Improving Access to Caregiver-Mediated Early Interventions: The Who Caregiver Skills Training for Families of Children with Developmental Disorders or Delays

Background: The majority of children with ASD and other developmental disorders live in low- and middle-income countries, where the treatment gap for these conditions is estimated to exceed 80%. The lack of skilled human resources, especially at the primary health care and community level, is recognized by the World Health Organization (WHO) as a major barrier to increasing service provision. The WHO mhGAP Intervention Guide provides guidance on developmental assessment and monitoring, and management of developmental disorders at primary health care level. The management plan includes offering caregiver-mediated early interventions, in light of the evidence of significant gains to children and families, but open-access, affordable caregiver-mediated programs that can be delivered by non-specialists in low-resource settings are not currently available.

Objectives: to develop a Caregiver Skills Training program for families of children with developmental disorders or delays (CST) meeting feasibility criteria for implementation at scale in low-resource settings.

Methods: A formative process was set up by WHO and partners, including: a) literature review, including analysis of implementation processes and components analysis using meta-regression techniques, and b) expert consultation. The expert consultation comprised of a meeting hosted by WHO and subsequent distance consultation with experts to define the intervention content and structure and capacity building strategies. Major issues discussed included target age group, inclusion/exclusion criteria for families receiving the intervention, number and length of sessions, strategies to reduce attrition, approaches to enable addressing individualized and heterogeneous needs of families and involvement of other family members.

Results: The literature review showed that caregiver-mediated interventions can be effectively delivered by non-specialists, and even low-intensity programs lead to improved child developmental and behavioral outcomes and improved family well-being. The moderation analysis showed that programs including behavior management techniques and instruction on the use of cognitive interventions to the caregivers had larger effect sizes. Caregiver skills training programs that used a combined delivery format of group and individual sessions had greater effect sizes in problem behavior reduction. A family-centered approach and stepped-care model were recommended, whereby the specific strengths and needs of families are assessed to ensure the program is relevant and referral to other available services is made whenever required. The need to allow for adaptation and flexibility to meet the realities of the local context and local health and educational systems was highlighted. The engagement of families and communities was considered paramount to make caregivers’ attendance and participation to the program feasible. A modular organization, with ‘core’ sessions followed by additional optional sessions, as per specific needs and availability of resources, was proposed. Continuous support and supervision was discussed to be a critical element for effective implementation of CST by non-specialist providers.

Conclusions: Based on the evidence and experts’ guidance, a package comprising intervention manuals, and adaptation, capacity building and Monitoring & Evaluation tools was developed and made available for field testing. The program aims to improve children’s communication and adaptive behaviors and caregivers’ wellbeing. The CST is currently being field tested in 30 countries from all regions, including high-income and low-and-middle-income countries.