ABSTRACT
Background: Practitioners report a lack of knowledge and confidence in treating autistic children, resulting in unmet healthcare needs. The Extension of Community Healthcare Outcomes (ECHO) Autism model addresses this through discussion of participant-generated cases, helping physicians provide best-practice care through co-created recommendations. Recommendations stemming from ECHO cases have yet to be characterized and may help guide the future care of autistic children. Our objective was to characterize and categorize case discussion recommendations from Project ECHO Ontario Autism to better identify gaps in clinician knowledge. Methods: We conducted a summative content analysis of all ECHO Ontario Autism case recommendations to identify categories of recommendations and their frequencies. Two researchers independently coded recommendations from five ECHO cases to develop the coding guide. They then each independently coded all remaining cases and recommendations from three cycles of ECHO held between October 2018 to July 2021, meeting regularly with the ECHO lead to consolidate the codes. A recommendation could be identified with more than one code if it pertained to multiple aspects of autism care. Categories from the various codes were identified and the frequency of each code was calculated. Results: Of the 422 recommendations stemming from 62 cases, we identified 55 codes across ten broad categories. Categories included accessing community resources (n = 224), referrals to allied health and other providers (n = 202), ongoing autism care (n = 169), co-occurring mental and physical health conditions (n = 168), resources and tools for further learning (n = 153), physician to provide education and coaching to families (n = 150), promoting parent and family wellness (n = 104), supporting community autism diagnosis (n = 97), promoting patient empowerment and autonomy (n = 87), and COVID-19 (n = 26). Conclusion: This is the first time that recommendations from ECHO Autism have been characterized and grouped into categories. Our results show that advice for autism identification and management spans many different facets of community-based care. Specific attention should be paid to providing continued access to education about autism, streamlining referrals to allied health providers, and a greater focus on patient- and family-centered care. Physicians should have continued access to autism education to help fill knowledge gaps and to facilitate families' service navigation.
ABSTRACT
Background The rising prevalence of autism spectrum disorder (ASD) diagnoses has caused an increased number of community practitioners to care for this population. However, community practitioners report a lack of knowledge and confidence in treating these patients, resulting in unmet healthcare needs. The Extension of Community Healthcare Outcomes (ECHO) Autism model aims to address this through case-based and didactic learning to help guide community practitioners in providing comprehensive, best-practice care for ASD screening, diagnosis, and management of co-occurring conditions. Each ECHO session involves a case presentation followed by a list of recommendations generated by community participants and an interdisciplinary ‘hub’ team. While ECHO Autism has been shown to improve physicians' abilities to care for children with ASD in their practices, recommendations stemming from ECHO cases have yet to be characterized and may help guide future care. Objectives To quantify and characterize the common categories within ECHO Autism Ontario case recommendations. Design/Methods A content analysis of 422 recommendations from 61 ECHO cases was conducted to identify categories of recommendations and their frequencies. Three researchers independently coded recommendations from five ECHO cases, from which an original coding guide was developed. The researchers then independently coded the remaining cases and met regularly with the ECHO lead to modify and consolidate the codes and coding guide. From there, categories and sub-categories from the various codes were identified. Finally, the frequencies of each code and category were calculated. Results Fifty-seven codes were included in the final coding guide and grouped into eight broad categories. Categories included: 1) diagnosis;2) concurrent mental and physical health conditions;3) referrals to allied health providers and other specialists;4) accessing community resources, such as parent and sibling support groups;5) providing education and guidance to physicians, patients, and families;6) management strategies such as nutrition, physical activity, and social skills;and 7) patient and family-centered care. A COVID-19 category was added, as many of the later recommendations were adapted to online service delivery. An analysis of the frequency of codes found that 1,384 total in-text codes were distributed amongst the various categories. The three highest frequencies of categories were providing general guidance and education (22%), accessing resources (16%), and referrals (15%). Conclusion This is the first time recommendations from ECHO Autism have been characterized and quantified. Our results, particularly the most common category of providing general guidance and education about ASD, show there is still important work to be done with educating clinicians and families about aspects of ASD. Furthermore, findings from this study should inform Pediatrics residency programs about real-world knowledge gaps in ASD care, and may help create more tailored ASD training programs and educational materials.
ABSTRACT
The COVID-19 pandemic has led to an increase in screen time for children and families. Traditionally, screen time has been associated with negative physical and mental health outcomes, and children with autism spectrum disorder (ASD) are at increased risk of these outcomes. The primary objectives of this study were to (1) characterize the change in screen time during COVID-19 school closures for children with ASD, and (2) examine the parent perceived impact of screen time on mental health and quality of life of children and their families. Canadian parents and caregivers of children 19 years of age and younger were eligible to participate in an anonymous, online survey study. This survey was available in English, consisted of 28 questions, took ~10-min to complete, and was available for 6 weeks (May 22 through July 6, 2020). The total sample consisted of 414 responses (ASD: n = 127, mean age = 11.7 ± 4.06 years; community sample: n = 287, mean age = 9.4 ± 4.26 years). Seventy-one respondents were missing responses to our primary question and removed from the analyses (final sample n = 344). Compared to the community sample, the ASD group had a significantly higher screen time use before and during the COVID-19 pandemic school closures [weekdays: difference = 1.14 (SE = 0.18), t = 6.56, p < 0.0001; weekends: difference = 1.41 (SE = 0.20), t = 6.93, p < 0.0001]. Mean total screen time during the pandemic was 6.9 h (95% CI 6.49, 7.21) on weekdays and 6.3 h (95% CI 5.91, 6.63) on weekends for the ASD group, and 5.6 h (95% CI 5.28, 5.92) on weekdays and 5.0 h (95% CI 4.70, 5.34) on weekends for the community sample. There was a significant increase in screen time during the COVID-19 pandemic as compared to before the pandemic period in the ASD group [weekdays: mean difference = 3.8 h (95% CI 3.35-4.25), p < 0.0001; weekends: mean difference = 1.5 h (95% CI 1.17-1.92), p < 0.0001]. Gender was a significant predictor of parent perceived mental health and quality of life, with male gender associated with a higher likelihood of negative impact [quality of life (child/family) OR = 1.8 (95% CI 1.1-2.9), corrected p = 0.040; mental health OR = 1.9 (95% CI 1.1-3.1), corrected p = 0.0028]. Parents' most frequently endorsed emotions toward screen time were guilt, frustration, and worry. Results of this survey study revealed that children with ASD were less likely to benefit from screen time to cope with social isolation, and screen time resulted in significantly more lost time on social interactions than the community sample, which may exacerbate difficulties in social domains. Given the unprecedented circumstances of the COVID-19 pandemic and the novel context of technology use, the findings of this study highlight the need for revision of screen time recommendations to reflect the current needs of children and families.