The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study

Alicia Aurora Rodríguez (), Imanol Amayra, Juan Francisco López-Paz, Oscar Martínez, Maitane García, Mónika Salgueiro, Mohammad Al-Rashaida, Paula María Luna, Paula Pérez-Nuñez, Nicole Passi, Irune García and Javiera Ortega
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Alicia Aurora Rodríguez: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Imanol Amayra: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Juan Francisco López-Paz: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Oscar Martínez: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Maitane García: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Mónika Salgueiro: Department of Clinical and Health Psychology, and Research Methodology, Faculty of Psychology, University of the Basque Country, Tolosa Hiribidea, 70, 20018 Donostia, Spain
Mohammad Al-Rashaida: Department of Education, College of Arts and Sciences, Dubai Campus, Abu Dhabi University, Abu Dhabi 59911, United Arab Emirates
Paula María Luna: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Paula Pérez-Nuñez: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Nicole Passi: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Irune García: Neuro-e-Motion Research Team, Faculty of Health Sciences, University of Deusto, Av. Universidades, 24, 48007 Bilbao, Spain
Javiera Ortega: Centro Investigaciones de Psicología y Psicopedagogía [CIPP], Facultad de Psicología y Psicopedagogía, Pontificia Universidad Católica Argentina, Buenos Aires 1107, Argentina

IJERPH, 2022, vol. 19, issue 19, 1-15

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.

Keywords: Duchenne muscular dystrophy; caregivers; economic costs; psychological health; quality of life; non-governmental organizations; Mexico; Spain (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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