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先天性心脏病患儿的兄弟姐妹在 2019 冠状病毒病期间的体验:一项定性访谈研究。

Experiences of siblings of children with congenital heart disease during Coronavirus disease 2019; A qualitative interview study.

机构信息

Institute of Health and Social Sciences, London South Bank University, 103, Borough Road, London SE1 OAA, United Kingdom.

Department of Nursing, School of Health Sciences, The University of Melbourne, Victoria 3010, Australia.

出版信息

J Pediatr Nurs. 2022 Mar-Apr;63:96-101. doi: 10.1016/j.pedn.2021.12.019. Epub 2022 Jan 19.

DOI:10.1016/j.pedn.2021.12.019
PMID:35065871
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8767808/
Abstract

PURPOSE

To explore siblings' perceptions of having a brother or sister with congenital heart disease in the UK during the COVID-19 pandemic.

DESIGN AND METHODS

Siblings of children with congenital heart disease aged 8-17 years old were interviewed via video call technology between September 2020 and February 2021. We conducted reflexive thematic analysis of these interviews to generate themes.

FINDINGS

Interviews took place with 17 siblings, predominantly of white ethnicity n = 15 (86%). Most siblings interviewed were first born in the family n = 15 (88%), and most children with CHD were the youngest n = 15(88%). Four themes were generated; My sibling is vulnerable, what does this mean for my family, I have a responsibility to protect my brother or sister, our family time during the pandemic and adjustment and adaptations to pandemic life.

CONCLUSIONS

Siblings identified difficult aspects of the pandemic and these related to concerns about their brother's or sister's vulnerability, family impact, and keeping their sibling safe. They also identified adjustments they made to keep their family functioning throughout the COVID-19 pandemic. Despite the worry and uncertainty siblings experienced, they valued increased family cohesion which helped to mitigate some challenges of the restrictions imposed in the UK.

PRACTICE IMPLICATIONS

Honest and open communication is valued by siblings. It is vital to ensure siblings receive the support they need to ensure they keep up with their schooling and social commitments as pandemic related restrictions ease.

摘要

目的

探讨英国 COVID-19 大流行期间,先天性心脏病患儿的兄弟姐妹的感受。

设计和方法

2020 年 9 月至 2021 年 2 月,通过视频通话技术对 8-17 岁先天性心脏病患儿的兄弟姐妹进行访谈。我们对这些访谈进行了反思性主题分析,以生成主题。

结果

共对 17 名兄弟姐妹进行了访谈,他们主要是白人种族 n = 15(86%)。大多数接受采访的兄弟姐妹都是家中的老大 n = 15(88%),大多数患有 CHD 的孩子都是最小的 n = 15(88%)。生成了四个主题:我的兄弟姐妹很脆弱,这对我的家庭意味着什么,我有责任保护我的兄弟或姐妹,我们在大流行期间的家庭时间以及对大流行生活的调整和适应。

结论

兄弟姐妹确定了大流行的困难方面,这些方面涉及对兄弟姐妹脆弱性、家庭影响以及保护兄弟姐妹安全的担忧。他们还确定了在 COVID-19 大流行期间为保持家庭运转而做出的调整。尽管兄弟姐妹经历了担忧和不确定性,但他们重视增强的家庭凝聚力,这有助于减轻英国实施限制所带来的一些挑战。

实践意义

兄弟姐妹重视坦诚和开放的沟通。至关重要的是,要确保兄弟姐妹获得他们所需的支持,以确保他们在与大流行相关的限制放宽后跟上学业和社交活动。

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本文引用的文献

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Worse Hospital Outcomes for Children and Adults with COVID-19 and Congenital Heart Disease.COVID-19 合并先天性心脏病患儿和成人的预后更差。
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What have we learned about positive changes experienced during COVID-19 lockdown? Evidence of the social patterning of change.在 COVID-19 封锁期间,我们对所经历的积极变化有了哪些了解?变化的社会模式证据。
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