Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic

Autores
Ortega, Javiera; Vázquez, Natalia; Amayra Caro, Imanol
Año de publicación
2023
Idioma
inglés
Tipo de recurso
artículo
Estado
versión publicada
Descripción
Fil: Javiera Ortega. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
Fil: Javiera Ortega. Pontificia Universidad Católica Argentina. Facultad de Psicología Y Psicopedagogía. Centro Investigaciones de Psicología Y Psicopedagogía; Argentina
Fil: Vázquez, Natalia. Fundación de Psicología Aplicada a Enfermedades Huérfanas; Argentina
Fil: Vázquez, Natalia. Universidad Austral. Facultad de Ciencias Biomedicas; Argentina
Fil: Amayra Caro, Imanol. Universidad de Deusto. Facultad de Ciencias Sociales. Departamento de Psicología. Equipo Neuro-e-Motion; España
Abstract: Objectives The COVID-19 pandemic has afected the entire population, especially the population with chronic diseases. This study aimed to describe the quality of life of children and adults with neuromuscular diseases and their caregivers during the COVID-19 pandemic. Methods A observational correlational study was conducted. Forty-seven participants, including adults with NMD and caregivers of children with NMD, took part in the study. The WHOQOL-BREF and PedsQL 4.0 GCS and FIM scales were used. Results The PedsQL indicated a mean of 55.85 (SD=22.05) for children, and a mean of 55.76 (SD=16.72) for caregivers. Adults reported a mean of 67 (SD=22.5) for their general perception of quality of life, and a M=53 (SD=28.25) for their perception on health. Conclusions The results showed regular to low quality of life of all children, adults, and caregivers, mainly in the physical dimension for people with neuromuscular diseases, and in the concerns dimension for caregivers. These results warn about the physical and psychological vulnerability situation in which this population fnds itself.
Fuente
Advances in Neurodevelopmental Disorders, 2023
Materia
PANDEMIA
COVID-19
ENFERMEDADES NEUROMUSCULARES
CALIDAD DE VIDA
CUIDADORES
FAMILIA
Nivel de accesibilidad
acceso abierto
Condiciones de uso
https://creativecommons.org/licenses/by-nc-sa/4.0/
Repositorio
Repositorio Institucional (UCA)
Institución
Pontificia Universidad Católica Argentina
OAI Identificador
oai:ucacris:123456789/16132
Acceder
id RIUCA_8fd1a1acb09bce25e162ed85e045d6b1
oai_identifier_str oai:ucacris:123456789/16132
network_acronym_str RIUCA
repository_id_str 2585
network_name_str Repositorio Institucional (UCA)
spelling Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemicOrtega, JavieraVázquez, NataliaAmayra Caro, ImanolPANDEMIACOVID-19ENFERMEDADES NEUROMUSCULARESCALIDAD DE VIDACUIDADORESFAMILIAFil: Javiera Ortega. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: Javiera Ortega. Pontificia Universidad Católica Argentina. Facultad de Psicología Y Psicopedagogía. Centro Investigaciones de Psicología Y Psicopedagogía; ArgentinaFil: Vázquez, Natalia. Fundación de Psicología Aplicada a Enfermedades Huérfanas; ArgentinaFil: Vázquez, Natalia. Universidad Austral. Facultad de Ciencias Biomedicas; ArgentinaFil: Amayra Caro, Imanol. Universidad de Deusto. Facultad de Ciencias Sociales. Departamento de Psicología. Equipo Neuro-e-Motion; EspañaAbstract: Objectives The COVID-19 pandemic has afected the entire population, especially the population with chronic diseases. This study aimed to describe the quality of life of children and adults with neuromuscular diseases and their caregivers during the COVID-19 pandemic. Methods A observational correlational study was conducted. Forty-seven participants, including adults with NMD and caregivers of children with NMD, took part in the study. The WHOQOL-BREF and PedsQL 4.0 GCS and FIM scales were used. Results The PedsQL indicated a mean of 55.85 (SD=22.05) for children, and a mean of 55.76 (SD=16.72) for caregivers. Adults reported a mean of 67 (SD=22.5) for their general perception of quality of life, and a M=53 (SD=28.25) for their perception on health. Conclusions The results showed regular to low quality of life of all children, adults, and caregivers, mainly in the physical dimension for people with neuromuscular diseases, and in the concerns dimension for caregivers. These results warn about the physical and psychological vulnerability situation in which this population fnds itself.Springer2023info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttp://purl.org/coar/resource_type/c_6501info:ar-repo/semantics/articuloapplication/pdfhttps://repositorio.uca.edu.ar/handle/123456789/161322366-7540 (online)2366-7532 (impreso)10.1007/s41252-023-00328-3Javiera O., Vázquez, N., Amayra Caro, I. Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic [en línea]. Advances in Neurodevelopmental Disorders. 2023. doi:10.1007/s41252-023-00328-3. Disponible en: https://repositorio.uca.edu.ar/handle/123456789/16132Advances in Neurodevelopmental Disorders, 2023reponame:Repositorio Institucional (UCA)instname:Pontificia Universidad Católica ArgentinaengEnfermedades 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 niñoAmérica Latinainfo:eu-repo/semantics/openAccesshttps://creativecommons.org/licenses/by-nc-sa/4.0/2025-07-03T10:59:11Zoai:ucacris:123456789/16132instacron:UCAInstitucionalhttps://repositorio.uca.edu.ar/Universidad privadaNo correspondehttps://repositorio.uca.edu.ar/oaiclaudia_fernandez@uca.edu.arArgentinaNo correspondeNo correspondeNo correspondeopendoar:25852025-07-03 10:59:11.391Repositorio Institucional (UCA) - Pontificia Universidad Católica Argentinafalse
dc.title.none.fl_str_mv Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
title Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
spellingShingle Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
Ortega, Javiera
PANDEMIA
COVID-19
ENFERMEDADES NEUROMUSCULARES
CALIDAD DE VIDA
CUIDADORES
FAMILIA
title_short Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
title_full Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
title_fullStr Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
title_full_unstemmed Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
title_sort Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
dc.creator.none.fl_str_mv Ortega, Javiera
Vázquez, Natalia
Amayra Caro, Imanol
author Ortega, Javiera
author_facet Ortega, Javiera
Vázquez, Natalia
Amayra Caro, Imanol
author_role author
author2 Vázquez, Natalia
Amayra Caro, Imanol
author2_role author
author
dc.subject.none.fl_str_mv PANDEMIA
COVID-19
ENFERMEDADES NEUROMUSCULARES
CALIDAD DE VIDA
CUIDADORES
FAMILIA
topic PANDEMIA
COVID-19
ENFERMEDADES NEUROMUSCULARES
CALIDAD DE VIDA
CUIDADORES
FAMILIA
dc.description.none.fl_txt_mv Fil: Javiera Ortega. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
Fil: Javiera Ortega. Pontificia Universidad Católica Argentina. Facultad de Psicología Y Psicopedagogía. Centro Investigaciones de Psicología Y Psicopedagogía; Argentina
Fil: Vázquez, Natalia. Fundación de Psicología Aplicada a Enfermedades Huérfanas; Argentina
Fil: Vázquez, Natalia. Universidad Austral. Facultad de Ciencias Biomedicas; Argentina
Fil: Amayra Caro, Imanol. Universidad de Deusto. Facultad de Ciencias Sociales. Departamento de Psicología. Equipo Neuro-e-Motion; España
Abstract: Objectives The COVID-19 pandemic has afected the entire population, especially the population with chronic diseases. This study aimed to describe the quality of life of children and adults with neuromuscular diseases and their caregivers during the COVID-19 pandemic. Methods A observational correlational study was conducted. Forty-seven participants, including adults with NMD and caregivers of children with NMD, took part in the study. The WHOQOL-BREF and PedsQL 4.0 GCS and FIM scales were used. Results The PedsQL indicated a mean of 55.85 (SD=22.05) for children, and a mean of 55.76 (SD=16.72) for caregivers. Adults reported a mean of 67 (SD=22.5) for their general perception of quality of life, and a M=53 (SD=28.25) for their perception on health. Conclusions The results showed regular to low quality of life of all children, adults, and caregivers, mainly in the physical dimension for people with neuromuscular diseases, and in the concerns dimension for caregivers. These results warn about the physical and psychological vulnerability situation in which this population fnds itself.
description Fil: Javiera Ortega. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
publishDate 2023
dc.date.none.fl_str_mv 2023
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
http://purl.org/coar/resource_type/c_6501
info:ar-repo/semantics/articulo
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://repositorio.uca.edu.ar/handle/123456789/16132
2366-7540 (online)
2366-7532 (impreso)
10.1007/s41252-023-00328-3
Javiera O., Vázquez, N., Amayra Caro, I. Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic [en línea]. Advances in Neurodevelopmental Disorders. 2023. doi:10.1007/s41252-023-00328-3. Disponible en: https://repositorio.uca.edu.ar/handle/123456789/16132
url https://repositorio.uca.edu.ar/handle/123456789/16132
identifier_str_mv 2366-7540 (online)
2366-7532 (impreso)
10.1007/s41252-023-00328-3
Javiera O., Vázquez, N., Amayra Caro, I. Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic [en línea]. Advances in Neurodevelopmental Disorders. 2023. doi:10.1007/s41252-023-00328-3. Disponible en: https://repositorio.uca.edu.ar/handle/123456789/16132
dc.language.none.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 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
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
https://creativecommons.org/licenses/by-nc-sa/4.0/
eu_rights_str_mv openAccess
rights_invalid_str_mv https://creativecommons.org/licenses/by-nc-sa/4.0/
dc.format.none.fl_str_mv application/pdf
dc.coverage.none.fl_str_mv América Latina
dc.publisher.none.fl_str_mv Springer
publisher.none.fl_str_mv Springer
dc.source.none.fl_str_mv Advances in Neurodevelopmental Disorders, 2023
reponame:Repositorio Institucional (UCA)
instname:Pontificia Universidad Católica Argentina
reponame_str Repositorio Institucional (UCA)
collection Repositorio Institucional (UCA)
instname_str Pontificia Universidad Católica Argentina
repository.name.fl_str_mv Repositorio Institucional (UCA) - Pontificia Universidad Católica Argentina
repository.mail.fl_str_mv claudia_fernandez@uca.edu.ar
_version_ 1836638367972851712
score 13.13397

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