Pragmatic adaptations of telehealth-delivered caregiver coaching for children with autism in the context of COVID-19: Perspectives from the United States and South Africa

Abstract

When COVID-19 disrupted autism spectrum disorder research globally, many clinical trials of behavioral interventions pivoted to telehealth. Telehealth has the potential to increase geographic reach and improve racial/ethnic diversity in research. This matters because most autism spectrum disorder intervention studies have primarily included White, upper-middle-income families from North America and Europe. Participant homogeneity limits our ability to identify what types of intervention works in which context for which populations. Importantly, telehealth needs to “fit” the local context, and in particular, include strategies that factor in the “digital divide.” This short report details contextual considerations and pre-implementation pragmatic adaptations in two autism spectrum disorder clinical trials that include Early Start Denver Model–informed caregiver coaching in the United States and South Africa. By comparing and contrasting how implementation context informed the telehealth pivot in these two clinical trials in different hemispheres, we highlight equity considerations for adaption. The pandemic is an opportunity to understand how remote intervention can “fit” diverse contexts, while providing valid scientific results. It is however important that adaptations be documented and feasibility of the adapted approach be tracked. COVID-19-related telehealth adaptations of behavioral interventions could facilitate the development of new strategies with wider global impact. Lay abstract COVID-19 caused many autism spectrum disorder caregiver-coaching studies to move to telehealth. Telehealth can increase the diversity of people who take part in research. This matters because most autism spectrum disorder studies have included people who have resources, are White, and live in North America and Europe. When study participants are similar, it is hard to understand which interventions can help different types of people who live in different parts of the world. While telehealth may allow more people to take part in research, it needs to “fit” the local context and consider the “digital divide” because many people around the world have no access to computers and the Internet. This short report describes changes to two research studies that include caregiver coaching based on the Early Start Denver Model in the United States and South Africa. We describe how the local context, including technology and Internet access, guided the telehealth approach. By doing so, we highlight ways to make telehealth available to more people around the world. The pandemic can help us understand how telehealth can “fit” diverse places and support high-quality research. It is important that study changes are tracked and we assess how well the changes work. COVID-19 telehealth changes to caregiver coaching can result in new ways to reach more people around the world.

Adaptations and staff experiences in delivering parenting programmes and other family support services in three community-based organisations in Cape Town, South Africa during the COVID pandemic

“…Barriers to digital delivery have also been identified in other projects examining remotely delivered family programmes (Barnett et al, 2021;Canário et al, 2022;Franz et al, 2021). One study noted differences in adapting to remote delivery between settings in USA and South Africa.…”

“…One study noted differences in adapting to remote delivery between settings in USA and South Africa. In South Africa, due to more limited computer and internet access, implementation required more extensive training of the facilitators in the digital version and creating a low-bandwidth and offline versions of the programme (Franz et al, 2021). Programmes that combine digital and in-person elements may help combine human connection with more flexible access to services.…”

A Review of Parent-Implemented Early Start Denver Model for Children with Autism Spectrum Disorder

“…The purpose of telehealth parent training is to support and equip parents with the tools to intervene and create natural moments with their child in addition to or while waiting for more intensive services to begin [ 63 ]. Crucially, since the onset of COVID-19 pandemic, a number of clinical trials pivoted to telehealth [ 64 ]. Telehealth may provide more opportunities for more people around the world.…”

Telehealth-delivered caregiver training for autism: Recent innovations

“…Shreiberman and colleagues advocate for six research considerations to advance the development of NDBIs, including larger scale RCTs to address moderators, mediators and efficiency of treatments; measurement of functional changes in child behavior; analysis of the active ingredients within multicomponent interventions; measurements of treatment fidelity; testing treatment strategies for children who are poor responders; and use of implementation science to facilitate broad implementation ( 24 ). Furthermore, there is a need to test interventions across a range of different populations and contexts ( 27 ).…”

“…Programs that train caregivers to deliver NDBIs have typically been offered in person, in group or individual format and typically involve teaching skills and strategies using instruction, modeling, rehearsal, and feedback ( 25 , 26 ). The use of telehealth (the provision of health services, information and education over the Internet and related technologies) offers an attractive option for scaling up care globally and has been proposed to address barriers to traditional caregiver training, including cost, lack of time, geographic isolation, lack of transportation and lack of childcare ( 27 , 28 ). According to WHO, digital health technologies can improve accessibility, quality and affordability of health services, and should “complement and enhance existing health service delivery models, strengthen integrated, people-centered health services and contribute to improved population health, and health equity…” ( 29 ).…”