"他们在这里,他们仍然很重要":对丧亲父母遗留经验和感知的定性研究
Maile T Jones1, Elena Albanese2, Jessika C Boles1,2
1Monroe Carell Jr. Children's Hospital at Vanderbilt, Patient- and Family-Centered Care Department, Nashville, TN, USA.
Palliative medicine
|June 13, 2023
概括
丧亲的父母将孩子的遗产定义为超越纪念品,专注于持久的存在和影响. 目前的儿科息护理干预需要个性化,以符合这些家庭的看法.
科学领域:
- 儿科缓和护理 儿科缓和护理
- 达纳图学 (Thanatology) 是一种学术学科.
- 定性研究是指质量研究.
背景情况:
- 儿科医疗保健中的遗留建筑干预措施通常用于儿童生命的末期.
- 人们对丧亲家庭如何看待遗产的概念知之甚少.
- 新兴的研究表明,遗产不仅仅是纪念品,还包括品质和经验.
研究的目的:
- 探索遗留的父母/照顾者的遗留感知和经验.
- 在儿科息治疗中提供以遗产为导向的干预措施的信息.
主要方法:
- 使用半结构面试进行的定性,现象学研究.
- 基于社会建设主义的认识论和心理现象学.
- 采访使用诱导式,开放式编码进行分析.
主要成果:
- 丧亲的父母通过特征,影响和持久的存在来定义遗产.
- 遗产的表现包括有形物品,经验,传统,仪式和利他主义.
- 影响遗留经验的因素包括孩子的死亡和悲伤过程.
结论:
- 丧亲父母对遗产的定义和经验与当前的医疗保健干预措施相冲突.
- 需要从标准化转向个性化遗留护理.
- 个性化评估和干预对于以患者和家庭为中心的儿科息护理至关重要.
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