Lookup NU author(s): Emerita Professor Helen McConachie,
Professor Ann Le Couteur,
Professor Jeremy Parr
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2017 The Author(s) 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.
Author(s): McConachie H, Livingstone N, Morris C, Beresford B, Le Couteur A, Gringras P, Garland D, Jones G, Macdonald G, Williams K, Parr JR
Publication type: Article
Publication status: Published
Journal: Journal of Autism and Developmental Disorders
Print publication date: 01/04/2018
Online publication date: 31/08/2017
Acceptance date: 02/04/2016
ISSN (print): 0162-3257
ISSN (electronic): 1573-3432
Publisher: Springer New York LLC
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