Active Pregnancy, Children & Inherited Conditions Psychology & Behaviour

SPARK: SuPporting African communities to increase the Resilience and mental health of Kids with developmental disorders and their caregivers.

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In Ethiopia and Kenya, families of children with developmental disorders are being offered a structured training programme to help them manage their child’s behaviour and improve their own mental health. This matters because most children with developmental disorders in sub-Saharan Africa are never formally identified, receive no support, and are often subjected to physical punishment or locked in homes. Their caregivers frequently report severe stress, depression, and suicidal thoughts. The World Health Organization’s Caregiver Skills Training (CST) programme—delivered by non-specialists—has shown promise in pilot trials, but its real-world effectiveness has not been proven. If this trial succeeds, the CST could be embedded within existing health and education systems across low-income settings. That would mean a scalable, cost-effective model for identifying children with developmental disorders, training their caregivers, and reducing stigma—without requiring expensive specialist staff. The project will also co-develop an integrated care model linking community detection, health assessment, and ongoing support, which could be adapted for other resource-poor regions, particularly across sub-Saharan Africa.

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Background: Sub-Saharan African families with children with developmental disorders (DD) experience severe challenges, including social isolation, stigma and poverty. Caregivers frequently report mental health problems and suicidal ideation. Most African children with DD remain unidentified and receive no formal support. Children are often subjected to physical punishment and locked in their homes. The non-specialist led Caregiver Skills Training (CST) programme developed by the World Health Organization teaches caregivers strategies to promote their child s communication and learning and reduce problem behaviours. Furthermore, the CST aims to reduce caregiver stress and improve mental health. In separate pilot trials in Ethiopia and Kenya our team found the CST to be feasible and acceptable. However, the effectiveness of the programme remains to be established. Moreover, for successful implementation the CST must be embedded within existing health and education systems. Aims: Evaluate the effectiveness of the CST in improving wellbeing and mental health of Ethiopian and Kenyan children with DD and their caregivers and co-develop an integrated care model, promoting identification and referral of children with DD, community-based support and inclusion. Methods and timelines: This study is conducted in 4 sites, spanning urban and rural Ethiopia and Kenya. Pre-implementation phase (completed end year 1): using the Theory of Change (ToC) approach, a training package will be co-developed with local stakeholders to raise DD awareness and address stigmatising beliefs. The package will include a Community Informant Detection Tool (CIDT) to improve identification of DD. Identified children will be referred to mhGAP-trained health officers for assessment, who will refer families to the CST if appropriate. Phase 1 (completed end year 2): The training package will be implemented in 16 geographically separated clusters across all 4 sites. The acceptability and feasibility of the training will be assessed using quantitative process measures and qualitative interviews and focus group discussions. The accuracy of the CIDT in identifying DD will be assessed by a clinical specialist masked to CIDT outcome. Phase 2 (completed halfway year 4): Caregivers (total n=476) of eligible children identified in phase 1 will be invited to participate in a hybrid type I pragmatic effectiveness clustered randomised controlled trial of the CST. Clusters will be randomly allocated to intervention arm or waitlist control arm receiving enhanced treatment. Two co-primary outcomes assess caregivers quality of life (strongly associated with mental health) and child behavioural problems. In addition to secondary outcome measures, costs of the CST implementation and enhanced treatment will be estimated to establish the CST s cost-effectiveness. Informed by implementation frameworks quantitative and qualitative implementation outcomes will be assessed to explore the contextual barriers and facilitators of intervention implementation. Using the ToC approach a multi-sectoral integrated care model will be co-developed with local stakeholders, considering health, education and social care systems and the wider community context. Anticipated Impact: This project will generate evidence on how to implement a sustainable model of care for children with DD in a context of high need and extremely limited resources. The findings will be relevant to other low-income settings, especially in sub-Saharan Africa.

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