International Field-Test of the Who Caregiver Skills Training for Families of Children with Developmental Disorders or Delays

Background: Despite evidence of significant gains to children and families from parent-mediated early interventions, open-access programs deliverable by non-specialists in low-resource settings are not currently available. To reduce the treatment gap, as part of the mhGAP initiative, WHO, with support from Autism Speaks developed through systematic literature reviews and expert consultation a novel Caregiver Skills Training (CST) program. The CST aims to meet feasibility criteria for implementation in low-resource settings. Its core psycho-education strategies, informed by principles of behavior analysis, developmental science, social-communication interventions, positive parenting and self-care, aim to be cross-culturally valid and acceptable.

Objectives: to compile data on field-testing of WHO CST in a variety of settings and regions

Methods: The CST suite of materials (intervention manuals, adaptation and capacity building tools; Monitoring & Evaluation (M&E) Framework) was made available for field-testing. Sites involved in field-testing (N=29) are located in all world regions: African (n=4), Americas (n=9), Eastern Mediterranean (n=5), European (n=4), South-East Asia (n=2), and Western Pacific Region (n=5). Participating sites progress through four Phases outlined in the M&E framework: 1) Planning and Adaptation (21% of sites); 2) Training of Trainers (ToT) and Post-ToT practice (38%); 3) Pre-pilot field-testing (17%); 4) Pilot testing (24%). Sites representatives completed an online survey including multiple choice and open-ended questions regarding: a) adaptation processes; b) project implementation characteristics; c) challenges and lessons learnt from field-testing.

Results: Program materials have been translated into 18 languages. The majority of sites (n=26) reported adapting the program to the local context, mostly with minor measures: of these, 76% were adaptations of content (e.g. language use, idioms), 17% adaptations to improve feasibility (e.g. childcare) and 7% adaptations of processes (e.g. frequency of group sessions). Major adaptations include: adaptation of the delivery method (technology application; 1 site) and of program contents for participants with low literacy (e.g., simplification of participant booklets, adding additional psychoeducation; 2 sites). Reported frequency of sessions (planned or actual) was generally weekly (72%). Sites reported planned or actual implementation in a variety of settings, often in combination: public health settings (76%), community centers (41%), public or NGO education settings/schools (48%), university/faith-based setting/private (14%). Target diagnostic groups were in most cases autism (83%), developmental delay/intellectual disability (75%) and other neurodevelopmental disorders or concerns. Reported challenges from Phases 1-2 include: difficulties in securing funding and collaboration with stakeholders; need to devise sustainable intervention fidelity support strategies; challenges in selecting site-specific useful and validated outcome measures. Most endorsed challenges from Phases 3-4 include: selection criteria for master trainers and facilitators (clinical experience, motivation); good acceptability but feasibility issues for home visits and videorecording (safety, travel, lack of time); lack of childcare as a barrier to attendance.

Conclusions: Survey data from participating sites indicate good progress on global field-testing of WHO CST. Lessons learnt from the M&E phases are progressively compiled and inform support strategies to field-testing sites. Feasibility, acceptability and effectiveness data are being collected and will inform revision and preparation of the WHO CST programme materials and tools for wider release and dissemination.