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Can the Pegasus Psychoeducation Programme Improve the Understanding, Well-Being and Functioning of Young People with an Autism Spectrum Disorder and That of Their Families? A Randomized Controlled Trial

Friday, 3 May 2013: 09:00-13:00
Banquet Hall (Kursaal Centre)
R. K. Gordon1, L. Roughan2, V. Livermore-Hardy3, O. Baykaner4, D. H. Skuse5, M. Murin6 and W. Mandy7, (1)Behavioural and Brain Sciences, Great Ormond Street Hospital and UCL Institute of Child Health, London, United Kingdom, (2)Great Ormond Street Hospital, london, United Kingdom, (3)4th Floor, Frontage Building, Great Ormond Street Hospital, London, United Kingdom, (4)Social Communication Disorders Clinic, Great Ormond Street Hospital for Children, London, United Kingdom, (5)Behavioural and Brain Sciences Unit, UCL Institute of Child Health, London, United Kingdom, (6)National Centre for High Functioning Autism, Department of Child & Adolescent Mental Health (DCAMH), Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom, (7)Division of Psychology and Language Sciences, Faculty of Brain Sciences, UCL, London, United Kingdom
Background: Despite the increased focus on early recognition and diagnosis of ASDs, very little is known about how to best help children integrate their “label” in a positive way. There is anecdotal evidence that person-centred psychoeducation and self-management training after diagnosis can enable people to develop helpful perceptions of their psychiatric condition, and can alleviate feelings of isolation and stigmatisation (Chowdhury, 2003; Proudfoot, et al, 2009). However, currently there are no evidence-based guidelines on how to communicate the diagnosis of ASD to children or their parents. Neither are there any psychoeducational packages available for this purpose.

Objectives: The study aims to evaluate the efficacy of PEGASUS, a new group psychoeducational programme designed for children with ASD and their parents. PEGASUS uses principals of self-management and cognitive behavioural therapy (CBT). The programme comprises 6 weekly sessions, each lasting 1.5 hours with separate parallel sessions for children and for parents. It aims to enable children to acquire a balanced understanding of their unique strengths and difficulties and to enhance self-management strategies tailored to the child’s individual needs.

Methods: In total, 48 children (9-14 years) with diagnoses of High Functioning Autism or Asperger’s Syndrome and their parents will be recruited. Half will be randomised to attend the PEGASUS groups and half to the control group, in which they are offered no input over and above “treatment as usual”. In total, five PEGASUS groups each including 4-6 children will be run. Primary outcomes are of ASD knowledge and ASD-related self-awareness assessed using a questionnaire specially developed for this study. This is measured in both children and their parents. Children also complete the Rosenberg Self-Esteem Scale, a self-concept scale and the Strengths and Difficulties Questionnaire (SDQ). Parents complete the SDQ, the Social Responsiveness Scale, the Parental Stress Index, a measure of parental self-efficacy and a measure of utility of ASD diagnosis. Data is collected at 3 time points: baseline, after 3 months (i.e. immediately post-treatment) and at 6-month follow-up, by researchers who are blind to group allocation. The Vineland Adaptive Behaviour Scale is administered at baseline and at 6-month follow-up.

Results: So far, data at baseline and Time 2 are available for 28 children and their parents (14 PEGASUS and 14 controls). Preliminary analysis suggest that parents’ ASD knowledge and attitude composite scores show a significant increase following PEGASUS when children’s IQ is controlled for (F=4.89 (df 1,25), p=0.36). Another promising trend is the large effect of PEGASUS on children’s knowledge of their own ASD-related strengths when IQ is controlled, though this finding is not significant (partial eta squared=0.141, p=0.053). Partial eta squared of, 0.01, 0.06 and 0.14 are regarded as small, medium and large effect sizes, respectively.

Conclusions: This is the first study to evaluate the efficacy of a psycho-educational programme for children with ASD. The programme appears to be effective in increasing children’s and parents’ knowledge of ASD as well as enhancing children’s positive perceptions of themselves and parents’ perceptions about the diagnostic label.

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