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患有慢性儿科疾病儿童的兄弟姐妹的经历:定性系统评价。

Experiences of siblings of children with chronic pediatric conditions: a qualitative systematic review.

机构信息

Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, Level 5, Centre for Translational Medicine, National University of Singapore, Block MD6,14 Medical Drive, Queenstown, Singapore.

出版信息

Eur J Pediatr. 2024 Nov 26;184(1):44. doi: 10.1007/s00431-024-05826-7.

Abstract

UNLABELLED

The needs of well siblings of children with chronic pediatric conditions (CPCs) are often overlooked as parents tend to direct their attention toward the child with CPC. This highlights the need to explore the experiences of these siblings to better inform the implementation of healthcare services. To consolidate the most up-to-date qualitative evidence regarding well siblings' perceptions and experiences of living with children with CPC. This qualitative systematic review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. The search was conducted on eight electronic databases from their respective dates of inception to March 2024. Sandelowski and Barroso's (2007) two-step approach was used to synthesize findings. Review findings were assessed using the Grading of Recommendations Assessment, Development, and Evaluation-Confidence in the Evidence from Reviews of Qualitative research approach. In total, 23 studies (published between 2014 and 2023) were included. This review included 269 well siblings (aged between 7 and 23 years old) and 74 parents (mostly mothers). Four highly connected themes were identified: (1) A whirlpool of emotions, (2) Coping behaviors, (3) Growing up way too early, and (4) Doing and hoping for the best.

CONCLUSION

This review emphasizes the necessity for healthcare professionals to attend to the emotional and psychosocial needs of well siblings, and educate parents on how to better address well siblings' needs. Future research could look into the experiences of siblings of children with less common CPCs.

WHAT IS KNOWN

• The specific needs of well siblings of children with chronic pediatric conditions are unexplored. • Well siblings have difficulty comprehending and adapting to their sibling's chronic condition upon diagnosis.

WHAT IS NEW

• Interactions between family members and healthcare professionals play a crucial role in shaping how well siblings understand their siblings' chronic conditions. • Well siblings adopt various ways to help them cope with these challenging circumstances. • Well siblings are at risk for psychological distress upon learning about their sibling's chronic conditions.

摘要

目的

本研究旨在综合现有关于健康同胞对患有慢性儿科疾病(CPC)儿童生活体验的定性证据,以更好地为医疗保健服务的实施提供信息。

设计

本定性系统综述遵循系统评价和荟萃分析报告的首选条目指南进行。

数据来源

从各数据库建库时间至 2024 年 3 月,在 8 个电子数据库中进行了检索。

纳入标准

纳入研究的对象为 CPC 患儿的健康同胞(年龄 7-23 岁),研究类型为定性研究,语言为英文或中文。

数据提取

两位作者独立筛选文献、提取资料并评估纳入研究的偏倚风险。

综合方法

采用两步法(Sandelowski & Barroso, 2007)对结果进行综合。

结果

共纳入 23 项研究(发表于 2014-2023 年),包含 269 名健康同胞(年龄 7-23 岁)和 74 名父母(大多数为母亲)。研究结果主要涉及以下 4 个主题:(1)情绪的漩涡;(2)应对行为;(3)过早成长;(4)尽力而为并心怀希望。

结论

本研究强调医疗保健专业人员有必要关注健康同胞的情感和心理社会需求,并教育父母如何更好地满足健康同胞的需求。未来的研究可以关注患有罕见 CPC 儿童的同胞的经历。

局限性

纳入研究的质量和方法存在异质性。

总结

健康同胞对患有 CPC 儿童的生活体验尚未得到充分探索。确诊后,健康同胞往往难以理解和适应其兄弟姐妹的慢性疾病。家庭成员和医疗保健专业人员之间的相互作用对健康同胞理解其兄弟姐妹慢性疾病的方式起着关键作用。健康同胞采用各种方式来帮助自己应对这些具有挑战性的情况。当得知其兄弟姐妹患有慢性疾病时,健康同胞可能会面临心理困扰的风险。

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