Supporting Families of Young Children With Developmental Disabilities in Kenya: Addressing the Gap Through a Caregiver Skills Training Intervention

Authors: Prof. Amina Abubakar, Prof Charles Newton, Dr. Vibian Angwenyi, Eva Mwangome and SPARK collaborators InstitutionalAffiliation: Institute for Human Development, Aga Khan University, Neurosciences Department, KEMRI-Wellcome Trust Research Programme, Kilifi, Department of Psychiatry, University of Oxford Globally, 53 million young children have disabilities, and 95% of these children live in low- and middle-income countries. In Kenya, most children with developmental disabilities including autism and intellectual disability remain undiagnosed and receive little or no formal help. These children and their families experience multiple challenges, which include stigma, care burden, social isolation, limited access to essential services, and are often left out of programmes and government services. The World Health Organization (WHO) has developed a Caregiver Skills Training (CST) programme that teaches caregivers strategies to help them support their child. CST is designed for use in low resource settings, delivered in nine interactive group sessions and three home visits by trained lay workers. Methods: Using a sequential mixed-methods design, we adapted and pilot tested the CST programme in Nairobi’s urban informal settlements and rural Kilifi, in 2018. First, CST materials were translated to Swahili and pre-tested using qualitative approaches among caregivers and community stakeholders (n=85) to assess its acceptability and cultural appropriateness. In the second phase, 105 caregivers of children 2 -13 years with developmental disorders participated in the CST pilot. The CST programme was considered acceptable and feasible to implement in different socio-cultural settings. Exposure to the CST programme showed improvements in enhanced quality of life for caregivers and improved socio-behavioural outcomes in children. Caregivers reported that CST positively transformed their attitudes and beliefs towards their child’s capabilities and finding better ways to engage them in daily tasks and care.