فهرست نشریات علمی دسترسی آزاد ایران

Background: Epidermolysis Bullosa (EB) is a rare genetic disorder characterized by skin fragility, blistering, and chronic wounds. Caring for a child with EB presents substantial physical, psychological, and financial challenges for parents. Identifying factors that facilitate parental adaptation can inform targeted interventions, enhancing both parents’ quality of life and the care provided to affected children.Objectives: This study aimed to explore the facilitators of adaptation among parents of children with EB.Methods: A qualitative study was conducted from September 2024 to March 2025 in Urmia, northwest Iran. Seventeen parents of children with EB were purposively recruited, and data were collected through in-depth, semi-structured individual interviews. The data were analyzed using the conventional content analysis approach described by Lundman and Graneheim (2004), with MAXQDA software (version 10) supporting data management. Trustworthiness was ensured through the four criteria proposed by Lincoln and Guba.Results: Seventeen parents participated, with mean ages of 37.76±7.76 years for parents and 9.05±3.45 years for children. Analysis of participants' experiences yielded one overarching theme, five categories, 17 subcategories, and 82 codes. The main theme emerged as "Supportive Wings of Adaptation." The five categories included: 1) Constructive child personality, 2) Supportive social networks, 3) Supportive family, 4) Spiritual soothers, and 5) Reputable treatment and care resources. Conclusion: The findings highlight a multi-dimensional support network as essential for parental adaptation to raising a child with EB. Practical interventions may include structured in-person and virtual group education, spiritual and psychological counseling, and the implementation of holistic care models.