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Effects of Parent- and Therapist-Delivered Intervention for Toddlers with Autism On Parent Stress and Sense of Competence: A Multi-Site, Randomized Trial

Friday, 3 May 2013: 14:00-18:00
Banquet Hall (Kursaal Centre)
A. M. Estes1, L. A. Vismara2, A. L. Fitzpatrick3, J. Winter4, J. G. Greenson4, M. L. Rocha5, G. Dawson6, C. Lord7 and S. J. Rogers8, (1)Speech and Hearing Sciences, University of Washington, Seattle, WA, (2)University of California at Davis MIND Institute, Sacramento, CA, (3)Epidemiology, University of Washington, Seattle, WA, (4)University of Washington, Seattle, WA, (5)UC Davis MIND Institute, Sacramento, CA, (6)Autism Speaks, UNC Chapel Hill, Chapel Hill, NC, (7)Center for Autism and the Developing Brain, Weill Cornell Medical College, White Plains, NY, (8)Psychiatry and Behavioral Sciences, MIND Institute; University of California at Davis, Sacramento, CA
Background: Early intervention, begun before age 2, has demonstrated efficacy in improving outcomes for children with ASD (Dawson et al., 2010).  However, the impact of early autism intervention on caregivers is not yet well understood. Previous research has consistently demonstrated that parents of children with ASD have increased stress levels, but innovations in autism intervention are needed to address this issue and help parents maintain and increase their psychological well-being, even after an ASD diagnosis. 

Objectives: This study is designed to examine the impact of an intervention based on the Early Start Denver Model (ESDM) on parenting-related stress and parent sense of competence.  We hypothesize that parents in the ESDM group will demonstrate increased sense of competence and decreased parenting-related stress compared with parents who receive community intervention as usual (Community). 

Methods:  Ninety seven parents of children with ASD from three different communities in the United States participated in a randomized, controlled trial of the ESDM.  Children were diagnosed and began the study at 12-24 months of age. In phase 1, the ESDM group received three months of parent coaching. In phase 2, the ESDM group received 2 years of intensive, in-home, therapist- and parent-delivered intervention.  The Community group obtained intervention from community providers over these same time periods.  Parents in both groups were assessed for parenting-related stress and sense of competence through self-report questionnaires at the same four, longitudinal time points.

Results: During phase 1, the parents whose children received ESDM reported no increase in parenting-related stress, whereas parents in the Community group experienced increased parenting-related stress.  Parental sense of competence did not differ between groups during phase 1.  As required by our Data Safety and Monitoring Board, data for phase 2 will be analyzed by an independent data coordinating center after all participants have completed phase 2 of the study (December, 2012). At that time, we will examine whether parents in the ESDM group 1) maintain lower stress levels and 2) experience an enhanced sense of competence after Year 1 and Year 2 of intensive, in-home, therapist-delivered intervention.  We will use General Estimating Equations to evaluate the associations of group assignment on parenting stress and sense of competence at one- and two-years of follow up of the study adjusting for potential confounders as needed.

Conclusions:  Phase 1 results suggest that a parent-coaching intervention designed for parents to implement with their young children may help maintain parental adjustment after a child is newly diagnosed with ASD and while parents are learning a new intervention.  Future analyses will determine whether, in phase 2, parents in the ESDM group maintain or decrease stress levels and demonstrate an increased sense of competence, compared with the Community group. The goal is to provide a manualized, naturalistic, approach to intervention for very young children that also supports parental adjustment to the increased demands of early autism intervention.

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