Adapting parent‐focused interventions for diverse caregivers of children with intellectual and developmental disabilities: Lessons learned during global crises

Abstract

Parent-focused interventions have been designed to provide training and support to caregivers who are essential in achieving positive outcomes for children with intellectual and developmental disabilities (IDD). In 2020, significant crises, including the COVID-19 pandemic and continued racial tensions, profoundly impacted the livelihood of children with IDD and their families. Many ongoing efforts to address disparities among this population were halted temporarily and required further adaptations. Researchers adapted interventions and support to address the disparities impacting children with IDD and their families with limited guidance. We provide a descriptive case analysis of four parent-focused interventions that responded to the global crises to continue serving children with IDD and their families. The four distinct programs were based on applied behavior analysis and naturalistic, developmental-behavioral paradigms that were culturally adapted for families of young children with IDD from diverse cultural and socioeconomic backgrounds. We present the qualitative reports on the challenges and benefits that arose with adapting the four parent-focused interventions for telehealth implementation. We focused specifically on adaptations made in recruitment and retention, instrumentation and measurement, research staff training, and intervention delivery. We synthesize our experience with challenges and solutions in adapting parent-focused interventions for racially/ethnically and socioeconomically diverse children with IDD and their families. We conclude with recommendations for researchers and practitioners on methods for adapting parent-focused interventions to address the significant health disparities that impact racially, ethnically, and socioeconomically diverse children with IDD and their families.

Practitioners' experiences of delivering parenting interventions remotely: A mixed‐methods study

“…The limited evidence, to date, on the effectiveness and feasibility of remote parent training for families of children with disabilities, has mainly focussed on families of children with autism (Ingersoll et al, 2017; Neely et al, 2017; Unholz‐Bowden et al, 2020; Vanegas et al, 2022). To our knowledge, there is no evidence for the efficacy of remote GSSTP.…”

Microlearning-Supported Telehealth Approach for Addressing Developmental Disorders in Children: Challenges and Opportunities in Pakistan

“…However, this has also intensified inequalities, particularly in Low-and Middle-Income Countries (LMICs) with poor infrastructure, as parents without access to the necessary technology or internet connectivity are at a greater risk of losing therapeutic services for their children. Telehealth, especially, is difficult to implement in such contexts, as language barriers and lower education levels prove to be a hurdle [2]. This results in parents having to take on greater responsibility for their child's daily educational and therapeutic plans [3], leading to increased anxiety and depression among caregivers of children with DD in Pakistan [4].…”

Telehealth-delivered caregiver training for autism: Recent innovations

“…Despite this, it is important to remember that children and families are often resilient in the face of adversity ( 20 , 21 ). While causing undeniable hardship, the pandemic and the measures to contain it have also inspired innovation and propelled the use of digital technologies forward, including for training caregivers ( 22 , 23 ).…”