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父母护理的经验在表皮溶解牛皮:一个现象学研究
Hassan Khalili1, Hossein Karimi Moonaghi2, Hamid Reza Kianifar3
1Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran.
概括
照顾患有牛皮膜溶解 (EB) 的孩子会对父母产生深远的影响,造成混乱,困难,孤立和家庭痛苦. 了解这些经历对于为面对这种罕见遗传疾病的家庭提供适当支持至关重要.
科学领域:
- 医学遗传学 医学遗传学
- 儿科护理 儿科护理
- 心理社会支持 心理社会支持
背景情况:
- 牛皮表皮溶解 (EB) 是一种罕见的遗传性疾病,导致严重的皮肤脆弱性.
- 照顾患有EB的儿童对家庭来说是一个独特和持续的挑战.
- 对于父母照顾EB儿童的日常生活经验,人们的理解有限.
研究的目的:
- 探讨伊朗父母照顾患有表皮溶解症的儿童的实践经验.
- 了解EB护理人员面临的多方面的挑战.
- 阐明EB对家庭单位的心理社会影响.
主要方法:
- 在2023年2月至11月期间进行的现象学研究.
- 与EB儿童的10名父母 (3名父亲,7名母亲) 进行了面对面的半结构面试.
- 数据使用Van Manen方法与MAXQDA软件进行分析.
主要成果:
- 护理人员表示,他们对护理和治疗方案感到迷和困惑.
- 父母描述自己被困在一个无休止的护理困难的循环中.
- 经历不可避免的自我隔离和家庭生活的恶化是重要的主题.
结论:
- 带有EB儿童的家庭照顾者遇到实质性的身体,心理和社会困难.
- 与照顾EB儿童相关的责任会导致严重的压力.
- 了解护理人员的经验对于开发针对罕见疾病的有针对性的支持系统至关重要.
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