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家长们在 COVID-19 大流行期间表达了他们照顾有特殊医疗需求的孩子的经历。

Parents voice their experiences of caring for children with special healthcare needs amid the COVID-19 pandemic.

机构信息

Texas Woman's University, Nelda C. Stark College of Nursing, Houston Center, 6700 Fannin Street, Houston, TX 77030, USA.

Texas Woman's University, Nelda C. Stark College of Nursing, Houston Center, 6700 Fannin Street, Houston, TX 77030, USA.

出版信息

J Pediatr Nurs. 2023 Jul-Aug;71:e104-e111. doi: 10.1016/j.pedn.2023.05.001. Epub 2023 May 5.

Abstract

PURPOSE

The purpose of this study was to understand the experiences of parents and caregivers of children with special healthcare needs during the COVID-19 pandemic.

DESIGN AND METHODS

In this descriptive phenomenological study, the researchers used purposive and snowball sampling to recruit nineteen participants, ranging in age from 21 to 55 years of age until saturation was established. Colaizzi's method guided data analysis. Iterative examination of the interview transcripts, an audit trail, bracketing, and validation of findings with a subset of participants established trustworthiness.

RESULTS

Navigating the COVID-19 Pandemic was the overarching theme. Four major themes emerged under Navigating the COVID-19 Pandemic as follows: Disruptions in Daily Life, Shifts in Daily Life, Innovations in Daily Life, and Surprising Silver Linings.

CONCLUSION

This study elucidated an in-depth understanding of the positive and negative impacts of the pandemic on the lives of families living with a child with special needs. The COVID-19 pandemic profoundly affected families and parenting approaches. Parents of children with special healthcare needs in this study found day-to-day living especially difficult in similar and unique ways. For virtually all parents the pandemic added new challenges in meeting their child's physical, mental, social, and educational needs. Parents and caregivers revealed innovative ways of maintaining a sense of normalcy during the height of the pandemic.

PRACTICE IMPLICATIONS

These findings demonstrate the importance of developing interventions and creating public health policies as we move beyond the current pandemic and plan for potential outbreaks in the future.

摘要

目的

本研究旨在了解 COVID-19 大流行期间有特殊医疗需求的儿童的父母和照顾者的经历。

设计和方法

在这项描述性现象学研究中,研究人员使用目的抽样和滚雪球抽样招募了 19 名参与者,年龄在 21 至 55 岁之间,直到达到饱和。Colaizzi 的方法指导数据分析。反复检查访谈记录、审核追踪、对发现进行分类和用一部分参与者进行验证,以建立可信度。

结果

应对 COVID-19 大流行是一个总主题。在应对 COVID-19 大流行下出现了四个主要主题:日常生活的中断、日常生活的转变、日常生活的创新和意外的一线希望。

结论

本研究深入了解了大流行对特殊需求儿童家庭生活的积极和消极影响。COVID-19 大流行对家庭和育儿方式产生了深远的影响。本研究中特殊医疗需求儿童的父母发现日常生活特别困难,其方式既有相似之处,也有独特之处。对几乎所有的父母来说,大流行在满足孩子的身体、心理、社会和教育需求方面增加了新的挑战。父母和照顾者揭示了在大流行高峰期保持正常感的创新方法。

实践意义

这些发现表明,在我们从当前的大流行中走出来并为未来潜在的疫情做好准备时,制定干预措施和制定公共卫生政策非常重要。

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