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

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 observati...

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Autores principales: Ortega, Javiera, Vázquez, Natalia, Amayra Caro, Imanol
Formato: Artículo
Lenguaje:Inglés
Publicado: Springer 2023
Materias:
PANDEMIA
COVID-19
ENFERMEDADES NEUROMUSCULARES
CALIDAD DE VIDA
CUIDADORES
FAMILIA
Acceso en línea:https://repositorio.uca.edu.ar/handle/123456789/16132
Aporte de:
Repositorio Institucional de la Universidad Católica Argentina (UCA) de Universidad Católica Argentina
id I33-R139-123456789-16132
record_format dspace
spelling I33-R139-123456789-161322023-07-03T15:09:43Z Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic Ortega, Javiera Vázquez, Natalia Amayra Caro, Imanol PANDEMIA COVID-19 ENFERMEDADES NEUROMUSCULARES CALIDAD DE VIDA CUIDADORES FAMILIA 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. 2023-04-04T12:02:52Z 2023-04-04T12:02:52Z 2023 Artículo 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 2366-7540 (online) 2366-7532 (impreso) https://repositorio.uca.edu.ar/handle/123456789/16132 10.1007/s41252-023-00328-3 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 América Latina Springer Advances in Neurodevelopmental Disorders, 2023
institution Universidad Católica Argentina
institution_str I-33
repository_str R-139
collection Repositorio Institucional de la Universidad Católica Argentina (UCA)
language Inglés
topic PANDEMIA
COVID-19
ENFERMEDADES NEUROMUSCULARES
CALIDAD DE VIDA
CUIDADORES
FAMILIA
spellingShingle PANDEMIA
COVID-19
ENFERMEDADES NEUROMUSCULARES
CALIDAD DE VIDA
CUIDADORES
FAMILIA
Ortega, Javiera
Vázquez, Natalia
Amayra Caro, Imanol
Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
topic_facet PANDEMIA
COVID-19
ENFERMEDADES NEUROMUSCULARES
CALIDAD DE VIDA
CUIDADORES
FAMILIA
description 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.
format Artículo
author Ortega, Javiera
Vázquez, Natalia
Amayra Caro, Imanol
author_facet Ortega, Javiera
Vázquez, Natalia
Amayra Caro, Imanol
author_sort Ortega, Javiera
title Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic
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
publisher Springer
publishDate 2023
url https://repositorio.uca.edu.ar/handle/123456789/16132
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