Identifying Components of Autism Friendly Health Care: An Exploratory Study Using a Modified Delphi Method

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O’Hagan, B., Krauss, S., Friedman, A., Bartolotti, L., Abubakare, O., Broder‐Fingert, S., & Augustyn, M. (2022). Identifying Components of Autism Friendly Health Care: An Exploratory Study Using a Modified Delphi Method. Journal of Developmental & Behavioral Pediatrics, 44(1), e12-e18. https://doi.org/10.1097/dbp.0000000000001139

Journal or book title
Journal of Developmental & Behavioral Pediatrics
Publisher
Ovid Technologies (Wolters Kluwer Health)
Volume
44
Issue
1
Pages
e12-e18
Publication date: 11 Nov 2022 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
7
Publication authors identified as autistic
1 / 7 (14.3%)
  1. Belinda O’Hagan
  2. Shari Krauss
  3. Alexander Friedman
  4. Lauren Bartolotti
  1. Oluwatobi Abubakare *
  2. Sarabeth Broder‐Fingert
  3. Marilyn Augustyn

Abstract

OBJECTIVES: Autistic individuals report lower health care satisfaction. However, there is currently no set of "best practice" standards about caring for autistic individuals. In this exploratory study, we aim to identify features of Autism Friendly practice according to a sample consisting of mainly professionals whose interests include autism using a modified 3-round Delphi-a method that identifies a consensus view across subject participants. METHODS: Statements about components of an Autism Friendly health care practice were compiled in consultation with the steering committee of an Autism Friendly Initiative at a single, urban academic safety-net hospital. Participants were recruited through our national network of professionals and patients/families mailing list. Examples of invited professionals included researchers, health care workers, and educators. In the first 2 rounds, we distributed electronic surveys to participants, who scored statements from 1 to 9 regarding importance. In round 2, statements that were scored low by all stakeholder groups were eliminated. Seventy-eight participants responded to the first-round survey, and 51 participants responded to the second-round survey. In the third round, 38 participants ranked 16 statements from most to least important. Statements are summarized and presented in the Results section. RESULTS: Topics that emerged from highly ranked statements include environmental/operational modifications (e.g., longer appointment times) and staff training to support autistic patients. CONCLUSION: Highly ranked statements represented previously reported barriers, including the need for staff training and inclusive engagement with the autistic community. The findings can help inform health care organizations to determine priorities when building an Autism Friendly health care practice.

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: 2 Oct 2026 13:57.

Cited references
25
With a DOI
25
Without a DOI, from raw bibliography text
0
1 / 25 (4.0%) cited references include at least one author identified as autistic.
References with data to complete
0 / 25 (0.0%)
References with detected author names
25 / 25 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
References with raw author names still to review
0
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
149
From DOI or external metadata
149
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
25 / 149 (16.8%) names are linked to an author already present in AutiHub. 124 / 149 (83.2%) names are not yet linked.
Names linked to a person identified as autistic
6 / 149 (4.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 6 / 25 (24.0%). Distinct people identified as autistic: 6 / 133 (4.5%).
  1. Esmé G Trevelyan , Prof Nicola Robinson (2015). Delphi methodology in health research: how to do it? European Journal of Integrative Medicine, 7(4), 423-428. Elsevier BV.
    Type: Article DOI: 10.1016/j.eujim.2015.07.002 OpenAlex: https://openalex.org/W792928115
    Crossref OpenAlex OpenCitations
  2. Rini Vohra , Suresh Madhavan , Usha Sambamoorthi (2017). Comorbidity prevalence, healthcare utilization, and expenditures of Medicaid enrolled adults with autism spectrum disorders . Autism, 21(8), 995-1009. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316665222 OpenAlex: https://openalex.org/W2536166251
    Crossref OpenAlex OpenCitations
  3. Soraia da Silva Lopes , Mariana Rabello Laignier , Cândida Caniçali Primo , Franciéle Marabotti C. Leite (2013). Baby-Friendly Hospital Initiative: evaluation of the Ten Steps to Successful Breastfeeding . Revista Paulista de Pediatria, 31(4), 488-493. FapUNIFESP (SciELO).
    Type: Article DOI: 10.1590/s0103-05822013000400011 OpenAlex: https://openalex.org/W2171777631
    Crossref OpenAlex OpenCitations
  4. Helen Tager‐Flusberg , CONNIE KASARI (2013). Minimally Verbal School‐Aged Children with Autism Spectrum Disorder: The Neglected End of the Spectrum . Autism Research, 6(6), 468-478. Wiley.
    Type: Article DOI: 10.1002/aur.1329 OpenAlex: https://openalex.org/W1909988460
    Crossref OpenAlex OpenCitations
  5. Janet R. Cummings , Frances L. Lynch , Kristal C. Rust , Karen J. Coleman , Jeanne M. Madden , Ashli A. Owen-Smith et al. (2016). Health Services Utilization Among Children With and Without Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 46(3), 910-920. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2634-z OpenAlex: https://openalex.org/W2095948752
    Crossref OpenAlex OpenCitations
  6. Anna R. Gagliardi , Michael Fung Kee Fung , Bernard Langer , Hartley Stern , Adalsteinn D. Brown (2005). Development of ovarian cancer surgery quality indicators using a modified Delphi approach . Gynecologic Oncology, 97(2), 446-456. Elsevier BV.
    Type: Article DOI: 10.1016/j.ygyno.2004.12.059 OpenAlex: https://openalex.org/W1976446230
    Crossref OpenAlex OpenCitations
  7. Meghan N. Davignon , Eron Friedlaender , Peter F. Cronholm , Breah Paciotti , Susan E. Levy (2014). Parent and Provider Perspectives on Procedural Care for Children with Autism Spectrum Disorders . Journal of Developmental & Behavioral Pediatrics, 35(3), 207-215. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000000036 OpenAlex: https://openalex.org/W2322901653
    Crossref OpenAlex OpenCitations
  8. Cara Harwell , Emily Bradley (2019). Caring for Children with Autism in the Emergency Department . Pediatric Annals, 48(8), 333. SLACK, Inc..
    Type: Article DOI: 10.3928/19382359-20190725-01 OpenAlex: https://openalex.org/W2969783912
    Crossref OpenAlex OpenCitations
  9. Elizabeth A Holey , Jennifer L Feeley , John Dixon , Vicki J Whittaker (2007). An exploration of the use of simple statistics to measure consensus and stability in Delphi studies . BMC Medical Research Methodology, 7(1), 52. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1471-2288-7-52 OpenAlex: https://openalex.org/W1997755128
    Crossref OpenAlex OpenCitations
  10. Barbara Muskat , Priscilla Burnham Riosa , David Nicholas , Wendy Roberts , Kevin P. Stoddart , Lonnie Zwaigenbaum (2015). Autism comes to the hospital: The experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals . Autism, 19(4), 482-490. SAGE Publications.
    Type: Article DOI: 10.1177/1362361314531341 OpenAlex: https://openalex.org/W2144388425
    Crossref OpenAlex OpenCitations
  11. Rini Vohra , Suresh Madhavan , Usha Sambamoorthi , Claire St Peter (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions . Autism, 18(7), 815-826. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313512902 OpenAlex: https://openalex.org/W2168230540
    Crossref OpenAlex OpenCitations
  12. Mary Beth Bruder , Gerard Kerins , Cynthia Mazzarella , Jessica Sims , Neil Stein (2012). Brief Report: The Medical Care of Adults with Autism Spectrum Disorders: Identifying the Needs . Journal of Autism and Developmental Disorders, 42(11), 2498-2504. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-012-1496-x OpenAlex: https://openalex.org/W2032407690
    Crossref OpenAlex OpenCitations
  13. Jonathan I. Bisson , Behrooz Tavakoly , Anke B. Witteveen , Dean Ajdukovic , Louis Jehel , Venke J. Johansen et al. (2010). TENTS guidelines: development of post-disaster psychosocial care guidelines through a Delphi process . British Journal of Psychiatry, 196(1), 69-74. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.bp.109.066266 OpenAlex: https://openalex.org/W2118589815
    Crossref OpenAlex OpenCitations
  14. Karen Balakas , Carol S. Gallaher , Carra Tilley (2015). Optimizing Perioperative Care for Children and Adolescents with Challenging Behaviors . MCN: The American Journal of Maternal/Child Nursing, 40(3), 153-159. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/nmc.0000000000000124 OpenAlex: https://openalex.org/W2036887938
    Crossref OpenAlex OpenCitations
  16. Nathan J. Blum , Heidi M. Feldman , William J. Barbaresi , David J. Schonfeld , Robin L. Hansen , Christopher B. Forrest (2012). Research Priorities for Developmental-Behavioral Pediatrics . Journal of Developmental & Behavioral Pediatrics, 33(6), 509-516. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0b013e31825a7101 OpenAlex: https://openalex.org/W2074009244
    Crossref OpenAlex OpenCitations
  17. Lonnie Zwaigenbaum , David Nicholas , Barbara Muskat , Christopher Kilmer , Amanda S. Newton , William R. Craig et al. (2016). Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 46(5), 1725-1736. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2703-y OpenAlex: https://openalex.org/W2297344897
    Crossref OpenAlex OpenCitations
  18. James G. MacKenzie , Gathi Abraham , Shannon M. Goebel (2013). Management of Pediatric Patients With Autistic Spectrum Disorders in the Emergency Department . Clinical Pediatric Emergency Medicine, 14(1), 56-59. Elsevier BV.
    Type: Article DOI: 10.1016/j.cpem.2013.01.010 OpenAlex: https://openalex.org/W2074370733
    Crossref OpenAlex OpenCitations
  19. Sarabeth Broder‐Fingert , Christine F. Ferrone , Ann Giauque , Susan L. Connors (2014). Residents’ Knowledge and Comfort With Caring for Children With Autism Spectrum Disorder . Clinical Pediatrics, 53(14), 1390-1392. SAGE Publications.
    Type: Article DOI: 10.1177/0009922814526982 OpenAlex: https://openalex.org/W2103448692
    Crossref OpenAlex OpenCitations
  20. Nina Scarpinato , Jana Bradley , Kay Kurbjun , Xenia Bateman , Brenda Holtzer , Beth Ely (2010). Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting . Journal for Specialists in Pediatric Nursing, 15(3), 244-254. Wiley.
    Type: Article DOI: 10.1111/j.1744-6155.2010.00244.x OpenAlex: https://openalex.org/W2082692856
    Crossref OpenAlex OpenCitations
  21. Inyang A. Isong , Sowmya R. Rao , Chloe Holifield , Dorothea Iannuzzi , Ellen Hanson , Janice Ware et al. (2014). Addressing Dental Fear in Children With Autism Spectrum Disorders . Clinical Pediatrics, 53(3), 230-237. SAGE Publications.
    Type: Article DOI: 10.1177/0009922813517169 OpenAlex: https://openalex.org/W2154649064
    Crossref OpenAlex OpenCitations
  22. Frederick P. Rivara , Robert Tennyson , Brianna Mills , Samuel R. Browd , Carolyn A. Emery , Gerald Gioia et al. (2020). Consensus Statement on Sports-Related Concussions in Youth Sports Using a Modified Delphi Approach . JAMA Pediatrics, 174(1), 79. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2019.4006 OpenAlex: https://openalex.org/W2984337649
    Crossref OpenAlex OpenCitations
  23. Susan E. Levy , Rosemary Frasso , Stephanie Colantonio , Hayley Reed , Gail Stein , Frances K. Barg et al. (2016). Shared Decision Making and Treatment Decisions for Young Children With Autism Spectrum Disorder . Academic Pediatrics, 16(6), 571-578. Elsevier BV.
    Type: Article DOI: 10.1016/j.acap.2016.04.007 OpenAlex: https://openalex.org/W2345196789
    Crossref OpenAlex OpenCitations
  24. Paul S. Carbone (2013). Moving From Research to Practice in the Primary Care of Children With Autism Spectrum Disorders . Academic Pediatrics, 13(5), 390-399. Elsevier BV.
    Type: Article DOI: 10.1016/j.acap.2013.04.003 OpenAlex: https://openalex.org/W2158283463
    Crossref OpenAlex OpenCitations
  25. David Nicholas , Lonnie Zwaigenbaum , Barbara Muskat , William R. Craig , Amanda S. Newton , Christopher Kilmer et al. (2016). Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder . Social Work in Health Care, 55(6), 409-426. Informa UK Limited.
    Type: Article DOI: 10.1080/00981389.2016.1178679 OpenAlex: https://openalex.org/W2426882334
    Crossref OpenAlex OpenCitations