Understanding and improving the care pathway for children with autism

Lisa Hurt (Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK)
Kate Langley (School of Psychology, Cardiff University, Cardiff, UK)
Kate North (Department of Humanities, Cardiff Metropolitan University, Cardiff, UK)
Alex Southern (Faculty of Education and Communities, University of Wales Trinity Saint David – Swansea Campus, Cardiff, UK)
Lauren Copeland (School of Medicine, Cardiff University, Cardiff, UK)
Jonathan Gillard (School of Mathematics, Cardiff University, Cardiff, UK)
Sharon Williams (College of Human and Health Sciences, Swansea University, Swansea, UK)

International Journal of Health Care Quality Assurance

ISSN: 0952-6862

Publication date: 11 February 2019

Abstract

Purpose

The purpose of this paper is to describe current care pathways for children with autism including enablers and barriers, as experienced by health professionals, education professionals and families in South Wales, UK.

Design/methodology/approach

This study is based on a mixed-methods approach using focus group discussions, creative writing workshops and visualisation using rich pictures.

Findings

The experiences of the care pathways differed significantly across the three groups. Health professionals described the most rigidly structured pathways, with clear entry points and outcomes. Education professionals and parents described more complex and confusing pathways, with parents assuming the responsibility of coordinating the health and education activity in a bid to link the two independent pathways. All three groups identified enablers, although these differed across the groups. The barriers were more consistent across the groups (e.g. poor communication, missing information, lack of transparency, limited post-diagnosis services and access to services based on diagnosis rather than need).

Practical implications

This research could inform the design of new services which are premised on multi-agency and multi-disciplinary working to ensure children with Autism spectrum disorders (ASD) receive joined up services and support.

Originality/value

Although this study did not represent all professional groups or all experiences of autism, the authors examined three different perspectives of the ASD pathway. In addition, the authors triangulated high-level process maps with rich pictures and creative writing exercises, which allowed the authors to identify specific recommendations to improve integration and reduce duplication and gaps in provision.

Keywords

Citation

Hurt, L., Langley, K., North, K., Southern, A., Copeland, L., Gillard, J. and Williams, S. (2019), "Understanding and improving the care pathway for children with autism", International Journal of Health Care Quality Assurance, Vol. 32 No. 1, pp. 208-223. https://doi.org/10.1108/IJHCQA-08-2017-0153

Download as .RIS

Publisher

:

Emerald Publishing Limited

Copyright © 2019, Emerald Publishing Limited

Please note you might not have access to this content

You may be able to access this content by login via Shibboleth, Open Athens or with your Emerald account.
If you would like to contact us about accessing this content, click the button and fill out the form.
To rent this content from Deepdyve, please click the button.