Autistic patients' experiences of the hospital setting: A scoping review

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Greenwood, E., Cooklin, A., Barbaro, J., & Miller, C. (2023). Autistic patients' experiences of the hospital setting: A scoping review. Journal of Advanced Nursing, 80(3), 908-923. https://doi.org/10.1111/jan.15880

Publication date: 24 Sep 2023 Added to AutiHub: 7 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Elly Greenwood
  2. Amanda Cooklin
  3. Josephine Barbaro *
  4. Charne Miller

Abstract

Abstract Aim To explore the factors that affect the experiences of autistic patients in the hospital setting. Design A scoping review. Data Sources A systematic literature search using the databases CINAHL, Medline and Google Scholar was undertaken in September 2021 and updated in January 2023. This review is based on the methodological framework of Arksey and O'Malley (International Journal of Social Research Methodology, 8(1):19–32, 2005), which was further refined by the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses Extension for Scoping Reviews. Results Autistic patients, as well as their families and healthcare staff, face several barriers that can impact their healthcare experiences within hospital settings. Of 211 articles screened, 30 were eligible and included. Through our review, we identified two main themes. The first theme, ‘challenges to hospital experiences’, includes four sub‐themes: (1) communication, (2) a mismatch between the needs for autistic patients and the hospital environment, (3) challenges related to parents' experiences and (4) challenges related to hospital systems. The second theme, ‘facilitators that improve hospital experiences’, includes three sub‐themes: (1) provision of care pathways, (2) partnership between parents and experts and (3) facilitators to improve hospital systems. By understanding these themes, we can work to address the barriers that autistic patients and their families face, while leveraging the facilitators to improve their hospital experiences. Conclusion It is critical to understand the experiences of autistic patients in the hospital setting because they present a substantial risk of hospital admission due to their associated acute to chronic health conditions. Additionally, nurses and other medical staff must understand the unique hospital experiences and challenges of autistic patients to improve care and facilitate better hospital experiences. This review further highlights the crucial need to adopt a collaborative and inclusive approach between autistic patients, their families and healthcare staff. To achieve this, co‐design initiatives that incorporate the perspectives and lived experiences of the autistic community are necessary. By placing autistic voices at the forefront of these initiatives, it is hoped that changes are meaningful, relevant and can be sustained. Impact Understanding the unique hospital experiences and challenges of autistic patients can improve their quality of life and well‐being by reducing stress and anxiety during hospitalization, leading to better health outcomes and potentially shorter hospital stays. It can also promote a more positive view of healthcare among autistic individuals, encouraging them to seek medical care when needed and have broader societal impacts such as reducing healthcare costs and improving the overall health and well‐being of the population. Autistic patients present a substantial risk of hospital admission due to their associated acute to chronic conditions. Nurses and other medical staff must understand the unique hospital experiences and challenges of autistic patients to improve care and facilitate better hospital experiences. Patient or Public Contribution No patient or public contribution.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

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 18:18.

Cited references
52
With a DOI
48
Without a DOI, from raw bibliography text
4
3 / 52 (5.8%) cited references include at least one author identified as autistic.
References with data to complete
2 / 52 (3.8%)
References with detected author names
50 / 52 (96.2%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
4
References with raw author names still to review
2
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
278
From DOI or external metadata
278
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
79 / 278 (28.4%) names are linked to an author already present in AutiHub. 199 / 278 (71.6%) names are not yet linked.
Names linked to a person identified as autistic
8 / 278 (2.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 8 / 79 (10.1%). Distinct people identified as autistic: 8 / 232 (3.4%).
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