被诊断为血友病的孩子的父母的内:一个定性研究
Aycin Ezgi Onel1, Dilek Zengin1, Hatice Bal Yilmaz1
1Nursing Faculty, Department of Pediatric Nursing, Ege University, İzmir, Türkiye.
Journal of pediatric nursing
|November 9, 2025
概括
父母对血友病的内源于遗传因素,影响了家庭的福祉. 心理社会支持,信息和同情的护理对于弹性至关重要.
科学领域:
- 儿科血液学 儿科血液学
- 心理社会护理 心理社会护理
- 定性研究是指质量研究.
背景情况:
- 血友病儿童的父母经历了重大的情感和心理挑战.
- 血友病的遗传性往往会引起父母的内,并影响家庭动态.
- 了解这些父母的经历对于加强心理社会支持和医疗保健至关重要.
研究的目的:
- 探索和描述父母照顾患有血友病的孩子的内经历.
- 在小儿血友病护理的情感景观中将父母的内置于背景.
主要方法:
- 使用深入的,半结构化的访谈进行描述性的定性设计.
- 在一所大学医院的儿童血液学诊所采访了13名患有血友病儿童的父母.
- 使用内容分析来解释数据,并遵循COREQ的指导方针.
主要成果:
- 关键主题包括情绪/心理反应 (焦虑,震惊),内/责任 (自责,系统批评),改变日常生活/家庭动态,以及应对/支持需求.
- 父母的内与血友病的遗传基础密切相关.
- 父母报告说,这对家庭角色,社会生活和对孩子未来的担忧产生了重大影响.
结论:
- 父母对血友病的内会对心理健康,人际关系和社会参与产生负面影响.
- 获得信息,同行支持和专业服务可以减轻内.
- 开发有针对性的心理社会计划和同情的沟通对于加强儿童血友病护理中的家庭弹性至关重要.
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