Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors

Autores
Ortega, Javiera; Vázquez, Natalia; García Sanchoyerto, Maddalen; Amayra Caro, Imanol
Año de publicación
2026
Idioma
inglés
Tipo de recurso
artículo
Estado
versión publicada
Descripción
Fil: Ortega, Javiera. Pontificia Universidad Católica Argentina. Facultad de Psicología y Psicopedagogía. Centro Investigaciones de Psicología y Psicopedagogía; Argentina
Fil: Vázquez, Natalia. Consejo Nacional de Investigaciones Científicas y Técnicas de Argentina; Argentina
Fil: García-Sanchoyerto, Maddalen. Universidad de Deusto; España
Fil: Amayra Caro, Imanol. Universidad de Deusto; España
Objective: This study aimed to explore family and caregiver's quality of life, identifying psychosocial factors related to it. Method: A cross-sectional quantitative study was carried out with 153 caregivers of children and adolescents with various neuromuscular diagnosis. Caregivers responded to the PedsQL FIM, PAS, MOS, and FACES III scales. Results: Medium to low levels of quality of life (QoL) were found in caregivers of children with neuromuscular diseases. Caregivers reported low perceived family resources, but most of them presented good psychological adaptation and social support. QoL differences were found according to child's functional dependence and access to pharmacological treatment. Multiple regression analysis showed a model for Family QoL explained by family resources, caregiver's age, social support, and child's functional dependence. Conclusion: Families had better levels of QoL because they have a higher perception of their family resources, caregivers are older, have more functional social support, and the child has a higher degree of dependency. Results emphasized the need to adopt a psychological and family approach in the management of neuromuscular diseases.
Fuente
Journal of Developmental & Behavioral Pediatrics, vol. 47, n. 3
Materia
ENFERMEDADES NEUROMUSCULARES
TRASTORNOS NEUROMUSCULARES
CALIDAD DE VIDA
SALUD MENTAL
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:123456789/22005
Acceder
id RIUCA_088c102c475d08120152111a5b46a81f
oai_identifier_str oai:ucacris:123456789/22005
network_acronym_str RIUCA
repository_id_str 2585
network_name_str Repositorio Institucional (UCA)
spelling Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictorsOrtega, JavieraVázquez, NataliaGarcía Sanchoyerto, MaddalenAmayra Caro, ImanolENFERMEDADES NEUROMUSCULARESTRASTORNOS NEUROMUSCULARESCALIDAD DE VIDASALUD MENTALFil: Ortega, Javiera. Pontificia Universidad Católica Argentina. Facultad de Psicología y Psicopedagogía. Centro Investigaciones de Psicología y Psicopedagogía; ArgentinaFil: Vázquez, Natalia. Consejo Nacional de Investigaciones Científicas y Técnicas de Argentina; ArgentinaFil: García-Sanchoyerto, Maddalen. Universidad de Deusto; EspañaFil: Amayra Caro, Imanol. Universidad de Deusto; EspañaObjective: This study aimed to explore family and caregiver's quality of life, identifying psychosocial factors related to it. Method: A cross-sectional quantitative study was carried out with 153 caregivers of children and adolescents with various neuromuscular diagnosis. Caregivers responded to the PedsQL FIM, PAS, MOS, and FACES III scales. Results: Medium to low levels of quality of life (QoL) were found in caregivers of children with neuromuscular diseases. Caregivers reported low perceived family resources, but most of them presented good psychological adaptation and social support. QoL differences were found according to child's functional dependence and access to pharmacological treatment. Multiple regression analysis showed a model for Family QoL explained by family resources, caregiver's age, social support, and child's functional dependence. Conclusion: Families had better levels of QoL because they have a higher perception of their family resources, caregivers are older, have more functional social support, and the child has a higher degree of dependency. Results emphasized the need to adopt a psychological and family approach in the management of neuromuscular diseases.Lippincott Williams & Wilkins2026info: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/123456789/220050196-206X10.1097/DBP.0000000000001421Journal of Developmental & Behavioral Pediatrics, vol. 47, n. 3reponame:Repositorio Institucional (UCA)instname:Pontificia Universidad Católica ArgentinaengAmérica Latinainfo:eu-repo/semantics/openAccesshttps://creativecommons.org/licenses/by-nc-sa/4.0/2026-10-01T12:03:36Zoai:ucacris:123456789/22005instacron:UCAInstitucionalhttps://repositorio.uca.edu.ar/Universidad privadaNo correspondehttps://repositorio.uca.edu.ar/oaiclaudia_fernandez@uca.edu.arArgentinaNo correspondeNo correspondeNo correspondeopendoar:25852026-10-01 12:03:37.512Repositorio Institucional (UCA) - Pontificia Universidad Católica Argentinafalse
dc.title.none.fl_str_mv Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors
title Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors
spellingShingle Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors
Ortega, Javiera
ENFERMEDADES NEUROMUSCULARES
TRASTORNOS NEUROMUSCULARES
CALIDAD DE VIDA
SALUD MENTAL
title_short Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors
title_full Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors
title_fullStr Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors
title_full_unstemmed Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors
title_sort Family and caregiver quality of life in pediatric neuromuscular diseases: psychosocial and disease-related predictors
dc.creator.none.fl_str_mv Ortega, Javiera
Vázquez, Natalia
García Sanchoyerto, Maddalen
Amayra Caro, Imanol
author Ortega, Javiera
author_facet Ortega, Javiera
Vázquez, Natalia
García Sanchoyerto, Maddalen
Amayra Caro, Imanol
author_role author
author2 Vázquez, Natalia
García Sanchoyerto, Maddalen
Amayra Caro, Imanol
author2_role author
author
author
dc.subject.none.fl_str_mv ENFERMEDADES NEUROMUSCULARES
TRASTORNOS NEUROMUSCULARES
CALIDAD DE VIDA
SALUD MENTAL
topic ENFERMEDADES NEUROMUSCULARES
TRASTORNOS NEUROMUSCULARES
CALIDAD DE VIDA
SALUD MENTAL
dc.description.none.fl_txt_mv Fil: Ortega, Javiera. Pontificia Universidad Católica Argentina. Facultad de Psicología y Psicopedagogía. Centro Investigaciones de Psicología y Psicopedagogía; Argentina
Fil: Vázquez, Natalia. Consejo Nacional de Investigaciones Científicas y Técnicas de Argentina; Argentina
Fil: García-Sanchoyerto, Maddalen. Universidad de Deusto; España
Fil: Amayra Caro, Imanol. Universidad de Deusto; España
Objective: This study aimed to explore family and caregiver's quality of life, identifying psychosocial factors related to it. Method: A cross-sectional quantitative study was carried out with 153 caregivers of children and adolescents with various neuromuscular diagnosis. Caregivers responded to the PedsQL FIM, PAS, MOS, and FACES III scales. Results: Medium to low levels of quality of life (QoL) were found in caregivers of children with neuromuscular diseases. Caregivers reported low perceived family resources, but most of them presented good psychological adaptation and social support. QoL differences were found according to child's functional dependence and access to pharmacological treatment. Multiple regression analysis showed a model for Family QoL explained by family resources, caregiver's age, social support, and child's functional dependence. Conclusion: Families had better levels of QoL because they have a higher perception of their family resources, caregivers are older, have more functional social support, and the child has a higher degree of dependency. Results emphasized the need to adopt a psychological and family approach in the management of neuromuscular diseases.
description Fil: Ortega, Javiera. Pontificia Universidad Católica Argentina. Facultad de Psicología y Psicopedagogía. Centro Investigaciones de Psicología y Psicopedagogía; Argentina
publishDate 2026
dc.date.none.fl_str_mv 2026
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/123456789/22005
0196-206X
10.1097/DBP.0000000000001421
url https://repositorio.uca.edu.ar/handle/123456789/22005
identifier_str_mv 0196-206X
10.1097/DBP.0000000000001421
dc.language.none.fl_str_mv eng
language eng
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 Lippincott Williams & Wilkins
publisher.none.fl_str_mv Lippincott Williams & Wilkins
dc.source.none.fl_str_mv Journal of Developmental & Behavioral Pediatrics, vol. 47, n. 3
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_ 1877862979347677184
score 12.854657

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