理解重复行为:一项针对自闭症幼儿家长及照料者的临床与成本效益多中心随机对照试验。

Understanding Repetitive Behaviours: A clinical and cost-effectiveness, multi-site randomised controlled trial of a group for parents and carers of young autistic children.

作者信息

Grahame Victoria, Kernohan Ashleigh, Kharati Ehsan, Mathias Ayesha, Butcher Chrissie, Dixon Linda, Fletcher-Watson Sue, Garland Deborah, Glod Magdalena, Goodwin Jane, Heron Saoirse, Honey Emma, Le Couteur Ann, Mackie Leila, Maxwell Jessica, Montgomery Lewis, Ogundimu Emmanuel, Probert Helen, Riby Deborah, Rob Priyanka, Rogan Leanne, Tavernor Laura, Vale Luke, Webb Elspeth Imogen, Weetman Christopher, Rodgers Jacqui

机构信息

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (CNTW) UK.

Newcastle University, UK.

出版信息

Autism. 2025 Aug;29(8):1998-2015. doi: 10.1177/13623613251333175. Epub 2025 Jun 9.

Abstract

Restricted and repetitive behaviours vary greatly between autistic people. Some are a source of pleasure or create opportunities for learning; others may be detrimental in day-to-day life or cause harm. We have developed, in close collaboration with parents/carers, the Understanding Repetitive Behaviours programme, designed for families of young autistic children, to help them recognise, understand and respond sensitively to their child's impactful restricted and repetitive behaviours. This study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Understanding Repetitive Behaviours parent programme versus a psychoeducation programme (equivalent to current best practice), learning about autism. Participants were parents/carers, with an autistic child aged between 3-9 years and 11 months. The study was delivered across three sites in England and Scotland. Analyses were completed using intention-to-treat principles. Two hundred and twenty seven families were randomised (113 in LAA; 114 in Understanding Repetitive Behaviours arm). No differences were found between the arms on the primary outcome measure (The Clinical Global Impression - Improvement scale). Analysis of secondary outcomes indicated that children in the Understanding Repetitive Behaviours arm were more likely to be rated as responders in target impactful restricted and repetitive behaviours at 24 weeks but that this effect was not maintained at 52 weeks. Improvements in parent and family functioning were apparent, with no evidence of differences between the arms. The study reconfirms that it is important that clinicians consider both restricted and repetitive behaviours and social communication needs of autistic children with parents when planning appropriate support.Lay abstractAutistic children, frequently repeat the same behaviours over and over, have specific interests or like things to stay the same. These behaviours and interests are often fun and helpful. However, sometimes they can impact negatively on day-to-day life or put the child at risk of harm. Working closely with parents of autistic children, we developed an 8-week programme (Understanding Repetitive Behaviours) to help them recognise and understand these behaviours. This study aimed to find out whether the understanding repetitive behaviour programme was helpful and good value for money. Two hundred and twenty seven families were allocated by chance to receive either Understanding Repetitive Behaviours or a learning about autism programme. When experts made judgements about whether children showed positive changes across various measures, and these were analysed, there were no differences between the programmes. However, parents who attended the Understanding Repetitive Behaviours programme reported improvement in one of their child's specific repetitive behaviour (selected to be the main focus of the Understanding Repetitive Behaviours programme) at 24 weeks after the end of the programme. Parents who attended either programme reported more confidence, greater wellbeing and less stress up to 1 year after the end of the study.

摘要

自闭症患者的受限和重复行为差异很大。有些行为是愉悦的来源或创造学习机会;而另一些行为在日常生活中可能有害或造成伤害。我们与家长/照料者密切合作,开发了“理解重复行为”项目,该项目专为自闭症幼儿家庭设计,旨在帮助他们识别、理解并敏感应对孩子那些有影响的受限和重复行为。本研究是一项关于“理解重复行为”家长项目与一项心理教育项目(等同于当前最佳实践,内容是了解自闭症)的临床及成本效益多中心随机对照试验。参与者为家长/照料者,其自闭症孩子年龄在3至9岁11个月之间。该研究在英格兰和苏格兰的三个地点开展。分析采用意向性分析原则。227个家庭被随机分组(113个家庭进入“了解自闭症”组;114个家庭进入“理解重复行为”组)。在主要结局指标(临床总体印象-改善量表)上,两组之间未发现差异。对次要结局的分析表明,“理解重复行为”组的孩子在24周时更有可能被评为在目标有影响的受限和重复行为方面有反应者,但这种效果在52周时未持续。家长和家庭功能有明显改善,两组之间没有差异的证据。该研究再次证实,临床医生在规划适当支持时,考虑自闭症儿童的受限和重复行为以及与家长沟通的社交需求非常重要。

摘要

自闭症儿童经常反复重复相同行为,有特定兴趣或喜欢事物保持不变。这些行为和兴趣通常有趣且有帮助。然而,有时它们会对日常生活产生负面影响或使孩子面临伤害风险。我们与自闭症儿童家长密切合作,开发了一个为期8周的项目(“理解重复行为”)来帮助他们识别和理解这些行为。本研究旨在了解“理解重复行为”项目是否有帮助且性价比高。227个家庭被随机分配接受“理解重复行为”项目或了解自闭症项目。当专家对孩子在各项指标上是否有积极变化进行判断并分析时,两个项目之间没有差异。然而,参加“理解重复行为”项目的家长报告说,在项目结束24周后,他们孩子的一种特定重复行为(被选为“理解重复行为”项目的主要关注对象)有改善。参加任一项目的家长在研究结束后长达1年的时间里都报告说更有信心、幸福感更强且压力更小。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3188/12255847/a82a7f44a287/10.1177_13623613251333175-fig1.jpg

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