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

Helen McConachie*, Nuala Livingstone, Christopher Morris, Bryony Beresford, Ann Le Couteur, Paul Gringras, Deborah Garland, Glenys Jones, Geraldine Macdonald, Katrina Williams, Jeremy R. Parr

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

20 Citations (Scopus)
284 Downloads (Pure)

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.

Original languageEnglish
Number of pages11
JournalJournal of Autism and Developmental Disorders
Early online date31 Aug 2017
DOIs
Publication statusE-pub ahead of print - 31 Aug 2017

Keywords

  • Consultation
  • Measurement
  • Outcomes
  • Parents
  • Young children

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