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    Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder

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    Author
    McConachie, H; Livingstone, N; Morris, C; Beresford, B; Le Couteur, A; Gringras, P; Garland, D; Jones, G; Macdonald, G; Williams, K; ...
    Date
    2018-04-01
    Source Title
    Journal of Autism and Developmental Disorders
    Publisher
    SPRINGER/PLENUM PUBLISHERS
    University of Melbourne Author/s
    Williams, Katrina
    Affiliation
    Paediatrics (RCH)
    Metadata
    Show full item record
    Document Type
    Journal Article
    Citations
    McConachie, H., Livingstone, N., Morris, C., Beresford, B., Le Couteur, A., Gringras, P., Garland, D., Jones, G., Macdonald, G., Williams, K. & Parr, J. R. (2018). Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder. JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS, 48 (4), pp.1041-1051. https://doi.org/10.1007/s10803-017-3282-2.
    Access Status
    Open Access
    URI
    http://hdl.handle.net/11343/256993
    DOI
    10.1007/s10803-017-3282-2
    Abstract
    Evaluation of interventions for children with autism spectrum disorder (ASD) is hampered by the multitude of outcomes measured and tools used. Measurement in research with young children tends to focus on core impairments in ASD. We conducted a systematic review of qualitative studies of what matters to parents. Parent advisory groups completed structured activities to explore their perceptions of the relative importance of a wide range of outcome constructs. Their highest ranked outcomes impacted directly on everyday life and functioning (anxiety, distress, hypersensitivity, sleep problems, happiness, relationships with brothers and sisters, and parent stress). Collaboration between professionals, researchers and parents/carers is required to determine an agreed core set of outcomes to use across evaluation research.

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