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Social Participation and its Classification for Preschool Children with Autism Spectrum Disorder

  • Author / Creator
    Germani, Tamara H
  • Background. Social participation is considered the ultimate aim of rehabilitation, particularly for preschool children with Autism Spectrum Disorder (ASD). Given the inherent social difficulties of preschool children with ASD, social participation is a relevant and meaningful construct to explore and target as part of a multidisciplinary team. However, the construct of social participation has not yet been refined for preschool children with ASD by stakeholders to ensure its measurement is meaningful and relevant. There are also no available measures exclusively focused on social participation for preschool children with ASD, which may be imperative to the inclusion of these children in community activities with peers. Objectives. To (i) complete a scoping review on participation measures available for preschool children with ASD, (ii) understand stakeholders’ perspectives, including parents, professionals and educators, on social participation for preschool children with ASD, and (iii) develop and establish content validity for a social participation classification system. Methods. The International Classification of Functioning, Disability and Health – Child and Youth (ICF-CY) version, was selected to support the theoretical framework of this thesis. First, a scoping review was completed using a broad and comprehensive search strategy across several electronic databases with hand searching of reference lists. Second, a mixed methods web-based survey of stakeholders, including parents and professionals, was developed to support the refinement of social participation using frequency and content analysis. Third, a multiple methods study used a modified nominal group technique and experts developed the Autism Social Participation Classification System (ASPCS) using the refined construct of social participation from the web-based survey. The Delphi model of consensus was then used to generate agreement on content validity of levels over three rounds of a web-based survey by stakeholders from across Canada. Results. Seven measures of participation were identified in the scoping review for possible use with preschool children. Five measures had standardization samples that included preschool children with ASD and three provided both validity and reliability data. For the mixed methods study, responses of 74 stakeholders demonstrated that the essential components of social participation were: (i) behaviour management, (ii) social interactions and (iii) various types of play. Additional analysis revealed that stakeholders used intrinsic motivation strategies and contingency management to facilitate social participation. In the multiple methods study, an expert group of clinicians and a parent developed the ASPCS over five focus groups and 12 follow-up interviews. Content validity was established with >80% consensus that each of the five levels in three domains, Behaviour, Social Desire and Activities & Environment, in the ASPCS were clinically meaningful and distinct. Conclusions. There were few standardized participation measures for preschool children with ASD and none were exclusively focused on social participation. A new measure was needed. With the refinement of social participation by stakeholders, and using the taxonomy of the ICF-CY, the ASPCS was developed and validated for preschool children with ASD. Evaluation of additional psychometric properties and investigation into its clinical application are needed.

  • Subjects / Keywords
  • Graduation date
    2016-06:Fall 2016
  • Type of Item
    Thesis
  • Degree
    Doctor of Philosophy
  • DOI
    https://doi.org/10.7939/R37659P6K
  • License
    This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.
  • Language
    English
  • Institution
    University of Alberta
  • Degree level
    Doctoral
  • Department
    • Medical Sciences-Paediatrics
  • Supervisor / co-supervisor and their department(s)
    • Magill-Evans, Joyce (Occupational Therapy)
    • Zwaigenbaum, Lonnie (Medical Sciences - Paediatrics)
  • Examining committee members and their departments
    • Little, Lauren (Occupational Therapy Education Department)
    • Phelan, Shannon (Occupational Therapy)
    • Hodgetts, Sandra (Occupational Therapy)
    • Ball, Geoff (Medical Sciences - Paediatrics)