1. Parents' perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study.
- Author
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Mohammadi F, Masoumi SZ, Oshvandi K, Sobhan MR, and Bijani M
- Subjects
- Humans, Male, Female, Child, Adult, Iran, Child, Preschool, Adolescent, Middle Aged, Caregivers psychology, Perception, Parents psychology, Epidermolysis Bullosa psychology, Epidermolysis Bullosa therapy, Qualitative Research, Quality of Life psychology
- Abstract
Objective: The present study was investigate parents' experiences of children with Epidermolysis bullosa. So, this descriptive phenomenological qualitative study was conducted on 17 parents of children with EB from five hospitals affiliated with the University of Medical Sciences, west of Iran. Data was collected through semi-structured interviews. COLAIZZI's method was also used to analyze the data., Results: Three main themes were extracted in this study: invasion of psychological crisis, alive but no living, and comprehensive support, including 10 categories. The parents of these children are the target of psychological crises that severely reduce their quality of life. In this regard, they need extensive support to improve their living conditions. Therefore, it is suggested to provide cultural and institutional contexts in which all components of the children's dignity are emphasized., (© 2024. The Author(s).)
- Published
- 2024
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