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Lookup NU author(s): Dr Ashleigh KernohanORCiD, Ayesha Mathias, Chrissie Butcher, Dr Magda Glod, Dr Jane GoodwinORCiD, Professor Ann Le Couteur, Priyanka Rob, Professor Luke Vale, Christopher Weetman, Emerita Professor Jacqueline Rodgers
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Background: Restricted and repetitive behaviours vary greatly between autistic people. Some are a source of pleasure or create opportunities for learning; however, others are functionally impactful and may cause harm. We have developed a parent/carer group intervention (Understanding Repetitive Behaviours), for families of young autistic children, to help parents/carers to recognise, understand and respond to their child's functionally impactful restricted and repetitive behaviours. Objectives: To evaluate the clinical and cost-effectiveness of the Understanding Repetitive Behaviours intervention. Design: A clinical and cost-effectiveness, multisite randomised controlled trial of the Understanding Repetitive Behaviours intervention versus a psychoeducation parent/carer group Learning About Autism (n = 250; 125 intervention/125 psychoeducation; ~ 83/site). Analyses completed using intention-to-treat principles. Setting: Three NHS trusts and universities across England and Scotland. Participants: Parents/carers aged 18 and over, with an autistic child between 3 and 9 years and 11 months, sufficient spoken and written English, willing to be randomised and attend all group sessions, who agree to maintain their child's current medication up to 24 weeks and not to participate in any other trials up to 24 weeks. Intervention: An 8-week parent/carer intervention that was delivered face to face and online using a secure digital platform. Randomisation was at the child level using equal allocation ratio. Information: Research associates and research leads were blind to trial arm allocation. Main outcome measures: The primary outcome is the Clinical Global Impression - Improvement scale, based on child data. Economic outcomes included incremental cost per additional child achieving at least the target improvement in Clinical Global Impression - Improvement scale, cost consequences and incremental cost per quality-adjusted life-year gained were calculated for the comparison of the Understanding Repetitive Behaviours and Learning About Autism groups. Results: Two hundred and sixty-two participants were consented and 227 randomised to either the Learning About Autism (113 participants) or the Understanding Repetitive Behaviours (114 participants) arms of the trial. Seventy-two families did not provide data at primary end point. Data were available for 81 Learning About Autism and 74 Understanding Repetitive Behaviours families at 24 weeks. No differences were found between the arms on the Clinical Global Impression - Improvement scale. Analysis of the secondary outcomes indicated that children in the Understanding Repetitive Behaviours arm were more likely to be rated responders in target restricted and repetitive behaviours at 24 weeks. Improvement in parent and family functioning was apparent across both arms over time, with no evidence of differences between the arms. Five serious adverse events were reported, none of which were related to study participation. Conclusions: The study had a less than expected follow-up at the primary end point and was therefore underpowered. Findings related to the potential clinical effectiveness of Understanding Repetitive Behaviours remain inconclusive. Understanding Repetitive Behaviours is unlikely to be considered cost-effective at 12 months. Future work should determine what the mechanisms of change in functionally impactful restricted and repetitive behaviours are and consider longer time horizons and different methods of valuing benefits for autistic children. Trial registration: This trial is registered as ISRCTN15550611. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 16/111/95) and is published in full in Health Technology Assessment; Vol. 29, No. 48. See the NIHR Funding and Awards website for further award information.Autistic children often do the same behaviours repeatedly, have specific interests or like things to stay the same each time something happens. Often this does not cause difficulties and these behaviours and interests can be helpful and fun. However, sometimes they may cause harm to the child, put them at risk and/or restrict opportunities for learning or impact on their family life. Working with parents/carers of autistic children, we developed a parent/carer programme (Understanding Repetitive Behaviours) to help parents/carers to recognise and understand these behaviours and learn approaches to reduce their child’s use of behaviours that have a functional impact. This study aimed to find out whether our parent programme was helpful and good value for money. The 227 families who agreed to participate in the study were allocated by chance into two separate groups, either the Understanding Repetitive Behaviours group or another parent/carer group (Learning About Autism). Parents/carers provided us with lots of information about their child and themselves at the beginning of the study, and then again after 10, 24 and 52 weeks. This study took place during the COVID-19 pandemic, and we had to make changes to both the delivery of parent programmes and how the research took place to comply with government guidelines. Unfortunately, 72 families did not complete the follow-up at 24 weeks. This meant that we were unable to find out whether or not the Understanding Repetitive Behaviours intervention was effective. We therefore cannot recommend either parent group intervention to help parents know how best to respond to their autistic child’s impactful repetitive behaviours. Despite this, we were able to show that both Understanding Repetitive Behaviours and Learning About Autism can be delivered by trained NHS professionals and that both groups are safe for families. Also, some families who attended Understanding Repetitive Behaviours reported improvement in their child’s functionally impactful repetitive behaviours at 24 weeks and parents/carers in both groups reported more confidence, greater well-being and less stress up to 1 year afterwards, indicating that both parent groups were beneficial and supportive for parents of autistic children.
Author(s): Grahame V, Kernohan A, Kharati E, Mathias A, Butcher C, Dixon L, Fletcher-Watson S, Garland D, Glod M, Goodwin J, Heron S, Honey E, Le Couteur A, Mackie L, Ogundimu E, Probert H, Riby D, Rob P, Rogan L, Tavernor L, Vale L, Imogen Webb E, Weetman C, Rodgers J
Publication type: Article
Publication status: Published
Journal: Health Technology Assessment
Year: 2025
Volume: 29
Issue: 48
Print publication date: 01/08/2025
Online publication date: 09/06/2025
Acceptance date: 01/10/2023
Date deposited: 13/10/2025
ISSN (electronic): 2046-4924
Publisher: National Institute for Health and Care Research
URL: . https://doi.org/10.3310/WHTU0367
DOI: 10.3310/WHTU0367
Data Access Statement: All data requests should be submitted to the corresponding author for consideration. Access to available anonymised data may be granted following review.
PubMed id: 41014350
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