Abstract

BackgroundGlobally, there is a large documented gap between needs of families and children with developmental disorders and available services. We adapted the World Health Organization’s mental health Gap-Intervention Guidelines (mhGAP-IG) developmental disorders module into a tablet-based android application to train caregivers of children with developmental disorders. We aimed to evaluate the effectiveness of this technology-assisted, family volunteers delivered, parents’ skills training intervention to improve functioning in children with developmental disorders in a rural community of Rawalpindi, Pakistan.MethodsIn a single-blinded, cluster randomized controlled trial, 30 clusters were randomised (1:1 ratio) to intervention (n = 15) or enhanced treatment as usual (ETAU) arm (n = 15). After screening, 540 children (18 participants per cluster) aged 2–12 years, with developmental disorders and their primary caregivers were recruited into the trial. Primary outcome was child’s functioning, measured by Childhood Disability Assessment Schedule for Developmental Disorders (DD-CDAS) at 6-months post-intervention. Secondary outcomes were parents’ health related quality of life, caregiver-child joint engagement, socio-emotional well-being of children, family empowerment and stigmatizing experiences. Intention-to-treat analyses were done using mixed-models adjusted for covariates and clusters.ResultsAt 6-months post-intervention, no statistically significant mean difference was observed on DD-CDAS between intervention and ETAU (mean [SD], 47.65 [26.94] vs. 48.72 [28.37], Adjusted Mean Difference (AMD), − 2.63; 95% CI − 6.50 to 1.24). However, parents in the intervention arm, compared to ETAU reported improved health related quality of life (mean [SD] 65.56 [23.25] vs. 62.17 [22.63], AMD 5.28; 95% CI 0.44 to 10.11). The results were non-significant for other secondary outcomes.ConclusionsIn the relatively short intervention period of 6 months, no improvement in child functioning was observed; but, there were significant improvements in caregivers’ health related quality of life. Further trials with a longer follow-up are recommended to evaluate the impact of intervention.Trial registration Clinicaltrials.gov, NCT02792894. Registered April 4, 2016, https://clinicaltrials.gov/ct2/show/NCT02792894

Highlights

  • There is a large documented gap between needs of families and children with developmen‐ tal disorders and available services

  • To pilot test the intervention, we identified and trained 10 family volunteers in implementing technology assisted, evidence-based, World Health Organization (WHO) mhGAP guidelines with 70 families and children with developmental disorders

  • Intervention We developed the intervention based on the guidelines of WHO mhGAP-IG module on developmental disorders

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Summary

Introduction

There is a large documented gap between needs of families and children with developmen‐ tal disorders and available services. Developmental disorders are lifelong conditions characterized by early childhood onset and a delay in central nervous system development and maturation. The World Health Organization (WHO) has developed evidence-based guidelines, published in the Mental Health Gap Intervention Guide (mhGAP-IG) for the management of priority mental health conditions in low resource settings globally [5]. The WHO mhGAP guidelines take a trans-diagnostic approach (a diagnosis is not required for participation in the program) and are designed to be delivered by non-specialists (health workers, primary health care physicians, nurses). These guidelines are recommended to be integrated into existing community services [6]

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