UCA)
language Inglés
topic FAMILIA
ENFERMEDADES POCO FRECUENTES
CUIDADORES
IMPACTO PSICOLÓGICO
spellingShingle FAMILIA
ENFERMEDADES POCO FRECUENTES
CUIDADORES
IMPACTO PSICOLÓGICO
Assalone, Florencia
Ortega, Javiera
Vázquez, Natalia
Vázquez, Victoria
Systematic review on family functioning in families of children with rare diseases
topic_facet FAMILIA
ENFERMEDADES POCO FRECUENTES
CUIDADORES
IMPACTO PSICOLÓGICO
description Abstract: The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion criteria to the 460 articles initially found, a total of 49 articles made up the final sample. The following topics regarding family functioning were identified: impact of diagnosis; caregiver’s role and responsibilities; family functioning; impact on the emotional sphere; effects on marital and social life; coping strategies; family, and care and health system. The results of this study may provide justification for considering factors associated with family functioning when diagnosing a rare disease and deciding on treatment.
author2 0000-0003-0056-9806
author_facet 0000-0003-0056-9806
Assalone, Florencia
Ortega, Javiera
Vázquez, Natalia
Vázquez, Victoria
format Artículo
author Assalone, Florencia
Ortega, Javiera
Vázquez, Natalia
Vázquez, Victoria
author_sort Assalone, Florencia
title Systematic review on family functioning in families of children with rare diseases
title_short Systematic review on family functioning in families of children with rare diseases
title_full Systematic review on family functioning in families of children with rare diseases
title_fullStr Systematic review on family functioning in families of children with rare diseases
title_full_unstemmed Systematic review on family functioning in families of children with rare diseases
title_sort systematic review on family functioning in families of children with rare diseases
publisher Consejo General de la Psicología de España
publishDate 2024
url https://repositorio.uca.edu.ar/handle/123456789/17793
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