Support Resources in the Lives of Parents of Children with Duchenne–Becker Muscular Dystrophy: An Ecological Approach Perspective

Abstract

Summary: This study examines the support resources available to parents of children with Duchenne and Becker muscular dystrophy (DBMD) and their roles in fostering parental coping and resilience. Grounded in Bronfenbrenner's Ecological Model (1979), it explores how individual, familial, and community-level resources shape caregiving experiences. Using a qualitative phenomenological approach, in-depth interviews were conducted with 22 parents (three fathers and 19 mothers) of children with DBMD in Israel. Thematic analysis revealed three primary categories of support: psychological resources, family support, and social support, encompassing both formal services and informal networks. Findings: Many participants emphasized the critical role of formal support systems in managing the practical and emotional demands of caregiving. While psychological and informal supports were also described as helpful, they were not always sufficient on their own. Faith, optimism, and a sense of purpose emerged as key psychological resilience mechanisms. Informal networks provided emotional companionship and peer validation, particularly through community-based connections. Although some participants mentioned professionals, including social workers, as effective in linking families to formal supports, the findings highlight a broader need for integrated, multi-level interventions to sustain caregiver well-being. Applications: The study underscores the importance of coordinated collaboration among social, educational, and healthcare services to address the unique challenges of DBMD caregiving and to enhance family resilience and adaptation.