The role of associations in reducing the emotional and financial impact on parents caring for children with Duchenne Muscular Dystrophy: a cross-cultural study

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dc.contributor.authorRodríguez Bermejo, Alicia Aurora
dc.contributor.authorAmayra Caro, Imanol
dc.contributor.authorLópez Paz, Juan Francisco
dc.contributor.authorMartínez, Óscar
dc.contributor.authorGarcía Martín, Maitane
dc.contributor.authorSalgueiro, Monika
dc.contributor.authorAl-Rashaida, Mohammad Ali Hussein
dc.contributor.authorLuna Ovalle, Paula
dc.contributor.authorPérez Núñez, Paula
dc.contributor.authorPassi, Nicole
dc.contributor.authorGarcía Urquiza, Irune
dc.contributor.authorOrtega, Javiera
dc.date.accessioned2025-07-21T10:36:22Z
dc.date.available2025-07-21T10:36:22Z
dc.date.issued2022-09-22
dc.date.updated2025-07-21T10:36:22Z
dc.description.abstractCaregivers’ emotions and finances are affected by the deterioration of functional capacity of patients with Duchenne muscular dystrophy (DMD), both in Mexico and Spain. Patient associations may reduce this impact on caregivers. This study aims to study the role of two models of associations, inspired by two different cultural models, in how the services they provide can help decrease the emotional and financial impact on the caregivers of children with DMD. The sample consisted of 34 caregivers from Mexico and 40 from Spain recruited from Spanish hospitals and rare disease organizations in Spain and Mexico. The instruments used consisted of a sociodemographic and socioeconomic questionnaire, the CarerQol-7D, the PHQ-15, the Zarit Caregiver’s Burden Scale and the SWLS. The results showed that caregivers in Mexico are in better physical and psychological health than caregivers in Spain. They also receive more subsidies than those in Spain. Caregivers in Mexico have a greater well-being and are less affected by the economic impact of the disease due to the associations’ day-to-day work and the fact that they generate a network of health services that they make available to the patient free of charge. These differences may also be attributable to cultural issues and to the fact that Mexico has a deeply established culture of support.en
dc.description.sponsorshipGrant from the Education Department of the Basque Government (BOPV, 13 july 2021) (PRE_2021_2_0007)en
dc.identifier.citationRodríguez, A. A., Amayra, I., López-Paz, J. F., Martínez, O., García, M., Salgueiro, M., Al-Rashaida, M., Luna, P. M., Pérez-Nuñez, P., Passi, N., García, I., & Ortega, J. (2022). The role of associations in reducing the emotional and financial impact on parents caring for children with Duchenne Muscular Dystrophy: a cross-cultural study. International Journal of Environmental Research and Public Health, 19(19). https://doi.org/10.3390/IJERPH191912334
dc.identifier.doi10.3390/IJERPH191912334
dc.identifier.eissn1660-4601
dc.identifier.issn1661-7827
dc.identifier.urihttps://hdl.handle.net/20.500.14454/3258
dc.language.isoeng
dc.publisherMDPI
dc.rights© 2022 by the authors
dc.subject.otherCaregivers
dc.subject.otherDuchenne muscular dystrophy
dc.subject.otherEconomic costs
dc.subject.otherMexico
dc.subject.otherNon-governmental organizations
dc.subject.otherPsychological health
dc.subject.otherQuality of life
dc.subject.otherSpain
dc.titleThe role of associations in reducing the emotional and financial impact on parents caring for children with Duchenne Muscular Dystrophy: a cross-cultural studyen
dc.typejournal article
dcterms.accessRightsopen access
oaire.citation.issue19
oaire.citation.titleInternational Journal of Environmental Research and Public Health
oaire.citation.volume19
oaire.licenseConditionhttps://creativecommons.org/licenses/by/4.0/
oaire.versionVoR
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