Caring for Adults With Autism Spectrum Disorder in the Emergency Department: Lessons Learned From Pediatric Emergency Colleagues

Brasher, Susan; Middour-Oxler, Brandi; Chambers, Rebecca; Calamaro, Christina J.

doi:10.1016/j.jen.2020.12.013

Cited by 3 publications

(11 citation statements)

References 20 publications

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“…[39,40] Most interventions were focused on a general hospital setting (n=4), whilst others were for specific environments such as emergency departments (EDs) (n=2). [36,41] Most sources reported on a single HP tool (n=8); others were part of a wider toolkit [41] or intervention. [40] Five sources discussed or evaluated tools which sought to improve communication.…”

Section: Study Design Methodological Quality Populations and Settingsmentioning

confidence: 99%

“…[40] Five sources discussed or evaluated tools which sought to improve communication. [26,36,[40][41][42] These included the testing and retesting of a particular intervention [26] or piloting an intervention and seeking stakeholder feedback. [42] Four sources did not report a research study, and were descriptive in nature, including commentaries and blog posts.…”

Section: Study Design Methodological Quality Populations and Settingsmentioning

confidence: 99%

“…[22,42] Four sources noted that the HP was an aspect of a wider intervention, including projects focused on: transition from paediatrics to adult primary care services, [40] improving quality of care [26,38] or as part of a healthcare toolkit. [22] There was variation in the depth of HP descriptions, with some sources containing detailed information, including visual representations of the tool itself, [40,41] whereas others only mentioned a few elements within the HP. [45] Table 5 compares the HPs contents against the elements identified by Northway et al [8] in their review of HPs for people with learning disabilities.…”

Section: Interventionsmentioning

confidence: 99%

“…The most frequently included elements in HPs were levels of communication (n=7), name (n=5) and date of birth (n=5). We interpreted "maintaining comfort" as attempts to reduce distress, for example: "ways to help me avoid distress", [41] and "accommodations to help patient stay calm and comfortable". [22] Some HP elements described by Northway et al [8] were not included in any of the tools, including: advanced care planning (do not resuscitate orders), next of kin, contacts in relation to discharge, requirements for an interpreter, how I communicate when I feel well or unwell, the person completing the form, oral hygiene needs, risk assessments, reasonable adjustments required, best interests meeting and/or decision, sleeping, behaviour or support with toileting.…”

Section: Interventionsmentioning

confidence: 99%

“…Across the included sources, the most frequently described explicit Mechanisms included: improving knowledge for both patients and clinicians (n=4), strengthening care and person-centred practices (n=4), and embedding the tool within systems (n=3). Other potential Mechanisms were poorly described and under theorised, for example, expecting that a HP would "increase quality of care", [41] "reduce anxiety for families" [44] or "improve communication" [38] without providing further details as to how this would be achieved. Our analysis of the sources resulted in a range of implicit Mechanisms being generated by the research team including: increasing accessibility (n=2), humanising the Autistic patient (n=2) and ensuring the tool is embedded within the system (n=1).…”

Section: Mechanismsmentioning

confidence: 99%

See 4 more Smart Citations

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

Williams

Brown

et al. 2022

Preprint

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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 Context, Mechanisms and Outcomes (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. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes 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 Mechanisms, and thus cannot affect Outcomes.

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Section: Study Design Methodological Quality Populations and Settingsmentioning

confidence: 99%

Section: Study Design Methodological Quality Populations and Settingsmentioning

confidence: 99%

Section: Interventionsmentioning

confidence: 99%

Section: Interventionsmentioning

confidence: 99%

Section: Mechanismsmentioning

confidence: 99%

See 3 more Smart Citations

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

Williams

Brown

et al. 2022

Preprint

View full text Add to dashboard Cite

show abstract

Changing Behaviors: The Behavior Change Wheel and Emergency Nursing

Castner¹

2021

Journal of Emergency Nursing

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A realist review of health passports for Autistic adults

Ellis,

Williams,

Brown

et al. 2023

PLoS ONE

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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 Context, Mechanisms and Outcomes (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. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes 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 in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes.

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Caring for Adults With Autism Spectrum Disorder in the Emergency Department: Lessons Learned From Pediatric Emergency Colleagues

Cited by 3 publications

References 20 publications

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

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

Changing Behaviors: The Behavior Change Wheel and Emergency Nursing

A realist review of health passports for Autistic adults

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