Development of the WHO Caregiver Skills Training Program for Developmental Disorders or Delays

Abstract

Globally, 52.9 million children under the age of 5 experience a developmental disability, such as sensory impairment, intellectual disability, and autism spectrum disorders. Of these 95% live in low-and-middle-income countries. Most of these children lack access to care. In light of the growing evidence that caregivers can learn skills to support their children’s social communication and adaptive behavior and to reduce their challenging behavior, the World Health Organization developed a novel Caregiver Skills Training Program (CST) for families of children with developmental disorders or delay to address such treatment gap. This report outlines the development process, content, and global field-testing strategy of the WHO CST program. The CST program is designed to be feasible, scalable, and adaptable and appropriate for implementation in low-resource settings by nonspecialists. The program was informed by an evidence review utilizing a common elements approach and was developed through extensive stakeholder consultation and an iterative revision process. The program is intended for a global audience and was designed to be adapted to the cultural, socioeconomic, geographic, and resource context in which it is used to ensure that it is comprehensible, acceptable, feasible, and relevant to target users. It is currently undergoing field-testing in more than 30 countries across all world regions.

Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood

“…9 The World Health Organization (WHO) has developed and implemented Caregiver Skill Training (CST) programs in over 30 countries, which boosts family awareness of ASD needs and services in local contexts. 34,35 Language Language barriers also hinder access to and navigation of healthcare services for ASD. In Canada, the USA, and the UK, parents of children with ASD, for whom English is not the first language, encountered language barriers when accessing health services, communicating with their physicians, and interpreting/ responding to administrative forms.…”

“…Effective community-delivered programs have been implemented in many LRCs to increase access to care. These include the WHO-led CST programs (described above), which are active in several LRCs, including the Philippines, Ethiopia, and China, 34,35,98 and PASS Plus, a program delivered in rural India, which integrates support for autism comorbidities. 99 These initiatives could be modified and adapted to an online delivery format to train families in LRCs on the medical needs of autistic individuals and provide information on navigating local healthcare systems.…”

Measuring functional disability in children with developmental disorders in low-resource settings: validation of Developmental Disorders-Children Disability Assessment Schedule (DD-CDAS) in rural Pakistan

“…The current study was embedded within a scaled-up implementation of a PST programme, based on guidance from WHO's mhGAP-IG (WHO, 2017) and using core contents (‘key messages’ and strategies) of the WHO Caregivers Skills Training (CST) programme (Salomone et al ., 2019). Data collection took place over a period of 6 months (Hamdani et al ., 2017).…”

Mothers as facilitators for a parent group intervention for children with Congenital Zika Syndrome: Qualitative findings from a feasibility study in Brazil

“…Comparison of our findings is also possible with other interventions for children with developmental disabilities in different low resourced settings, such as: (i) a Caregiver Skills Training (CST) for caregivers of children with intellectual disabilities [34,35], developed by the World Health Organisation, (ii) 'Titukulane', an eight module community group intervention that aims provide contextualised psychological support to caregivers of children with intellectual disabilities [36], (iii) Learning through Everyday Activities with Parents (LEAP-CP), which aims to improve the mobility of children with cerebral palsy over 30 weekly peer-to-peer home visits [37], and (iv) PASS, a parent-mediated intervention for autism spectrum disorder in India and Pakistan [38] that was adapted for delivery by non-specialist workers and uses video feedback methods to address parent-child interaction. The focus on caregiver involvement is a common thread in all of these interventions, which is critical, particularly where there are few health services.…”