Making visible the lived experience of Autistic children and their parents attending emergency departments in Australia: A Qualitative study

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Greenwood, E., Miller, C., Barbaro, J., Date, P., Dyson, A., & Cooklin, A. (2026). Making visible the lived experience of Autistic children and their parents attending emergency departments in Australia: A Qualitative study. International Emergency Nursing, 86, 101811. https://doi.org/10.1016/j.ienj.2026.101811

Publication date: 4 Apr 2026 Added to AutiHub: 7 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Elly Greenwood
  2. Charne Miller
  3. Josephine Barbaro *
  1. Perrin Date
  2. Alexander Dyson
  3. Amanda Cooklin

Abstract

• Parents have a pivotal role during ED presentations however, their voices remain underrepresented in research. • Parents reported anticipatory anxiety, institutional barriers, and repeated traumatic encounters, often compounded by stigma and inadequate support structures. • Identifies five themes shaped by systemic and relational healthcare factors using Bronfenbrenner’s model. • Early support and embedding family centred care is recommended to reduce trauma. • Stresses that findings are interrelated and require collective implementation. Background: Autistic children present frequently to emergency departments (ED) but often encounter distressing and exclusionary environments. Parents play a pivotal role during these encounters, yet their voices remain underrepresented in research. Aim: To explore the lived experiences of parents with Autistic children attending the emergency departments in Australia. Methods: A hermeneutic phenomenological approach guided the study. Fourteen parents of Autistic children (under 18 years) participated in semi-structured interviews, analysed thematically using Bronfenbrenner’s Bioecological Model. Findings: Five key themes were identified across ecological systems: (1) parents as experts and navigators of care; (2) parental and child interactions with health staff; (3) systems that undermine safety; (4) stigma and disclosure about perceptions of autism; and (5) time, trauma, and long-term effects. Parents reported anticipatory anxiety, institutional barriers, and repeated traumatic encounters, often compounded by stigma and inadequate support structures. Conclusion: Autistic children and families face substantial challenges in ED, highlighting the urgent need for trauma informed, autism specific, and family centered practices, guided by a holistic ecological framework to drive system wide change.

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 07:09.

Cited references
45
With a DOI
32
Without a DOI, from raw bibliography text
13
2 / 45 (4.4%) cited references include at least one author identified as autistic.
References with data to complete
4 / 45 (8.9%)
References with detected author names
41 / 45 (91.1%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
13
References with raw author names still to review
4
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
157
From DOI or external metadata
157
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
7
45 / 157 (28.7%) names are linked to an author already present in AutiHub. 112 / 157 (71.3%) names are not yet linked.
Names linked to a person identified as autistic
2 / 157 (1.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 2 / 45 (4.4%). Distinct people identified as autistic: 1 / 155 (0.6%).
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