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Int J Health Care Qual Assur. 2019 Feb 11;32(1):208-223. doi: 10.1108/IJHCQA-08-2017-0153.

Understanding and improving the care pathway for children with autism.

Author information

1
Division of Population Medicine, School of Medicine, Cardiff University , Cardiff, UK.
2
School of Psychology, Cardiff University , Cardiff, UK.
3
Department of Humanities, Cardiff Metropolitan University , Cardiff, UK.
4
Faculty of Education and Communities, University of Wales Trinity Saint David - Swansea Campus , Cardiff, UK.
5
School of Medicine, Cardiff University , Cardiff, UK.
6
School of Mathematics, Cardiff University , Cardiff, UK.
7
College of Human and Health Sciences, Swansea University , Swansea, UK.

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:

Autism; Care pathways; Education; Healthcare; Improvement; Quality improvement

PMID:
30859873
DOI:
10.1108/IJHCQA-08-2017-0153
[Indexed for MEDLINE]

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