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, Javiera Ortega

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Article number12334
JournalInternational Journal of Environmental Research and Public Health
Volume19
Issue number19
DOIs
Publication statusPublished - Oct 2022
Externally publishedYes

Keywords

  • Duchenne muscular dystrophy
  • Mexico
  • Spain
  • caregivers
  • economic costs
  • non-governmental organizations
  • psychological health
  • quality of life

ASJC Scopus subject areas

  • Pollution
  • Public Health, Environmental and Occupational Health
  • Health, Toxicology and Mutagenesis

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