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Article

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

Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
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Author to whom correspondence should be addressed.
Academic Editors: Dikaios Sakellariou and Hisayo Katsui
Int. J. Environ. Res. Public Health 2021, 18(6), 2991; https://doi.org/10.3390/ijerph18062991
Received: 26 January 2021 / Revised: 9 March 2021 / Accepted: 10 March 2021 / Published: 15 March 2021
(This article belongs to the Special Issue Disability and Healthcare Disparities)
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. View Full-Text
Keywords: neuromuscular disease; carers; informal costs; psychological health; quality of life neuromuscular disease; carers; informal costs; psychological health; quality of life
MDPI and ACS Style

Rodríguez, A.A.; Martínez, Ó.; Amayra, I.; López-Paz, J.F.; Al-Rashaida, M.; Lázaro, E.; Caballero, P.; Pérez, M.; Berrocoso, S.; García, M.; Luna, P.M.; Pérez-Núñez, P.; Passi, N. Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease. Int. J. Environ. Res. Public Health 2021, 18, 2991. https://doi.org/10.3390/ijerph18062991

AMA Style

Rodríguez AA, Martínez Ó, Amayra I, López-Paz JF, Al-Rashaida M, Lázaro E, Caballero P, Pérez M, Berrocoso S, García M, Luna PM, Pérez-Núñez P, Passi N. Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease. International Journal of Environmental Research and Public Health. 2021; 18(6):2991. https://doi.org/10.3390/ijerph18062991

Chicago/Turabian Style

Rodríguez, Alicia Aurora, Óscar Martínez, Imanol Amayra, Juan Francisco López-Paz, Mohammad Al-Rashaida, Esther Lázaro, Patricia Caballero, Manuel Pérez, Sarah Berrocoso, Maitane García, Paula María Luna, Paula Pérez-Núñez, and Nicole Passi. 2021. "Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease" International Journal of Environmental Research and Public Health 18, no. 6: 2991. https://doi.org/10.3390/ijerph18062991

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