父母在孩子患绝症的最后阶段的经历。

IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Health Pub Date : 2023-07-01 DOI:10.1177/13634593211046850
Bernadetta Janusz, Maciej Walkiewicz
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引用次数: 0

摘要

这篇文章在阈限理论的背景下,描述了父母对孩子最终致命疾病的经历,因为它在医疗的连续阶段展开。这些父母(N = 23)在孩子死后1-4年接受了采访。研究方法包括与父母进行叙述性访谈,以获得儿童疾病展开时的自发叙述。本研究主要采用扎根理论方法,包括父母话语的叙事性和表演性两个方面。研究结果提供了对常见的父母经历的主要领域和过程的洞察,比如被困在永恒和模糊中的普遍感觉。家长报告的其他状态包括在距离和参与之间摇摆,以及与医务人员和医疗系统的二元关系:在协调和不协调之间摇摆。这项研究表明,重要的是要把这种诊断作为一个过程,而不是一次性的事件。模糊感被视为一种必要的父母应对机制,而永恒感给父母一种独特的时间感,在这种时间感中他们不必考虑孩子可能即将到来的死亡。
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Parental experiences of the liminal period of a child's fatal illness.

The article offers a description of parents' experiences of their child's ultimately fatal illness as it unfolds over the successive stages of medical treatment, in the context of the liminality theory. The parents (N = 23) were interviewed 1-4 years after their child's death. The research method involved conducting narrative interviews with parents in order to obtain a spontaneous narration of the child's illness as it unfolded. The grounded theory approach, including the narrative and performative aspects of such parental utterances, was applied as the main research strategy. The results provide insight into the main areas and processes of common parental experiences, such as the pervasive sense of becoming trapped in timelessness and ambiguity. Further states reported by parents included oscillating between a distancing stance and involvement, and a dualistic relationship with medical staff and the medical system: between alignment and disharmony. The study indicates the importance of treating delivery of such a diagnosis as a process rather than as a one-time event. The sense of ambiguity is treated as a kind of necessary parental coping mechanism, whilst the sense of timelessness gives parents a unique sense of time in which they do not have to think about the child's potentially imminent death.

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来源期刊
Health
Health Multiple-
CiteScore
4.90
自引率
0.00%
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0
期刊介绍: Health: is published four times per year and attempts in each number to offer a mix of articles that inform or that provoke debate. The readership of the journal is wide and drawn from different disciplines and from workers both inside and outside the health care professions. Widely abstracted, Health: ensures authors an extensive and informed readership for their work. It also seeks to offer authors as short a delay as possible between submission and publication. Most articles are reviewed within 4-6 weeks of submission and those accepted are published within a year of that decision.
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