家庭护理人员对儿科囊性纤维化信息的需求:一项定性研究
Samara Macedo Cordeiro1, Helen Bras da Silva2, Fernanda Machado Silva-Rodrigues3
1Faculty of Nursing, State University of Campinas (Unicamp), Campinas - SP, Brazil.
概括
患有囊性纤维化 (CF) 儿童的家庭照顾者需要全面的信息和情感支持. 整合患者和以家庭为中心的护理 (PFCC) 对于有效的CF管理至关重要.
科学领域:
- 儿科肺病学 儿科肺病学
- 家庭医学 家庭医学 家庭医学
- 健康心理学 心理健康心理学
背景情况:
- 囊性纤维化 (CF) 严重影响家庭,需要采取整体的护理方法.
- 患者和以家庭为中心的护理 (PFCC) 框架对于解决管理慢性儿童疾病的家庭的多方面的需求至关重要.
- 了解家庭护理人员的具体信息要求对于优化护理提供至关重要.
研究的目的:
- 探索家庭护理人员对患有囊性纤维化 (CF) 的儿童的信息需求.
- 研究如何在以患者和家庭为中心的护理 (PFCC) 框架内满足这些需求.
- 确定与信息来源和CF护理中情感支持的必要性相关的关键主题.
主要方法:
- 采用了一种描述性的定性研究设计.
- 在巴西一家公立医院采访了13名CF儿童的家庭照顾者.
- 以PFCC原则为指导的内容分析被用于分析采访数据.
主要成果:
- 护理人员需要有关CF管理的各种信息,包括医疗方面和日常护理.
- 人们寻求从医疗保健专业人员那里获取信息,也寻求社交媒体等非正式道.
- 除了信息外,照顾者表示他们非常需要情感支持和以家庭为中心的综合照顾.
结论:
- 家庭护理人员在CF的信息需求是复杂和动态的.
- 实施PFCC原则,特别是加强信息共享和情感支持,对于有效的CF管理至关重要.
- 家庭积极参与决策过程对于全面的CF护理至关重要.
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