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

Alicia Aurora Rodríguez, 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
Additional contact information
Alicia Aurora Rodríguez: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Óscar Martínez: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Imanol Amayra: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Juan Francisco López-Paz: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Mohammad Al-Rashaida: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Esther Lázaro: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Patricia Caballero: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Manuel Pérez: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Sarah Berrocoso: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Maitane García: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Paula María Luna: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Paula Pérez-Núñez: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Nicole Passi: Neuro-e-Motion Research Team, Faculty of Psychology and Education, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain

IJERPH, 2021, vol. 18, issue 6, 1-16

Abstract: 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.

Keywords: neuromuscular disease; carers; informal costs; psychological health; quality of life (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
References: View references in EconPapers View complete reference list from CitEc
Citations:

Downloads: (external link)
https://www.mdpi.com/1660-4601/18/6/2991/pdf (application/pdf)
https://www.mdpi.com/1660-4601/18/6/2991/ (text/html)

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:gam:jijerp:v:18:y:2021:i:6:p:2991-:d:517014

Access Statistics for this article

IJERPH is currently edited by Ms. Jenna Liu

More articles in IJERPH from MDPI
Bibliographic data for series maintained by MDPI Indexing Manager ().