A Systematic Review of Interventions to Improve Healthcare Experiences and Access in Autism

Walsh, Chloe; O’Connor, Paul; Walsh, Ellen; Lydon, Sinéad

doi:10.1007/s40489-021-00279-2

Cited by 22 publications

(20 citation statements)

References 117 publications

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“…In the first category of recommendations focusing on primary HCPs, the identified recommendations mainly concentrated on education of primary HCPs. In previous literature, mainly online educational interventions to increase HCPs' knowledge of autism have been suggested as well (Nicolaidis et al, 2015;Walsh et al, 2021). The results from our study add that it should also be considered to complement educational courses with input from a diverse group of autistic people with lived experience illustrating healthcare barriers they face.…”

Section: Discussionmentioning

confidence: 67%

“…Since providing (access to) appropriate healthcare is a main task of general practitioners (GPs), reducing barriers in primary healthcare for autistic people is key (Mazurek et al, 2020). Despite this need to improve healthcare for the autistic population, there is a lack of recommendations that are useful for improvement of primary healthcare, and are also based on both the needs of primary healthcare providers (HCPs) and autistic people (Gilmore et al, 2022;Walsh et al, 2021).…”

Section: Introductionmentioning

confidence: 99%

“…To improve communication of autistic individuals on their needs in healthcare, for example The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Healthcare toolkit (Nicolaidis et al, 2016) and different versions of an 'Autism passport' have been developed (e.g., British versions from Autism Anglia and the National Autistic Society, and a Dutch version (Agterberg S. and Spectrumvisie, 2018)). Furthermore, Walsh et al (2021) All in all, because of the increased morbidity-and mortality-risk for autistic people, and the experienced healthcare-barriers, improving primary healthcare for the autistic population should be considered a necessity (Raymaker et al, 2017;Walsh et al, 2021). However, recommendations to reduce these barriers and improve primary healthcare for autistic people, based on both the needs of primary HCPs and the autistic population, are limited.…”

Section: Introductionmentioning

confidence: 99%

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Recommendations to improve primary healthcare for people with autism: a Delphi-study

Warreman¹,

Ester²,

Geurts³

et al. 2022

Preprint

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Autistic people often experience health problems and a range of healthcare barriers. Therefore, the aim of this study was to evaluate barriers and identify recommendations to improve primary healthcare for autistic people.Semi-structured interviews with 11 adults ((parents of) autistic people and healthcare providers (HCPs)) were performed to evaluate barriers in Dutch healthcare. Next, in the Delphi-study, a panel of 21 autistic adults and 20 primary HCPs rated barriers in primary healthcare and assessed recommendations based on usefulness and feasibility.In the thematically analysed interviews, 20 barriers in Dutch healthcare for autistic people were identified. In the Delphi-study, primary HCPs rated the negative impact of most barriers relatively lower than the autistic participants. The Delphi-study resulted in 22 recommendations to improve primary healthcare for autistic people: focused on primary HCPs (i.e., education with input from autistic people), on autistic people (i.e., improvement of preparation for GP-appointments), and on organization of general practice (i.e., improvement of continuity in care).Primary HCPs seem to assess healthcare barriers as less impactful than autistic adults. With use of the Delphi-method, useful and feasible recommendations to improve primary healthcare for autistic people were identified, based on the needs of autistic adults and primary HCPs.

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Section: Discussionmentioning

confidence: 67%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Recommendations to improve primary healthcare for people with autism: a Delphi-study

Warreman¹,

Ester²,

Geurts³

et al. 2022

Preprint

View full text Add to dashboard Cite

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“…Some tools have been developed to assess barriers to healthcare access experienced by autistic adults from their own perspective 71 or from their caregiver’s or healthcare provider’s perspective 77 . The person-related, provider-related and system-related barriers identified using these tools should facilitate future research that seeks to improve the care and health of autistic people 71 , 78 . However, research designed in collaboration with autistic people is needed to assess the most effective ways of improving their healthcare experiences 56 , 67 , 78 .…”

Section: A Capabilities Approach To Autistic Livesmentioning

confidence: 99%

“…The person-related, provider-related and system-related barriers identified using these tools should facilitate future research that seeks to improve the care and health of autistic people 71 , 78 . However, research designed in collaboration with autistic people is needed to assess the most effective ways of improving their healthcare experiences 56 , 67 , 78 .…”

Section: A Capabilities Approach To Autistic Livesmentioning

confidence: 99%

A capabilities approach to understanding and supporting autistic adulthood

et al. 2022

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There is little comprehensive research into autistic adulthood, and even less into the services and supports that are most likely to foster flourishing adult autistic lives. This limited research is partly because autism is largely conceived as a condition of childhood, but this focus of research has also resulted from the orthodox scientific approach to autism, which conceptualizes autistic experience almost entirely as a series of biologically derived functional deficits. Approaching autism in this way severely limits what is known about this neurodevelopmental difference, how research is conducted and the services and supports available. In this Review, we adopt an alternative research strategy: we apply Martha Nussbaum’s capabilities approach, which focuses on ten core elements of a thriving human life, to research on autistic adulthood. In doing so, we identify areas where autistic adults thrive and where they often struggle, and highlight issues to which researchers, clinicians and policymakers should respond. The resulting picture is far more complex than conventional accounts of autism imply. It also reveals the importance of engaging autistic adults directly in the research process to make progress towards genuinely knowing autism and supporting flourishing autistic lives.

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In Support of Addressing Sensory Differences to Improve Preventive Dental Care Among Autistic Children

2023

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One of the core and distinguishing features of autism is differences in sensory processing and modulation. 1 Differences in the ability to process and integrate auditory, tactile, olfactory, visual, proprioceptive, and vestibular input affect the participation in daily routines and activities of autistic individuals, including seeking and receiving medical care. Routine medical care most often involves input in all sensory systems, making it challenging for individuals with sensory processing, integration, and modulation differences to tolerate needed medical interventions. For example, individuals may be sensitive to noise, lights, and tactile input common to medical settings and procedures. Among clinical procedures, improving participation in dental care is especially important for children with autism because poor oral health is more common and receipt of oral care more challenging than for neurotypical peers.In terms of the mechanism for these differences, the medical community theorizes that increased activation of the sympathetic nervous system and decreased parasympathetic functions may contribute to sensory hyperreactivity for autistic children. Targeting increased input to specific sensory systems may activate the parasympathetic nervous system, which is thought to regulate sensory reactivity and undergirds sensory-integration therapies. 2 Addressing sensory integration and processing differences and disorders, key to improving care for autistic children, involves determining the sensory profile, integration abilities, and modulation skills of an individual in multiple contexts and guiding modifications to environments and tasks to better match the individual's needs. 3 These insights have prompted the development of approaches to address the sensory differences that are common among children with autism. For example, guidance exists for making medical settings more accommodating for autistic children and some hospitals have implemented autism-friendly initiatives that include modifying the sensory environment. 4 Without these approaches to address sensory needs, children may forego or fail to tolerate needed medical services, including basic preventive medical and dental care. This is particularly important because autistic youths have much higher frequency of health care visits compared with neurotypical youths. 5 Despite the importance of addressing the sensory needs of autistic children, few high-quality intervention studies have been conducted to evaluate the effectiveness of sensory modifications to health care environments in improving the experience for these children. A 2021 review identified 30 papers that evaluated interventions to improve health care access or care experiences for people with autism; of these, none were randomized clinical trials. 6 These results underscore the dearth of high-quality randomized trials investigating interventions to meet the needs, including the sensory needs, of autistic individuals who represent nearly 3% of US children.The study by Stein Duker et ...

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A Systematic Review of Interventions to Improve Healthcare Experiences and Access in Autism

Cited by 22 publications

References 117 publications

Recommendations to improve primary healthcare for people with autism: a Delphi-study

Recommendations to improve primary healthcare for people with autism: a Delphi-study

A capabilities approach to understanding and supporting autistic adulthood

In Support of Addressing Sensory Differences to Improve Preventive Dental Care Among Autistic Children

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