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. 2018 Apr;48(4):1041-1051.
doi: 10.1007/s10803-017-3282-2.

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

Helen McConachie  1 , Nuala Livingstone  2   3 , Christopher Morris  4 , Bryony Beresford  5 , Ann Le Couteur  6 , Paul Gringras  7 , Deborah Garland  8 , Glenys Jones  9 , Geraldine Macdonald  2   10 , Katrina Williams  11 , Jeremy R Parr  12
Affiliations

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

Helen McConachie et al. J Autism Dev Disord. 2018 Apr.

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.

Keywords: Consultation; Measurement; Outcomes; Parents; Young children.

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Conflict of interest statement

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

This article does not contain any studies with human participants performed by any of the authors. All individuals involved in giving advice and expertise acted as consultants, therefore formal consent was not required.

Figures

Fig. 1
Fig. 1
Search results of qualitative literature on outcomes valued by parents of children with ASD
See this image and copyright information in PMC

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