Title: SPARK: SuPporting African communities to increase the Resilience and mental health of Kids with developmental disorders and their caregivers.
Funder: Department of Health and Social Care

Abstract: 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.

Lay abstract: African children with developmental disorders (including intellectual disability and autism) and their caregivers experience severe challenges. Due to community stigma and parental blame, children with developmental disorders are often locked in their home. Most children with developmental disorders in sub-Saharan Africa do not attend school and receive no formal support. Affected families often live in poverty as care responsibilities mean caregivers are unable to work. Caregivers report severe stress and social isolation; many caregivers report mental health problems, including suicidal thoughts. This project aims to improve the wellbeing and mental health of children with developmental disorders and their caregivers, by developing and evaluating a model of care with and for local communities. First, we propose to train persons who know the local child community well (e.g. health workers or teachers) to help them identify children with developmental disorders and to raise community awareness. Identified children will be referred to the new Caregivers Skills Training (CST) programme developed by the World Health Organization (WHO). Second, we will test how well the CST works and whether the programme provides value for money. The CST teaches caregivers strategies to support their child s development and reduce challenging behaviours. The programme also addresses caregiver wellbeing, and because the programme is delivered in groups it helps parents escape social isolation. Third, we will involve local leaders, teachers, health workers and parents of children with developmental disorders in the development of the care model so that barriers to accessing health and education services can be overcome, and to promote community-based support and inclusion. Our team has previously adapted and pilot-tested the CST programme in Ethiopia and Kenya, showing that the training can be delivered by non-specialist facilitators and is liked by caregivers. In this new project we propose to conduct the first large scale evaluation of the impact of the programme across both countries, including rural and urban settings. In addition to comparing families who participated in the programme with families who have not yet taken part, we will collect information from each setting to explore context-specific issues. Local communities and stakeholders have been involved in all our previous studies in Kenya and Ethiopia. This project will benefit from their ongoing input to make sure the care model proposed meets the local needs and fits in within the existing health and education systems. Supported by academics from King's College London, University of Oxford and WHO, the research will be conducted by Ethiopian and Kenyan researchers, clinicians and students. The findings will be shared with local stakeholders, including policy makers, local and national governments as well as with WHO and international partners to inform future implementation of care models for children with developmental disorders across the world.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;6.7 PHYSICAL
Health categories: MENTAL HEALTH