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: | , , , , , , , , , , , |
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| Formato: | Artículo |
| Lenguaje: | Inglés |
| Publicado: |
Multidisciplinary Digital Publishing Institute
2022
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| Materias: | |
| Acceso en línea: | https://repositorio.uca.edu.ar/handle/123456789/15186 |
| Aporte de: |
| Sumario: | 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. |
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