Perceptions of Parents and Caregivers in New Zealand: Educational Experiences of their Children with Tourette Syndrome

IF 1.1 4区 教育学 Q3 EDUCATION, SPECIAL
R. Pine, Karin H. Bruckner, James F. Mbinta, Robyn Twemlow, S. Anderson
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引用次数: 0

Abstract

Tourette Syndrome (TS) is a neurological disorder estimated to affect around 1% of children worldwide. Although advances in pharmacological and behavioural treatments appear promising, there is a paucity of research, especially in New Zealand, where little is known about parents' and caregivers' attitudes and experiences. The current study aimed to explore parents' and caregivers' attitudes and experiences of education for their child diagnosed with TS in New Zealand. Participants were also asked about any changes in tics during the COVID- 19 lockdowns. Parents with a child diagnosed with TS and members of the Tourette's Association New Zealand's patient support association were recruited for the survey. In total, 75 parents agreed to participate in the anonymous online survey during February and March 2021. A thematic analysis of participants' qualitative responses was completed. Five distinct themes emerged from the data: (1) Accommodations (2) Separate Space (3) Tics' interference with Learning (4) Tics and COVID- 19 Lockdown, and (5) Recommendations. Understanding parents' attitudes towards and experiences with TS is essential when identifying recommendations for school personnel, peer educational programs and clinical pathways in New Zealand. Suggestions for future research are discussed.
新西兰父母和照顾者的看法:他们的儿童与抽动秽语综合症的教育经验
抽动秽语综合症(TS)是一种神经系统疾病,据估计全世界约有1%的儿童受到影响。尽管药理学和行为治疗方面的进展看起来很有希望,但研究却很缺乏,尤其是在新西兰,人们对父母和照顾者的态度和经历知之甚少。本研究旨在探讨新西兰父母和照顾者对诊断为TS的孩子的教育态度和经验。参与者还被问及在COVID- 19封锁期间抽搐的任何变化。被诊断患有TS的孩子的父母和新西兰图雷特氏症协会的患者支持协会的成员被招募参加这项调查。共有75名家长同意在2021年2月至3月期间参加这项匿名在线调查。对参与者的定性回答进行了专题分析。数据中出现了五个不同的主题:(1)住宿;(2)分隔空间;(3)抽搐对学习的干扰;(4)抽搐与COVID- 19封锁;(5)建议。在新西兰,了解家长对TS的态度和经验对于确定学校人员、同伴教育项目和临床途径的建议至关重要。最后对今后的研究提出了建议。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
3.00
自引率
9.10%
发文量
41
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