Please use this identifier to cite or link to this item: https://repositorio.uca.edu.ar/handle/123456789/15186
Título : The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study
Autor : Rodríguez, Alicia Aurora 
Amayra Caro, Imanol 
López Paz, Juan Francisco 
Martínez, Oscar 
García, Maitane 
Salgueiro, Mónika 
Al-Rashaida, Mohammad 
Luna, Paula María 
Pérez Nuñez, Paula 
Passi, Nicole 
García, Irune 
Ortega, Javiera 
Palabras clave : DISTROFIA MUSCULAR DE DUCHENNECUIDADORESSALUD MENTALCALIDAD DE VIDAORGANIZACIONES NO GUBERNAMENTALESNIÑOS
Fecha de publicación : 2022
Editorial : Multidisciplinary Digital Publishing Institute
Cita : Rodríguez, A.A. et al. The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study [en línea]. Int. J. Environ. Res. Public Health 2022, 19. doi: 10.3390/ijerph191912334. Disponible en: https://repositorio.uca.edu.ar/handle/123456789/15186
Proyecto: Enfermedades neuromusculares poco frecuentes en edad pediátrica: funcionamiento familiar, adaptación psicológica y apoyo social percibido por los padres como factores asociados a la calidad de vida del niño 
Resumen : Abstract: Caregivers’ 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.
Cobertura Espacial: España
México
URI : https://repositorio.uca.edu.ar/handle/123456789/15186
Disciplina: PSICOLOGIA
DOI: 10.3390/ijerph191912334
Derechos: Acceso abierto
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