The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study

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 associati...

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Autores principales: 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
Formato: Artículo
Lenguaje:Inglés
Publicado: Multidisciplinary Digital Publishing Institute 2022
Materias:
DISTROFIA MUSCULAR DE DUCHENNE
CUIDADORES
SALUD MENTAL
CALIDAD DE VIDA
ORGANIZACIONES NO GUBERNAMENTALES
NIÑOS
Acceso en línea:https://repositorio.uca.edu.ar/handle/123456789/15186
Aporte de:
Repositorio Institucional de la Universidad Católica Argentina (UCA) de Universidad Católica Argentina
id I33-R139-123456789-15186
record_format dspace
institution Universidad Católica Argentina
institution_str I-33
repository_str R-139
collection Repositorio Institucional de la Universidad Católica Argentina (UCA)
language Inglés
topic DISTROFIA MUSCULAR DE DUCHENNE
CUIDADORES
SALUD MENTAL
CALIDAD DE VIDA
ORGANIZACIONES NO GUBERNAMENTALES
NIÑOS
spellingShingle DISTROFIA MUSCULAR DE DUCHENNE
CUIDADORES
SALUD MENTAL
CALIDAD DE VIDA
ORGANIZACIONES NO GUBERNAMENTALES
NIÑOS
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
The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study
topic_facet DISTROFIA MUSCULAR DE DUCHENNE
CUIDADORES
SALUD MENTAL
CALIDAD DE VIDA
ORGANIZACIONES NO GUBERNAMENTALES
NIÑOS
description 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.
format Artículo
author 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
author_facet 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
author_sort Rodríguez, Alicia Aurora
title The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study
title_short The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study
title_full The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study
title_fullStr The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study
title_full_unstemmed The role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study
title_sort role of associations in reducing the emotional and financial impact on parents caring for children with duchenne muscular dystrophy : a cross-cultural study
publisher Multidisciplinary Digital Publishing Institute
publishDate 2022
url https://repositorio.uca.edu.ar/handle/123456789/15186
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bdutipo_str Repositorios
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