A hostile context, very limited intervention theory and almost no change in outcomes: findings from a systematic realist review of health passports for Autistic adults
Ellis, R., Williams, K., Brown, A., Healer, E., & Grant, A. (2022). A hostile context, very limited intervention theory and almost no change in outcomes: findings from a systematic realist review of health passports for Autistic adults [Preprint]. openRxiv. https://doi.org/10.1101/2022.12.04.22283076
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Abstract
Abstract Background Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. Methods We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the C ontext, M echanisms and O utcomes ( CMOs ) associated with each AHP tool. Findings 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. I nterventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. M echanisms were often not stated or were inferred by the reviewers and lacked specificity. O utcomes were included in four studies and were primarily focused on AHP uptake, rather than O utcomes which measured impact. Conclusion There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone, without the inclusion of the local Autistic community developing the tool, and a wider intervention, such as training for staff or the use of local champions, may mean that AHPs do not trigger any M echanisms, and thus cannot affect O utcomes.
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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.
-
M. Nguyen , Nicholas Lennox , R. Ware (2014). Hand‐held health records for individuals with intellectual disability: a systematic review . Journal of Intellectual Disability Research, 58(12), 1172-1178. Wiley.Crossref OpenAlex OpenCitations
-
Pia Bradshaw , Elizabeth Pellicano , Mieke van Driel , Anna Urbanowicz (2019). How Can We Support the Healthcare Needs of Autistic Adults Without Intellectual Disability? Current Developmental Disorders Reports, 6(2), 45-56. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Muneef Alshammari , Owen Doody , Ita Richardson (2020). Health Information Systems for Clients with Mild Intellectual and Developmental Disability: A Framework . Proceedings of the 13th International Joint Conference on Biomedical Engineering Systems and Technologies, 125-132. SCITEPRESS - Science and Technology Publications.Crossref OpenAlex OpenCitations
-
Sonia Michelle Dalkin , Joanne Greenhalgh , Diana Jones , Bill Cunningham , Monique Lhussier (2015). What’s in a mechanism? Development of a key concept in realist evaluation . Implementation Science, 10(1), 49-49. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Lauren Bishop-Fitzpatrick , Amy J. H. Kind (2017). A Scoping Review of Health Disparities in Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(11), 3380-3391. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Ruth Northway , Stacey Rees , Michelle Davies , Sharon Williams (2017). Hospital passports, patient safety and person‐centred care: A review of documents currently used for people with intellectual disabilities in the UK . Journal of Clinical Nursing, 26(23-24), 5160-5168. Wiley.Crossref OpenAlex OpenCitations
-
Paul Linsley , David Howard , Sara Owen (2015). The construction of context-mechanisms-outcomes in realistic evaluation . Nurse Researcher, 22(3), 28-34. RCN Publishing Ltd..Crossref OpenAlex OpenCitations
-
Eilidh Cage , Jessica Di Monaco , Victoria Newell (2019). Understanding, attitudes and dehumanisation towards autistic people . Autism, 23(6), 1373-1383. SAGE Publications.Crossref OpenAlex
-
E. De Weger , N. J. E. Van Vooren , Geoff Wong , S. Dalkin , B. Marchal , H. W. Drewes et al. (2020). What’s in a Realist Configuration? Deciding Which Causal Configurations to Use, How, and Why . International Journal of Qualitative Methods, 19. SAGE Publications.Crossref OpenAlex OpenCitations
-
Kirsten Corden , Rebecca Brewer , Eilidh Cage (2022). A Systematic Review of Healthcare Professionals’ Knowledge, Self-Efficacy and Attitudes Towards Working with Autistic People . Review Journal of Autism and Developmental Disorders, 9(3), 386-399. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Catherine H Bell , Sally Muggleton , Deborah L Davis (2022). Birth plans: A systematic, integrative review into their purpose, process, and impact . Midwifery, 111, 103388. Elsevier BV.Crossref OpenAlex OpenCitations
-
Elizabeth Pellicano , Adam Dinsmore , Tony Charman (2014). Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study . PLoS ONE, 9(10), e109946. Public Library of Science (PLoS).
-
David Mason , Barry Ingham , Anna Urbanowicz , Cos Michael , Heather Birtles , Marc Woodbury‐Smith et al. (2019). A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults . Journal of Autism and Developmental Disorders, 49(8), 3387-3400. Springer Science and Business Media LLC.
-
Pia Bradshaw , Claire Pickett , Mieke L van Driel , Katie Brooker , Anna Urbanowicz (2021). Recognising, supporting and understanding Autistic adults in general practice settings . Australian Journal of General Practice, 50(3), 126-130. The Royal Australian College of General Practitioners.Crossref OpenAlex OpenCitations
-
G. F. Moore , S. Audrey , M. Barker , L. Bond , C. Bonell , W. Hardeman et al. (2015). Process evaluation of complex interventions: Medical Research Council guidance . BMJ, 350(mar19 6), h1258-h1258. BMJ.Crossref OpenAlex OpenCitations
-
Yona Lunsky (2018). Hospital passports require standardisation to improve patient safety and person-centred care for those with intellectual disability . Evidence Based Nursing, 21(2), 56-56. BMJ.Crossref OpenAlex OpenCitations
-
Ray Pawson , Trisha Greenhalgh , Gill Harvey , Kieran Walshe (2005). Realist review - a new method of systematic review designed for complex policy interventions . Journal of Health Services Research & Policy, 10(1_suppl), 21-34. SAGE Publications.Crossref OpenAlex OpenCitations
-
Michelle Lum , Michelle Garnett , Erin O’Connor (2014). Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder . Research in Autism Spectrum Disorders, 8(12), 1713-1721. Elsevier BV.Crossref OpenCitations
-
Jim Blair (2013). Everybody’s life has worth – Getting it right in hospital for people with an intellectual disability and reducing clinical risks . Clinical Risk, 19(3), 58-63. SAGE Publications.Crossref OpenAlex OpenCitations
-
Richard A Sharpe , Whitney Curry , Rachel Brown , Rohit Shankar (2019). A public health approach to reducing health inequalities among adults with autism . British Journal of General Practice, 69(688), 534-535. Royal College of General Practitioners.Crossref OpenAlex OpenCitations
-
Rory Sheehan , Aarti Gandesha , Angela Hassiotis , Pamela Gallagher , Matthew Burnell , Glyn Jones et al. (2016). An audit of the quality of inpatient care for adults with learning disability in the UK . BMJ Open, 6(4), e010480. BMJ.Crossref OpenAlex OpenCitations
-
(2019). Learning disabilities: making reasonable adjustments in hospital . Nursing Times, 115, 38.Type: OtherCrossref
-
Mojgan Mirghafourvand , Sakineh Mohammad Alizadeh Charandabi , Solmaz Ghanbari‐Homayi , Leila Jahangiry , Jila Nahaee , Tahereh Hadian (2019). Effect of birth plans on childbirth experience: A systematic review . International Journal of Nursing Practice, 25(4), e12722-e12722. Wiley.Crossref OpenAlex OpenCitations
-
Christina Nicolaidis , Dora M Raymaker *Autistic author. Learn more… , Katherine McDonald , Steven K. Kapp *Autistic author. Learn more… , Michael Weiner , Elesia Ashkenazy *Autistic author. Learn more… et al. (2016). The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers . Journal of General Internal Medicine, 31(10), 1180-1189. Springer Science and Business Media LLC.
-
-
Geoff Wong , Gill Westhorp , Ana Manzano , Joanne Greenhalgh , Justin Jagosh , Trisha Greenhalgh (2016). RAMESES II reporting standards for realist evaluations . BMC Medicine, 14(1), 96. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Freda McCormick , Lynne Marsh , Laurence Taggart , Michael Brown (2021). Experiences of adults with intellectual disabilities accessing acute hospital services: A systematic review of the international evidence . Health & Social Care in the Community, 29(5), 1222-1232. Wiley.Crossref OpenAlex OpenCitations
-
Sebastian Lemire , Alexander Kwako , Steffen B. Nielsen , Christina A. Christie , Stewart I. Donaldson , Frans L. Leeuw (2020). What Is This Thing Called a Mechanism? Findings From a Review of Realist Evaluations . New Directions for Evaluation, 2020(167), 73-86. Wiley.Crossref OpenAlex OpenCitations
-
Mary Dixon-Woods , Graham P Martin (2016). Does quality improvement improve quality? Future Hospital Journal, 3(3), 191-194. Elsevier BV.Crossref OpenAlex OpenCitations
-
Nazish Hashmi , Conor Davidson (2021). Reasonable adjustments for autistic adults . BJPsych Open, 7(S1), S81-S81. Royal College of Psychiatrists.Crossref OpenAlex OpenCitations
-
Séverine Lalive d’Epinay Raemy , Adeline Paignon (2019). Providing equity of care for patients with intellectual and developmental disabilities in Western Switzerland: a descriptive intervention in a University Hospital . International Journal for Equity in Health, 18(1), 46-46. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Layla Haidrani (2017). About Me (autism passport) . Nursing Standard, 31(21), 32-32. RCN Publishing Ltd..Crossref OpenAlex OpenCitations
-
Janet Diffin , Bronagh Byrne , Helen Kerr , Jayne Price , Aine Abbott , Dorry McLaughlin et al. (2019). The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: A realist review of the literature . Child: Care, Health and Development, 45(3), 313-332. Wiley.Crossref OpenAlex OpenCitations
-
Jonathan Greenberg , Olga Prushinskaya , Joshua D. Harris , Gillian Guidetti-Myers , Jacqueline Steiding , Gregory S. Sawicki et al. (2018). Utilization of a patient-centered asthma passport tool in a subspecialty clinic . Journal of Asthma, 55(2), 180-187. Informa UK Limited.Crossref OpenAlex OpenCitations
-
(n.d.). DHSC. Autism capabilities framework. 2019. Available at: https://skillsforhealth.org.uk/wp-content/uploads/2020/11/Autism-Capabilities-Framework-Oct-2019.pdf [Accessed: 24 August 2022].Type: OtherCrossref
-
Marji Erickson Warfield , Morgan K. Crossman , Ann Martha Neumeyer , Julie O’Brien , Karen A. Kuhlthau (2017). Transition tools and access to adult primary care . Advances in Autism, 3(3), 131-141. Emerald.Crossref OpenAlex OpenCitations
-
(n.d.). DHSC and DfE. 2021. The national strategy for autistic children, young people and adults: 2021 to 2026. Available at: https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026/the-national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026 [Accessed: 24 August 2022].Type: OtherCrossref
-
Sreedharan Geetha Sajith , Yafen Teo , Candice Sarah Ling (2018). Development and Introduction of “Communication Passport” in an Adult Inpatient Psychiatric Unit for Persons With Intellectual Disabilities: A Brief Report from Singapore . Journal of Policy and Practice in Intellectual Disabilities, 15(2), 166-170. Wiley.Crossref OpenAlex OpenCitations
-
(n.d.). Welsh Government. 2021. Code of Practice on the Delivery of Autism Services: Supporting Guidance Document, pp: 1–82. Available at: https://gov.wales/sites/default/files/publications/2021-07/code-of-practice-on-the-delivery-of-autism-services-supporting-guidance-document_0.pdfType: OtherCrossref
-
(n.d.). NICE. 2012. Autism spectrum disorder in adults: diagnosis and management Clinical guideline. http://www.nice.org.uk/guidance/cg142 [Accessed 4. 2. 22]Type: OtherCrossref
-
Lorelli S. Nowell , Jill M. Norris , Deborah E. White , Nancy J. Moules (2017). Thematic Analysis . International Journal of Qualitative Methods, 16(1). SAGE Publications.Crossref OpenAlex OpenCitations
-
(n.d.). Public Health Wales. 2022. Health Profile: Guidance Notes for Health Professionals. https://phw.nhs.wales/services-and-teams/improvement-cymru/our-work/learning-disability-health-improvement-programme/health-profile/health-profile-for-professionals/guidance-notes-for-health-professionals/ [Accessed: 25/08/2022]Type: OtherCrossref
-
Marina Heifetz , Yona Lunsky (2018). Implementation and evaluation of health passport communication tools in emergency departments . Research in Developmental Disabilities, 72, 23-32. Elsevier BV.Crossref OpenAlex OpenCitations
-
(n.d.). National Autism Society. 2020. [Online] My health passport. https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport [Accessed on: 18/10/2022]Type: OtherCrossref
-
Sophie Sarre , Jill Maben , Clare Aldus , Justine Schneider , Heather Wharrad , Caroline Nicholson et al. (2018). The challenges of training, support and assessment of healthcare support workers: A qualitative study of experiences in three English acute hospitals . International Journal of Nursing Studies, 79, 145-153. Elsevier BV.Crossref OpenAlex OpenCitations
-
(n.d.). AsIAm. 2022 [Online].[cited 2022, Oct 4]. https://asiam.ie/Type: OtherCrossref
-
(n.d.). United States Congress. 1990. Americans with Disabilities Act of 1990. 42 U. S. C § 12101.Type: OtherCrossref
-
Kathryn Skivington , Lynsay Matthews , Sharon Anne Simpson , Peter Craig , Janis Baird , Jane M Blazeby et al. (2021). A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance . BMJ, 374, n2061. BMJ.Crossref OpenAlex OpenCitations
-
Elizabeth Young , Ramanan Aiyadurai , Thivia Jegathesan , Catherine Brown , Nicole Bechard , Ripudaman S. Minhas et al. (2019). Increasing Access to Developmental Services for Children with Autism Spectrum Disorder: The Pediatric Developmental Passport Pilot Randomized Trial . Journal of Autism and Developmental Disorders, 49(12), 4867-4876. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Christina Nicolaidis , Dora M Raymaker *Autistic author. Learn more… , Steven K. Kapp *Autistic author. Learn more… , Amelia E.V. Baggs , Elesia Ashkenazy *Autistic author. Learn more… , Katherine McDonald et al. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants . Autism, 23(8), 2007-2019. SAGE Publications.
-
(n.d.). Peninsula Health. 2017. The Emergency Department Nurse and Mum making a trip to hospital less stressful for kids with autism. https://www.peninsulahealth.org.au/2017/09/28/emergency-department-nurse-mum-making-trip-hospital-less-stressful-kids-autism/ [Accessed 14. 7. 22]Type: OtherCrossref
-
Jill F Harris , Leigh P Gorman , Aditi Doshi , Shannon Swope , Shayleigh D Page (2021). Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home . Autism, 25(3), 753-766. SAGE Publications.Crossref OpenAlex OpenCitations
-
Marlene Martelize Kelbrick , Jane Radley , Syeda Shaherbano , Leanne Cook , Andrew Simmons (2015). Autism spectrum disorders: physical health care in a low secure forensic setting . Mental Health Practice, 18(9), 31-37. RCN Publishing Ltd..Crossref OpenAlex
-
(n.d.). Westminster Autism Commission. 2016. A spectrum of obstacles: An inquiry into access to healthcare for autistic people. London: Westminster Autism Commission. Available at: https://westminsterautismcommission.files.wordpress.com/2016/03/ar1011_ncg-autism-report-july-2016.pdf [Accessed: 25 August 2022]Type: OtherCrossref
-
Alice Turnock , Kate Langley , Catherine R.G. Jones (2022). Understanding Stigma in Autism: A Narrative Review and Theoretical Model . Autism in Adulthood, 4(1), 76-91. SAGE Publications.Crossref OpenAlex OpenCitations
-
Matthew J Page , David Moher , Patrick M Bossuyt , Isabelle Boutron , Tammy C Hoffmann , Cynthia D Mulrow et al. (2021). The PRISMA 2020 statement: an updated guideline for reporting systematic reviews . BMJ, 372, n71. BMJ.Crossref OpenAlex
-
Clare-Marie Anderson , Rosie Monardo , Reni Soon , Jennifer Lum , Mary Tschann , Bliss Kaneshiro (2017). Patient Communication, Satisfaction, and Trust Before and After Use of a Standardized Birth Plan. Hawai’i Journal of Medicine & Public Health, 76(11), 305.Type: Article OpenAlex: https://openalex.org/W2980688545Crossref OpenAlex
-
Sabine Stamm-Balderjahn , Rebecca Faliniski , Susanne Rossek , Karla Spyra (2019). Development and evaluation of a patient passport to promote self-management in patients with heart diseases . BMC Health Services Research, 19(1), 716-716. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
(n.d.). Grant, Unpublished.Type: OtherCrossref
-
Joanne Greenhalgh , Ana Manzano (2022). Understanding ‘context’ in realist evaluation and synthesis . International Journal of Social Research Methodology, 25(5), 583-595. Informa UK Limited.Crossref OpenAlex OpenCitations
-
(n.d.). Perkins, E., & Vanzant, S. 2019. Promoting Better Healthcare Appointments: Let’s Make the Unfamiliar Familiar. EP Magazine. Ep-magazine.com. 50–51.Type: OtherCrossref
-
Learning Disability Practice (2014). Hospital passports may improve outcomes for patients with autism . Learning Disability Practice, 17(7), 6-6. RCN Publishing Ltd..Crossref OpenAlex OpenCitations
-
Susan Brasher , Brandi Middour-Oxler , Rebecca Chambers , Christina Calamaro (2021). Caring for Adults With Autism Spectrum Disorder in the Emergency Department: Lessons Learned From Pediatric Emergency Colleagues . Journal of Emergency Nursing, 47(3), 384-389. Elsevier BV.Crossref OpenAlex OpenCitations
-
(n.d.). Unitt, I. 2018. The time has not yet come to stop talking about hospital passports.[Internet] Nursing Times. Available: https://www.nursingtimes.net/students/the-time-has-not-yet-come-to-stop-talking-about-hospital-passports-24-12-2018/ [Accessed: 04/10/2022]Type: OtherCrossref
-
(n.d.). National Development Team for Inclusion. 2020. “It’s Not Rocket Science”. https://www.ndti.org.uk/resources/publication/its-not-rocket-science [Accessed: 04/10/2022]Type: OtherCrossref
-
(n.d.). Autistic Doctors International (ADI). 2022.[Online] https://autisticdoctorsinternational.com/ [Accessed on: 20/10/2022]Type: OtherCrossref
-
(n.d.). Maternity Autism Research Group (MARG). 2022.[Online] https://www.maternityautismresearchgroup.co.uk/ [Accessed on: 20/10/2022]Type: OtherCrossref