Managing Repetitive Behaviours in Young Children with Autism Spectrum Disorder (ASD): Pilot Randomised Controlled Trial of a New Parent Group Intervention

Abstract Background Restricted and repetitive behaviours vary greatly across the autism spectrum, and although not all are problematic some can cause distress and interfere with learning and social opportunities. We have, alongside parents, developed a parent group based intervention for families of young children with autism, which aims to offer support to parents and carers; helping them to recognise, understand and learn how to respond to their child’s challenging restricted repetitive behaviours. Methods The study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Managing Repetitive Behaviours (MRB) parent group intervention versus a psychoeducation parent group Learning About Autism (LAA) (n = 250; 125 intervention/125 psychoeducation; ~ 83/site) for parents of young children aged 3–9 years 11 months with a diagnosis of autism. All analyses will be done under intention-to-treat principle. The primary outcome at 24 weeks will use generalised estimating equation (GEE) to compare proportion of children with improved RRB between the MRB group and the LAA group. The GEE model will account for the clustering of children by parent groups using exchangeable working correlation. All secondary outcomes will be analysed in a similar way using appropriate distribution and link function. The economic evaluation will be conducted from the perspective of both NHS costs and family access to local community services. A ‘within trial’ cost-effectiveness analysis with results reported as the incremental cost per additional child achieving at least the target improvement in CGI-I scale at 24 weeks. Discussion This is an efficacy trial to investigate the clinical and cost-effectiveness of a parent group based intervention designed to help parents understand and manage their child’s challenging RRB. If found to be effective, this intervention has the potential to improve the well-being of children and their families, reduce parental stress, greatly enhance community participation and potential for learning, and improve longer-term outcomes. Trial registration Trial ID: ISRCTN15550611 Date registered: 07/08/2018. Sponsor and Monitor: Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust R&D Manager Lyndsey Dixon, Address: St Nicholas Hospital, Jubliee Road, Gosforth, Newcastle upon Tyne NE3 3XT, [email protected], Tel: 0191 246 7222

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New parent group intervention to Manage Repetitive Behaviours in young children with autism spectrum disorder (ASD)

http://isrctn.org/> ◽

10.1186/isrctn88687420 ◽

2012 ◽

Author(s):

Victoria Grahame

Keyword(s):

Autism Spectrum Disorder ◽

Young Children ◽

Group Intervention ◽

Children With Autism ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Repetitive Behaviours ◽

Parent Group ◽

Young Children With Autism

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A Clinical and Cost Effectiveness Trial of A Parent Group Intervention To Manage Challenging Restricted and Repetitive Behaviours In Young Children With Autism Spectrum Disorder: Study Protocol For a Randomized Controlled Trial.

10.21203/rs.3.rs-73454/v1 ◽

2021 ◽

Author(s):

Victoria Grahame ◽

Linda Dixon ◽

Sue Fletcher-Watson ◽

Deborah Garland ◽

Magdalena Glod ◽

...

Keyword(s):

Cost Effectiveness ◽

Young Children ◽

Group Intervention ◽

Controlled Trial ◽

Children With Autism ◽

Autism Spectrum ◽

Repetitive Behaviours ◽

Parent Group ◽

Young Children With Autism ◽

Restricted And Repetitive Behaviours

Abstract Background: Restricted and repetitive behaviours vary greatly across the autism spectrum, and although not all are problematic some can cause distress and interfere with learning and social opportunities. We have, alongside parents, developed a parent group based intervention for families of young children with autism, which aims to offer support to parents and carers; helping them to recognise, understand and learn how to respond to their child’s challenging restricted repetitive behaviours.Methods: The study is a clinical and cost effectiveness, multi-site randomised controlled trial of the Managing Repetitive Behaviours (MRB) parent group intervention versus a psychoeducation parent group Learning about Autism (LAA) (n=250; 125 intervention/125 psychoeducation; ~83/site) for parents of young children aged 3-9 years 11 months with a diagnosis of autism. All analyses will be done under intention-to-treat principle. The primary outcome at 24 weeks will use Generalised Estimating Equation (GEE) to compare proportion of children with improved RRB between the MRB group and the LAA group. The GEE model will account for the clustering of children by parent groups using exchangeable working correlation. All secondary outcomes will be analysed in a similar way using appropriate distribution and link function.The economic evaluation will be conducted from the perspective of both NHS costs, and family access to local community services. A ‘within trial’ cost-effectiveness analysis with results reported as the incremental cost per additional child achieving at least the target improvement in CGI-I scale at 24 weeks.DiscussionThis is an efficacy trial to investigate the clinical and cost effectiveness of a parent group based intervention designed to help parents understand and manage their child’s challenging RRB. If found to be effective this intervention has the potential to improve the well-being of children and their families, reduce parental stress, greatly enhance community participation and potential for learning, and improve longer-term outcomes.Trial Registration: Trial ID: ISRCTN15550611 Date registered: 07/08/2018URL: https://doi.org/10.1186/ISRCTN15550611

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Paediatric Autism Communication Therapy-Generalised (PACT-G) against treatment as usual for reducing symptom severity in young children with autism spectrum disorder: study protocol for a randomised controlled trial

Trials ◽

10.1186/s13063-018-2881-3 ◽

2018 ◽

Vol 19 (1) ◽

Cited By ~ 9

Author(s):

Jonathan Green ◽

◽

Catherine Aldred ◽

Tony Charman ◽

Ann Le Couteur ◽

...

Keyword(s):

Autism Spectrum Disorder ◽

Randomised Controlled Trial ◽

Young Children ◽

Symptom Severity ◽

Controlled Trial ◽

Children With Autism ◽

Autism Spectrum ◽

Treatment As Usual ◽

Young Children With Autism ◽

Randomised Controlled

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Parent perceptions of participation in a parent-mediated communication-focussed intervention with their young child with autism spectrum disorder

Autism ◽

10.1177/1362361320936394 ◽

2020 ◽

Vol 24 (8) ◽

pp. 2129-2141

Author(s):

Kathy Leadbitter ◽

Wendy Macdonald ◽

Carol Taylor ◽

Karen Leneh Buckle ◽

Keyword(s):

Autism Spectrum Disorder ◽

Young Children ◽

Controlled Trial ◽

Children With Autism ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Family Quality Of Life ◽

Parent Child Communication ◽

Young Children With Autism ◽

Parent Child

Paediatric Autism Communication Therapy is a parent-mediated, video-aided, communication-focussed intervention for young children with autism spectrum disorder. It has been shown in a UK randomised controlled trial to lead to improvements in parent–child communication and family quality of life, together with a sustained reduction in child autism symptom severity. This qualitative study examined parental perceptions of their participation in Paediatric Autism Communication Therapy within the context of the randomised controlled trial. Semi-structured interviews were carried out with 18 parents within 12 months of completion of the therapy. The thematic analysis provides insights into parents’ hopes, expectations, and learning processes when working with Paediatric Autism Communication Therapy therapists and carrying out daily practice in the home. Parents reported positive changes in their interaction and relationship with their child and improvements to their child’s communication and interaction. Some also highlighted poignant realisations and emotional challenges associated with taking part in this post-diagnostic therapy. Practical difficulties were also emphasised. Implications for the clinical practice of parent-mediated interventions with young children with autism spectrum disorder are discussed. Lay abstract Paediatric Autism Communication Therapy is an intervention for young children with autism spectrum disorder that focuses on parent–child communication. In Paediatric Autism Communication Therapy, the therapist and parent watch videos of the parent and child playing together. The therapist coaches the parent to carefully observe the child’s communication and to interact with their child in a more sensitive and responsive way. Parents are encouraged to use the strategies with their child at home. Paediatric Autism Communication Therapy has been shown to lead to long-term improvements in parent–child communication and family quality of life. This study aimed to explore parents’ perceptions of their participation in Paediatric Autism Communication Therapy. Interviews were carried out by an independent researcher with 18 parents. Parents discussed the learning processes they went through when working with Paediatric Autism Communication Therapy therapists and carrying out home practice. Some parents described initial doubts about the approach and hesitations about being videoed and analysing video material. In time, most parents came to really value the therapy and their relationship with the therapist. They reported positive changes in their interaction and relationship with their child and improvements to their child’s communication and interaction. Some also highlighted poignant realisations and emotional challenges associated with taking part in this post-diagnosis therapy. Practical difficulties were also emphasised, including the time commitment, accessibility of therapy venues and difficulties in occupying the child during therapist–parent discussion. Implications for the clinical practice of parent-mediated interventions are discussed.

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