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Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease

This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study....

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Autores principales: Rodríguez, Alicia Aurora, Martínez, Óscar, Amayra, Imanol, López-Paz, Juan Francisco, Al-Rashaida, Mohammad, Lázaro, Esther, Caballero, Patricia, Pérez, Manuel, Berrocoso, Sarah, García, Maitane, Luna, Paula María, Pérez-Núñez, Paula, Passi, Nicole
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7999397/
https://www.ncbi.nlm.nih.gov/pubmed/33803993
http://dx.doi.org/10.3390/ijerph18062991
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author Rodríguez, Alicia Aurora
Martínez, Óscar
Amayra, Imanol
López-Paz, Juan Francisco
Al-Rashaida, Mohammad
Lázaro, Esther
Caballero, Patricia
Pérez, Manuel
Berrocoso, Sarah
García, Maitane
Luna, Paula María
Pérez-Núñez, Paula
Passi, Nicole
author_facet Rodríguez, Alicia Aurora
Martínez, Óscar
Amayra, Imanol
López-Paz, Juan Francisco
Al-Rashaida, Mohammad
Lázaro, Esther
Caballero, Patricia
Pérez, Manuel
Berrocoso, Sarah
García, Maitane
Luna, Paula María
Pérez-Núñez, Paula
Passi, Nicole
author_sort Rodríguez, Alicia Aurora
collection PubMed
description This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis.
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spelling pubmed-79993972021-03-28 Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease Rodríguez, Alicia Aurora Martínez, Óscar Amayra, Imanol López-Paz, Juan Francisco Al-Rashaida, Mohammad Lázaro, Esther Caballero, Patricia Pérez, Manuel Berrocoso, Sarah García, Maitane Luna, Paula María Pérez-Núñez, Paula Passi, Nicole Int J Environ Res Public Health Article This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis. MDPI 2021-03-15 /pmc/articles/PMC7999397/ /pubmed/33803993 http://dx.doi.org/10.3390/ijerph18062991 Text en © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Rodríguez, Alicia Aurora
Martínez, Óscar
Amayra, Imanol
López-Paz, Juan Francisco
Al-Rashaida, Mohammad
Lázaro, Esther
Caballero, Patricia
Pérez, Manuel
Berrocoso, Sarah
García, Maitane
Luna, Paula María
Pérez-Núñez, Paula
Passi, Nicole
Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease
title Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease
title_full Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease
title_fullStr Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease
title_full_unstemmed Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease
title_short Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease
title_sort diseases costs and impact of the caring role on informal carers of children with neuromuscular disease
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7999397/
https://www.ncbi.nlm.nih.gov/pubmed/33803993
http://dx.doi.org/10.3390/ijerph18062991
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