Parents' perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study.
Caring
Challenge
Children
Epidermolysis bullosa
Qualitative study
Journal
BMC research notes
ISSN: 1756-0500
Titre abrégé: BMC Res Notes
Pays: England
ID NLM: 101462768
Informations de publication
Date de publication:
10 Oct 2024
10 Oct 2024
Historique:
received:
04
07
2024
accepted:
04
10
2024
medline:
11
10
2024
pubmed:
11
10
2024
entrez:
10
10
2024
Statut:
epublish
Résumé
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.
Identifiants
pubmed: 39390602
doi: 10.1186/s13104-024-06968-5
pii: 10.1186/s13104-024-06968-5
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
302Subventions
Organisme : Hamadan University of Medical Sciences
ID : 1401.217
Organisme : Hamadan University of Medical Sciences
ID : 1401.217
Organisme : Hamadan University of Medical Sciences
ID : 1401.217
Organisme : Hamadan University of Medical Sciences
ID : 1401.217
Informations de copyright
© 2024. The Author(s).
Références
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