家长对照顾大疱性表皮松解症患儿挑战的认知：一项定性研究。
Parents' perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study.
机构信息
Department of Pediatric Nursing, School of Nursing and Midwifery, Hamadan University of Medical Sciences, Hamadan, Iran.
Department of Midwifery, School of Nursing and Midwifery, Mother and Child Care Research Center Health Sciences & Technology Research Institute, Hamadan University of Medical Sciences, Hamadan, Iran.
出版信息
BMC Res Notes. 2024 Oct 10;17(1):302. doi: 10.1186/s13104-024-06968-5.
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.
目的
本研究旨在探讨父母对大疱性表皮松解症患儿的体验。因此，本研究采用描述性现象学定性研究方法，对来自伊朗西部 5 所医科大学附属医院的 17 名 EB 患儿的父母进行了研究。数据通过半结构式访谈收集。还使用了 COLAIZZI 方法对数据进行分析。
结果
本研究提取了三个主要主题：心理危机的侵袭、有生无活、全面支持，包括 10 个类别。这些孩子的父母是心理危机的目标，这些危机严重降低了他们的生活质量。在这方面，他们需要广泛的支持来改善他们的生活条件。因此，建议提供文化和制度背景，强调儿童尊严的所有组成部分。
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