Suh Hyo-Weon, Yoon Seok-In, Hong Sunggyu, Lee Hyun Woo, Lee Misun, Kim Jong Woo, Chung Sun-Yong
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.
Front Psychiatry. 2022 Sep 29;13:992905. doi: 10.3389/fpsyt.2022.992905. eCollection 2022.
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.
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。
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