Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities

Raymaker, Dora; McDonald, Katherine; Ashkenazy, Elesia; Gerrity, Martha S.; Baggs, Amelia E.V.; Kripke, Clarissa; Hourston, Sarah; Nicolaidis, Christina

doi:10.1177/1362361316661261

Cited by 165 publications

(212 citation statements)

References 26 publications

Supporting

Mentioning

199

Contrasting

Unclassified

Order By: Relevance

“…Preliminary psychometric testing of our adapted instruments is very promising, with good internal consistency reliability, test-retest reliability, content validity, structural validity, convergent validity, and responsiveness to change. 17,[20][21][22][23][24][25]33 While participatory research with autistic adults was rare to nonexistent when we first started AASPIRE, 31,32 we are very excited by the rapid increase in the use of participatory methods with autistic adults. Several other research teams have worked with autistic adults to create, adapt, or augment survey instruments.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Nicolaidis

Raymaker

McDonald

et al. 2020

Autism in Adulthood

Self Cite

View full text Add to dashboard Cite

Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants.

show abstract

Section: Discussionmentioning

confidence: 99%

“…Data on the psychometric properties of our adapted scales are available elsewhere. 17,[20][21][22][23][24][25]33 Overall, the adapted and new scales demonstrated promising psychometric characteristics, although further research needs to confirm their validity in other samples.…”

Section: Processes For Survey Adaptation or Creationmentioning

confidence: 90%

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Nicolaidis

Raymaker

McDonald

et al. 2020

Autism in Adulthood

Self Cite

View full text Add to dashboard Cite

show abstract

“…10 Autistic adults also reported a greater overall number of barriers to healthcare and numerous autism-specific barriers to care. 11 In our prior qualitative study, autistic patients and their supporters described both positive and problematic healthcare interactions, illuminating a complex interplay between an individual's autistic characteristics, the healthcare provider's knowledge and attitudes about autism, and the healthcare system. 12 For example, autistic patients described healthcare providers making incorrect assumptions about their abilities and needs, being unwilling to accommodate written communication, or using inaccessible language.…”

Section: Clinialtrialsgov Identifier: Nct01579669mentioning

confidence: 99%

“…We assessed 16 barriers to healthcare using a checklist that we had previously developed 11 for use with autistic individuals. The supporter version of the survey included a few slightly modified items to differentiate between barriers faced by the autistic individuals and those faced by the supporters.…”

Section: Toolkit Evaluationmentioning

confidence: 99%

“…The content of the toolkit was informed by a prior series of AASPIRE studies, including 1) a survey comparing the healthcare experiences 10 and barriers to care 11 of 209 autistic and 228 non-autistic adults, 2) a qualitative study of the healthcare experiences of 39 autistic adults and 16 supporters, 12 and 3) a brief survey about the autism-related practices and training needs of 129 PCPs for adults, and qualitative interviews with 9 PCPs about their experiences in providing care to autistic adults (unpublished data). These data helped us identify potential leverage points that could be targeted with our intervention and informed the types of tools and resources to include.…”

Section: Toolkit Content Developmentmentioning

confidence: 99%

See 1 more Smart Citation

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers

et al. 2016

Self Cite

View full text Add to dashboard Cite

BACKGROUND:The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum. OBJECTIVE: Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults. DESIGN: Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/postintervention comparison. PARTICIPANTS: A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States. INTERVENTIONS:The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare-and autism-related information, worksheets, checklists, and resources for patients and healthcare providers. MAIN MEASURES: Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions. KEY RESULTS: Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %). CONCLUSIONS: The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.KEY WORDS: autism; adults; community-based participatory research; primary care; healthcare interactions.

show abstract

Autism Spectrum Disorder

Hirota

King

2023

JAMA

276

View full text Add to dashboard Cite

ImportanceAutism spectrum disorder (ASD), characterized by deficits in social communication and the presence of restricted, repetitive behaviors or interests, is a neurodevelopmental disorder affecting approximately 2.3% children aged 8 years in the US and approximately 2.2% of adults. This review summarizes evidence on the diagnosis and treatment of ASD.ObservationsThe estimated prevalence of ASD has been increasing in the US, from 1.1% in 2008 to 2.3% in 2018, which is likely associated with changes in diagnostic criteria, improved performance of screening and diagnostic tools, and increased public awareness. No biomarkers specific to the diagnosis of ASD have been identified. Common early signs and symptoms of ASD in a child’s first 2 years of life include no response to name when called, no or limited use of gestures in communication, and lack of imaginative play. The criterion standard for the diagnosis of ASD is a comprehensive evaluation with a multidisciplinary team of clinicians and is based on semistructured direct observation of the child’s behavior and semistructured caregiver interview focused on the individual’s development and behaviors using standardized measures, such as the Autism Diagnostic Observation Schedule-Second Edition and the Autism Diagnostic Interview. These diagnostic measures have sensitivity of 91% and 80% and specificity of 76% and 72%, respectively. Compared with people without ASD, individuals with ASD have higher rates of depression (20% vs 7%), anxiety (11% vs 5%), sleep difficulties (13% vs 5%), and epilepsy (21% with co-occurring intellectual disability vs 0.8%). Intensive behavioral interventions, such as the Early Start Denver Model, are beneficial in children 5 years or younger for improvement in language, play, and social communication (small to medium effect size based on standardized mean difference). Pharmacotherapy is indicated for co-occurring psychiatric conditions, such as emotion dysregulation or attention-deficit/hyperactivity disorder. Risperidone and aripiprazole can improve irritability and aggression (standardized mean difference of 1.1, consistent with a large effect size) compared with placebo. Psychostimulants are effective for attention-deficit/hyperactivity disorder (standardized mean difference of 0.6, consistent with a moderate effect size) compared with placebo. These medications are associated with adverse effects including, most commonly, changes in appetite, weight, and sleep.Conclusions and RelevanceASD affects approximately 2.3% of children aged 8 years and approximately 2.2% of adults in the US. First-line therapy consists of behavioral interventions, while co-occurring psychiatric conditions, such as anxiety or aggression, may be treated with specific behavioral therapy or medication.

show abstract

Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities

Cited by 165 publications

References 26 publications

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers

Autism Spectrum Disorder

Contact Info

Product

Resources

About