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Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum.

ABSTRACT: Introduction: People on the autism spectrum often experience poorer health than the general population despite higher engagement with the health services. This suggests a disparity in the accessibility of appropriate healthcare for autistic individuals. To improve access, barriers the autism community experience in healthcare first need to be identified. This paper aimed to: 1) develop and evaluate a caregiver-report tool; 2) identify barriers to physical healthcare for autistic individuals; and 3) identify potential contributing factors.

Methods: A previously established taxonomy of barriers to healthcare for autistic individuals informed the development of the tool; this was then distributed to caregivers of autistic adults and children. Exploratory factor analysis (EFA) assessed validity and reliability of the tool. Multiple Regressions were performed to identify predictors of barriers.

Results: In total, caregivers of 194 autistic children or adults participated in the study. The EFA produced four factors: 1) patient-level barriers; 2) healthcare provider-level (HCP) barriers; 3) healthcare system-level barriers; and 4) barriers related to managing healthcare. The greatest barriers included difficulties with identifying/reporting symptoms (endorsed by 62.4% of participants); difficulties handling the waiting area (60.3% of participants); and a lack of HCP knowledge regarding autism (52.1% of participants). Autism severity, general adjustment problems, anxiety, age and having unmet needs predicted the frequency and/or severity of barriers.

Conclusions: A tool that allows assessment of patient-, HCP-, and system-level barriers to healthcare was developed and evaluated. Patient-level barriers appear to occur frequently and pose substantial challenges. This tool will help identify areas most in need of intervention and support intervention evaluation.

SUBMITTER: Walsh C

PROVIDER: S-EPMC7554131 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum.

Walsh C C Lydon S S Hehir A A O'Connor P P

Research in autism spectrum disorders 20201014

<h4>Introduction</h4>People on the autism spectrum often experience poorer health than the general population despite higher engagement with the health services. This suggests a disparity in the accessibility of appropriate healthcare for autistic individuals. To improve access, barriers the autism community experience in healthcare first need to be identified. This paper aimed to: 1) develop and evaluate a caregiver-report tool; 2) identify barriers to physical healthcare for autistic individua ...[more]

PMID: 33072182

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Project description:Background:A lack of specialists, and insufficient infrastructure and funding to scale early interventions for autism spectrum disorder (ASD) characterize low-resource settings. Integration of early intervention methods that utilize non-specialists, and involve caregivers, into existing systems of care, offers the best hope to address such unmet needs. In South Africa, a caregiver coaching intervention, informed by principles of the Early Start Denver Model (ESDM) was adapted for delivery by non-specialist Early Childhood Development (ECD) practitioners. This study explored perceived barriers and facilitators to sustainable implementation of this approach. Methods:Nine stakeholders including caregivers, ECD practitioners, ECD school supervisors, and certified South African ESDM therapists involved in intervention implementation were purposively sampled, and individual in-depth interviews were conducted. Interviews were transcribed verbatim and thematically analyzed. Results:Implementation facilitators included: ECD practitioner ASD knowledge and ongoing supervision; a positive coaching experience; and clear illustration of intervention concepts. Implementation barriers included: complexity of some intervention and coaching concepts; logistical challenges such as time constraints and internet access; and mismatch between video content and the South African context. Facilitators to sustain the intervention included perceived positive child and caregiver outcomes; and ongoing supervision. Barriers to sustain the intervention included socio-economic contextual factors. Conclusions:In spite of the potential for positive child and caregiver outcomes from caregiver coaching, broader contextual and system-level issues such as poverty, the need for ongoing supervision, and access to local coaching materials in South African languages, may challenge sustainable implementation. Findings from this study will inform tailoring of the intervention training and supervision approach for next step evaluation.

Project description:BACKGROUND:Currently, no medications are approved to treat core symptoms of autism spectrum disorder (ASD). One barrier to ASD medication development is the lack of validated outcome measures able to detect symptom change. Current ASD interventions are often evaluated using retrospective caregiver reports that describe general clinical presentation but often require recall of specific behaviors weeks after they occur, potentially reducing accuracy of the ratings. My JAKE, a mobile and Web-based mobile health (mHealth) app that is part of the Janssen Autism Knowledge Engine-a dynamically updated clinical research system-was designed to help caregivers of individuals with ASD to continuously log symptoms, record treatments, and track progress, to mitigate difficulties associated with retrospective reporting. OBJECTIVE:My JAKE was deployed in an exploratory, noninterventional clinical trial to evaluate its utility and acceptability to monitor clinical outcomes in ASD. Hypotheses regarding relationships among daily tracking of symptoms, behavior, and retrospective caregiver reports were tested. METHODS:Caregivers of individuals with ASD aged 6 years to adults (N=144) used the My JAKE app to make daily reports on their child's sleep quality, affect, and other self-selected specific behaviors across the 8- to 10-week observational study. The results were compared with commonly used paper-and-pencil scales acquired over a concurrent period at regular 4-week intervals. RESULTS:Caregiver reporting of behaviors in real time was successfully captured by My JAKE. On average, caregivers made reports 2-3 days per week across the study period. Caregivers were positive about their use of the system, with over 50% indicating that they would like to use My JAKE to track behavior outside of a clinical trial. More positive average daily reporting of overall type of day was correlated with 4 weekly reports of lower caregiver burden made at 4-week intervals (r=-0.27, P=.006, n=88) and with ASD symptoms (r=-0.42, P<.001, n=112). CONCLUSIONS:My JAKE reporting aligned with retrospective Web-based or paper-and-pencil scales. Use of mHealth apps, such as My JAKE, has the potential to increase the validity and accuracy of caregiver-reported outcomes and could be a useful way of identifying early changes in response to intervention. Such systems may also assist caregivers in tracking symptoms and behavior outside of a clinical trial, help with personalized goal setting, and monitoring of progress, which could collectively improve understanding of and quality of life for individuals with ASD and their families. TRIAL REGISTRATION:ClinicalTrials.gov NCT02668991; https://clinicaltrials.gov/ct2/show/NCT02668991.

Dataset Information

Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum.

Publications

Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum.

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