儿童期不明原因突然死亡后家庭的需求和经历:一项定性研究。

IF 2.3 4区 医学 Q2 PEDIATRICS
Emily Cooper, Jonathan Holmes, Nikki Speed, Joanna Jane Garstang
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引用次数: 0

摘要

背景:儿童期不明原因猝死(SUDC)对家庭来说是一种罕见而毁灭性的经历。在联合王国,由警察、卫生和社会保健机构对儿童突然、意外死亡进行多机构调查是一项法定要求,目的是查明死亡的全部原因。在整个可能需要几个月的调查过程中,应为家属分配丧亲关键工作人员以提供支持。以往的研究主要集中在对婴儿猝死的多机构调查上,对年龄较大的儿童死亡时父母的经历知之甚少。方法:通过SUDC-UK慈善机构及其邮件列表和口头传播招募2018-2022年期间死于SUDC的英国1至17岁儿童的丧亲父母。2023年进行了半结构化访谈。访谈记录进行了专题分析。结果:在2023年对来自英格兰、苏格兰和北爱尔兰的20个家庭的父母进行了采访。确定了四个关键主题:关键工作人员的重要性、了解创伤情况的沟通、专业人员的主动性以及为家庭提供医疗检查。家长重视关键工作者,但只有12/20的家庭分配了关键工作者。沟通和语言很重要;家属经常会接到意想不到的电话,尤其是关于验尸结果的电话。家长们觉得他们必须主动向缺乏相关知识的专业人士解释SUDC。家长们希望主动为他们的家庭提供医疗检查。结论:在对孩子意外猝死的调查期间和之后,每个家庭都必须从专业人员那里得到迅速、积极、有知识的沟通。这将帮助他们度过这个过程,减轻沟通不畅对他们悲伤的影响。虽然所有的父母都表示他们想找出孩子死亡的原因,但他们也确定了调查过程的一致性和有效性的关键改进。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Needs and experiences of families after a sudden unexplained death in childhood: a qualitative study.

Background: Sudden unexplained death in childhood (SUDC) is a rare and devastating experience for families. In the UK, multi-agency investigation by police, health and social care of sudden, unexpected child deaths is a statutory requirement aiming to identify full causes for deaths. Families should be allocated bereavement keyworkers for support throughout the investigative process which can take several months. Previous research has focused on multi-agency investigation of sudden infant deaths, with little known about parents' experiences for deaths of older children.

Methods: Bereaved parents of children in the UK, aged 1 to 17 years who died from SUDC during 2018-2022, were recruited through SUDC-UK charity and their mailing list and word of mouth. Semi-structured interviews were conducted in 2023. Interview transcripts underwent thematic analysis.

Results: Interviews were conducted with parents from 20 families across England, Scotland and Northern Ireland in 2023. Four key themes were identified: the importance of keyworkers, trauma-informed communication, proactivity from professionals and provision of medical screening for families. Keyworkers were valued by parents, but only 12/20 families had keyworkers allocated. Communication and language were important; families were often distressed by unexpected telephone calls particularly relating to post-mortem results. Parents felt they had to be proactive explaining about SUDC to professionals who lacked knowledge of the condition. Parents wanted medical screening to be proactively offered for their families.

Conclusions: Every family must receive swift, proactive, knowledgeable communication from professionals, during and beyond the investigation into their child's sudden unexpected death. This will help them through the process and mitigate the impact of poor communication on their grief. While all parents expressed that they wanted to find out why their child died, they also identified key improvements to the consistency and effectiveness of the investigation process.

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来源期刊
BMJ Paediatrics Open
BMJ Paediatrics Open Medicine-Pediatrics, Perinatology and Child Health
CiteScore
4.10
自引率
3.80%
发文量
124
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