文献检索文档翻译深度研究
Suppr Zotero 插件Zotero 插件
邀请有礼套餐&价格历史记录

新学期,新优惠

限时优惠:9月1日-9月22日

30天高级会员仅需29元

1天体验卡首发特惠仅需5.99元

了解详情
不再提醒
插件&应用
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
高级版
套餐订阅购买积分包
AI 工具
文献检索文档翻译深度研究
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2025

患有妥瑞氏综合征的儿童及其照顾者如何与这种疾病共处?对定性证据的系统评价。

How do children with Tourette's syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence.

作者信息

Suh Hyo-Weon, Yoon Seok-In, Hong Sunggyu, Lee Hyun Woo, Lee Misun, Kim Jong Woo, Chung Sun-Yong

机构信息

Department of Neuropsychiatry, College of Korean Medicine, Kyung Hee University, Seoul, South Korea.

Department of Neuropsychiatry, Kyung Hee University Korean Medicine Hospital at Gangdong, Seoul, South Korea.

出版信息

Front Psychiatry. 2022 Sep 29;13:992905. doi: 10.3389/fpsyt.2022.992905. eCollection 2022.


DOI:10.3389/fpsyt.2022.992905
PMID:36245875
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9557735/
Abstract

BACKGROUND: Tourette's syndrome (TS) is a childhood neurodevelopmental disorder characterized by sudden, repetitive, involuntary, and irregular muscle movement and vocalization. Recently, non-pharmaceutical methods, such as behavioral therapy, psychotherapy, and deep brain stimulation, have been introduced as alternatives to pharmacological treatment for TS. This study aimed to systematically review and synthesize qualitative evidence on the experiences of children with TS and their caregivers. A meta-synthesis of qualitative evidence could help provide a comprehensive understanding of the challenges experienced by children with TS and their caregivers with the aim of providing more effective treatment and services for them. MATERIALS AND METHODS: A systematic search was conducted using MEDLINE/PubMed, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycARTICLES, and three Korean databases (Korean Medical Database, Research Information Sharing Service, and ScienceON) in July 2021. Studies were included if they collected and analyzed qualitative data from children with tic disorder or TS, or their caregivers. Qualitative research findings on the experiences and perspectives of children with TS and their caregivers were critically appraised and synthesized using the Joanna Briggs Institute methodology. RESULTS: Eight eligible studies were included. The findings from these studies (i.e., themes or subthemes of qualitative research) were aggregated into categories (a group of similar findings) and synthesized findings (a group of categorized findings). Ultimately, the 60 findings were aggregated into 15 categories. Finally, four synthesized findings were derived from the 15 categories: (i) continuation of challenging daily life, (ii) denying that TS causes emotional distress, (iii) accepting and understanding TS as part of oneself, and (iv) looking to the future. CONCLUSION: Children with TS and their caregivers experience physical and psychological distress and social deprivation. Avoiding and suppressing TS causes secondary distress such as guilt. However, seeking social support and accepting the disorder reduce the distress caused by symptoms and lays the foundation for later growth. Even in the face of adversity, children with TS and their caregivers find personal value and acquire a more open and optimistic attitude toward life. This review shows that acceptance-based therapy and social support should be provided for the treatment and management of TS.

摘要

背景:图雷特综合征(TS)是一种儿童神经发育障碍,其特征为突然、重复、不自主且不规则的肌肉运动和发声。最近,行为疗法、心理疗法和深部脑刺激等非药物方法已被引入,作为TS药物治疗的替代方案。本研究旨在系统回顾和综合关于TS患儿及其照料者经历的定性证据。定性证据的元综合有助于全面了解TS患儿及其照料者所面临的挑战,以便为他们提供更有效的治疗和服务。 材料与方法:2021年7月,使用MEDLINE/PubMed、EMBASE、护理及相关健康文献累积索引、PsycARTICLES以及三个韩国数据库(韩国医学数据库、研究信息共享服务平台和韩国科学在线)进行了系统检索。如果研究收集并分析了抽动障碍或TS患儿及其照料者的定性数据,则纳入该研究。使用乔安娜·布里格斯研究所的方法,对关于TS患儿及其照料者经历和观点的定性研究结果进行了严格评估和综合。 结果:纳入了八项符合条件的研究。这些研究的结果(即定性研究的主题或子主题)被汇总为类别(一组相似的结果)和综合结果(一组分类结果)。最终,60项结果被汇总为15个类别。最后,从这15个类别中得出了四项综合结果:(i)具有挑战性的日常生活的延续,(ii)否认TS会导致情绪困扰,(iii)接受并将TS理解为自身的一部分,以及(iv)展望未来。 结论:TS患儿及其照料者经历身体和心理困扰以及社会剥夺。回避和抑制TS会导致诸如内疚等继发性困扰。然而,寻求社会支持并接受该疾病可减轻症状所带来的困扰,并为后期成长奠定基础。即使面对逆境,TS患儿及其照料者也能找到个人价值,并对生活获得更开放和乐观的态度。本综述表明,应提供基于接纳的疗法和社会支持来治疗和管理TS。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/04b2ffbf6362/fpsyt-13-992905-g005.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/aae648da609f/fpsyt-13-992905-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/921f1c65c88a/fpsyt-13-992905-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/94fb4f294b9d/fpsyt-13-992905-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/396d2ca7045e/fpsyt-13-992905-g004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/04b2ffbf6362/fpsyt-13-992905-g005.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/aae648da609f/fpsyt-13-992905-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/921f1c65c88a/fpsyt-13-992905-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/94fb4f294b9d/fpsyt-13-992905-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/396d2ca7045e/fpsyt-13-992905-g004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b8a/9557735/04b2ffbf6362/fpsyt-13-992905-g005.jpg

相似文献

[1]
How do children with Tourette's syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence.

Front Psychiatry. 2022-9-29

[2]
How Suppressed Anger Can Become an Illness: A Qualitative Systematic Review of the Experiences and Perspectives of Hwabyung Patients in Korea.

Front Psychiatry. 2021-5-28

[3]
Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette syndrome: a systematic review and qualitative analysis.

Health Technol Assess. 2016-1

[4]
Navigating through incontinence: A qualitative systematic review and meta-aggregation of the experiences of family caregivers.

Int J Nurs Stud. 2021-11

[5]
Folic acid supplementation and malaria susceptibility and severity among people taking antifolate antimalarial drugs in endemic areas.

Cochrane Database Syst Rev. 2022-2-1

[6]
The experiences of midwives and nurses collaborating to provide birthing care: a systematic review.

JBI Database System Rev Implement Rep. 2015-11

[7]
Women's experience of menopause: a systematic review of qualitative evidence.

JBI Database System Rev Implement Rep. 2015-9-16

[8]
Psychosocial experiences in youth with Tourette syndrome: a systematic review and meta-synthesis.

Eur Child Adolesc Psychiatry. 2024-11

[9]
Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users' Experiences.

J Med Internet Res. 2020-11-3

[10]
A qualitative exploration of the daily experiences and challenges faced by parents and caregivers of children with Tourette's syndrome.

J Health Psychol. 2016-9-28

引用本文的文献

[1]
'For the love of God, just refer me': a co-produced qualitative study of the experiences of people with Tourette Syndrome and tic disorders accessing healthcare services in the UK.

BMJ Open. 2025-9-5

[2]
Can using the Cochrane RCT classifier in EPPI-Reviewer help speed up study selection in qualitative evidence syntheses? A retrospective evaluation.

Cochrane Evid Synth Methods. 2025-1-13

[3]
Communication and Psychosocial Functioning in Children With Tourette Syndrome: Parent-Reported Measures.

Int J Lang Commun Disord. 2025

[4]
A systematic review exploring perceptions of Tourette syndrome and tic disorders using the common-sense model of illness representations.

Psychol Health. 2025-5-14

[5]
Addressing equity, diversity, and inclusion in JBI qualitative systematic reviews: a methodological scoping review.

JBI Evid Synth. 2025-3-1

本文引用的文献

[1]
Letting Tourette's be: The importance of understanding lived experience in research and the clinic.

Dev Med Child Neurol. 2023-11

[2]
European clinical guidelines for Tourette syndrome and other tic disorders-version 2.0. Part IV: deep brain stimulation.

Eur Child Adolesc Psychiatry. 2022-3

[3]
European clinical guidelines for Tourette syndrome and other tic disorders-version 2.0. Part II: psychological interventions.

Eur Child Adolesc Psychiatry. 2022-3

[4]
Going Beyond the Catch-22 of Autism Diagnosis and Research. The Moral Implications of (Not) Asking "What Is Autism?".

Front Psychol. 2020-11-10

[5]
Social Camouflaging in Females with Autism Spectrum Disorder: A Systematic Review.

J Autism Dev Disord. 2021-7

[6]
Experiences of Tourette Syndrome Caregivers With Supportive Communication.

Qual Health Res. 2020-8

[7]
Is disclosing an autism spectrum disorder in school associated with reduced stigmatization?

Autism. 2020-4

[8]
Predictors of the Clinical Course of Tourette Syndrome: A Longitudinal Study.

J Child Neurol. 2019-12

[9]
Social stigma and self-perception in adolescents with tourette syndrome.

Adolesc Health Med Ther. 2019-6-11

[10]
Social adjustment experiences of adolescents with Tourette syndrome.

J Clin Nurs. 2018-7-23

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

推荐工具

医学文档翻译智能文献检索