Parents' perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study

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 c...

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Bibliographic Details
Published in:BMC research notes 2024-10, Vol.17 (1), p.302-8, Article 302
Main Authors: Mohammadi, Fateme, Masoumi, Seyedeh Zahra, Oshvandi, Khodayar, Sobhan, Mohammad Raza, Bijani, Mostafa
Format: Article
Language:English
Subjects:
Adolescent
Adult
Analysis
Beliefs, opinions and attitudes
Care and treatment
Care of the sick
Caregivers - psychology
Caring
Challenge
Child
Child, Preschool
Children
Diseases
Epidermolysis bullosa
Epidermolysis Bullosa - psychology
Epidermolysis Bullosa - therapy
Female
Humans
Iran
Male
Middle Aged
Parents
Parents - psychology
Perception
Psychological aspects
Qualitative Research
Qualitative study
Quality of Life - psychology
Social aspects
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Summary: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. 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.
ISSN:1756-0500
1756-0500
DOI:10.1186/s13104-024-06968-5