Search

Abstract Background Autistic children often experience socioemotional difficulties relating to emotion regulation and mental health problems. Supports for autistic children involve the use of adapted interventions that target emotion regulation and social skills, alongside mental health symptoms. The Secret Agent Society Small Group (SAS: SG), an adapted cognitive behavioural program, has demonstrated efficacy through lab-delivered randomized control trials. However, research is still needed on its effectiveness when delivered by publicly funded, community-based autism providers under real-world ecologically valid conditions, especially within the context of a pandemic. The COVID-19 pandemic has disrupted access to community-based supports and services for autistic children, and programs have adapted their services to online platforms. However, questions remain about the feasibility and clinical utility of evidence-based interventions and services delivered virtually in community-based settings. Methods The 9-week SAS: SG program was delivered virtually by seven community-based autism service providers during 2020–2021. The program included the use of computer-based games, role-playing tasks, and home missions. Caregivers completed surveys at three timepoints: pre-, post-intervention, and after a 3-month follow-up session. Surveys assessed caregivers’ perception of the program’s acceptability and level of satisfaction, as well as their child’s social and emotional regulation skills and related mental health challenges. Results A total of 77 caregivers (94% gender identity females; Mean = 42.1 years, SD = 6.5 years) and their children (79% gender identity males; Mean = 9.9 years, SD = 1.3 years) completed the SAS: SG program. Caregivers agreed that the program was acceptable (95%) and were highly satisfied (90%). Caregivers reported significant reduction in their child’s emotion reactivity from pre- to post-intervention (-1.78 (95% CI, -3.20 to -0.29), p = 0.01, d = 0.36), that continued to decrease after the 3-month booster session (-1.75 (95% CI, -3.34 to -0.16), p = 0.02, d = 0.33). Similarly, improvements in anxiety symptoms were observed (3.05 (95% CI, 0.72 to 5.36), p = 0.006, d = 0.39). Conclusions As online delivery of interventions for autistic children remains popular past the pandemic, our findings shed light on future considerations for community-based services, including therapists and agency leaders, on how best to tailor and optimally deliver virtually based programming. Trial registration This study has been registered with ISRCTN Registry (ISRCTN98068608) on 15/09/2023. The study was retroactively registered.

Background The COVID-19 pandemic significantly impacted the mental health of adults with intellectual and developmental disabilities (IDD). During this period of uncertainty and need for up-to-date information, various virtual training programmes demonstrated the role of tele-mentoring programmes. Aim The aim of this paper is to describe the educational evaluation of the National Extension for Community Healthcare Outcomes – Adults with Intellectual and Developmental Disabilities (ECHO-AIDD), a programme for service providers working with adults with IDD during COVID-19. Method The programme consisted of six sessions, conducted weekly, over two cycles. Each session included didactic teaching by hub team members, COVID-19 news updates, wellness check-ins and a brief mindfulness activity, followed by a 30 to 45 min case-based discussion. The hub structure had an inter-professional approach to team expertise. Those with lived experience were an integral part of the content experts’ hub. Pre-, post- and follow-up evaluation data were collected. Results Care providers from health and social care sectors (n = 230) participated in the programme. High levels of engagement and satisfaction were reported. Self-efficacy ratings improved from pre- to post-, and were maintained at 8-week follow-up; improvement from pre- to post- was significant (P < 0.0001). Conclusion Exposure to National ECHO-AIDD educational intervention led to improvement in perceived competencies. This study also shows the valuable role of people with lived experience in fostering adaptive expertise in learners. The outreach and scalability support the feasibility of building a national virtual community of practice for IDD service providers. Future studies should focus on studying the impact of these programmes on the health outcomes of people with IDD.

Background: The COVID-19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co-designed tool, the COVID Check-in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check-in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups. Findings: Forty-four percent of participants engaged in the Health Check-in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check-in, along with challenges using the COVID Check-in Tool, according to both the adults with disabilities who were interviewed and the family caregivers. Conclusions: The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical.

Emerging research shows that Acceptance and Commitment Therapy (ACT) may improve mental health for caregivers. Parents of autistic children, adolescents, and adults (N = 54) were randomly assigned to either complete a brief group-based ACT intervention or remain on the waitlist. Participants completed surveys immediately prior to randomization, and 3-, 7-, and 17-weeks post-randomization. The primary outcome was depression symptoms and secondary outcomes included stress, goal attainment, positive affect, ACT psychological processes, child mental health, and family functioning. Mixed effects linear models testing Group × Time interaction indicated the Treatment group (n = 27) demonstrated greater post-intervention improvements than the Waitlist group (n = 27) in parent depression (p = 0.03, d = -0.64) and family distress (p = 0.04, d = -0.57). Treatment group parents also reported greater short-term gains in positive affect (p =< 0.001, d = 0.77) and personal goal attainment (p = 0.007, d = 0.80), compared to the Waitlist group. Although there was no significant Group × Time interaction for other outcomes, stress (b = -2.58, p = 0.01), defusion (b = -3.78, p = 0.001), and experiential avoidance (b = -4.22, p = 0.01) showed improvement for the Treatment group, but not the Waitlist group, at post-intervention. All Treatment group improvements were maintained at follow-up. Results suggest that a brief ACT group intervention is efficacious for improving some aspects of mental health for parents of autistic children.

There are significant research gaps with regard to understanding and addressing the mental health concerns of adults with intellectual and developmental disabilities (IDD) and their families. In this article, we reflect on research we have carried out about mental health and IDD prior to and during the pandemic in Ontario, Canada. We aim to address how partnering with people with IDD, family caregivers, service providers, and policy makers can help accelerate needed progress in this area. We conclude with some lessons learned during the pandemic about what to emphasize in building and maintaining such partnerships., (©AAIDD.)