Innovation summary

Most children with developmental disabilities such as autism and intellectual disability live in low and middle-income countries. In these contexts, due to severe limitations in resources and lack of skilled professionals, affected children often remain unidentified and do not receive formal support after identification. Children and their caregivers experience severe challenges including social exclusion, stigma, and poverty.  

This research project, implemented in two phases, aims to improve the wellbeing and mental health of children with developmental disabilities and their caregivers in Ethiopia and Kenya.  

Phase one involves developing and evaluating a community-based method of identifying children at risk of developmental delays using a community case detection tool and community sensitisation training. Identified children and their families are subsequently invited to take part in phase 2, a randomised controlled trial testing the effectiveness of the World Health Organization’s Caregiver Skills Training Programme delivered by non-specialists.

Impact summary

  • The goal is to identify up to 1000 children with mild to severe developmental disabilities in rural and urban regions of Ethiopia and Kenya in the context of the SPARK study 
  • The effectiveness and cost-effectiveness of the WHO Caregiver Skills Training in improving child behavioural outcomes and parents’ quality of life will be investigated.  
  • The SPARK project will produce the following outputs: a training package for community informants, including a community case detection tool; contextualised adaptations of the WHO Caregiver Skills Training programme and resources to support further adaptations; integrated multi-sectoral care models for health education and inclusion in each of the four project sites.  


"It is a big deal to be able to share with people about your experience. When you can share the things that you didn't even share with your family you become very happy... ” 

 

- Caregiver involved in the Ethiopian pilot study of the WHO Caregiver Skills Training programme (Tekola et. al., 2020)

Innovation details

  • Use a community-based approach to develop a community case detection tool to identify children aged 2-9 years with developmental disabilities. 
  • Evaluate the acceptability, feasibility and accuracy of the tool and associated training for community informants in a large study in four sites in rural and urban Ethiopia and Kenya.  
  • Invite caregivers of identified children for participation in a randomised controlled trial testing the effectiveness of the Caregiver Skills Training Programme. The Caregiver Skills Training is developed by the World Health Organization and teaches parents strategies to improve their children’s adaptive skills, increase their capacity for learning, and reduce challenging behaviours. 
  • In addition to quantitative outcome measures focusing on children’s behavioural outcomes and caregivers’ quality of life, a range of process and qualitative data will be collected.  

Key drivers

Expert Collaborators with Local Expertise: We are collaborating with expert researchers with several decades of experience working in the local Ethiopian and Kenyan contexts. Their research teams also include brilliant early career researchers and students poised to effectively implement the project. 

Local Community Involvement: Through our site-specific national and community advisory boards comprised of other local researchers, government representatives, representatives from special education institutions, and other local stakeholders, we are working to ensure that our methods are culturally appropriate and relevant to increase the chances of sustainment.   

A strong foundation: SPARK is based on two pilot studies completed in Kenya and Ethiopia. The findings and lessons learned from these pilot studies are informing strategies used in the current study.  

Cross-site communication and coordination: To ensure consistency in practice across our research contexts and accuracy when comparing data across contexts, team members communicate frequently. Where cultural practices, geographic differences, and other factors necessitate different approaches, these are carefully documented. Our research will explore the influence of context on the effectiveness of implementation of the intervention, to inform implementation and scale-up in other resource-constrained settings.  

Challenges

Challenges encountered so far include contextual barriers that might impact study participation, including poverty and stigmatisation and discrimination (Abubakar et al., 2022; Gona et al., 2011; Gona et al., 2016 Tekola et al., 2020) that may affect the families the SPARK study is trying to reach, etc. Some strategies we are adopting to address these challenges include sensitisation trainings for the community to increase awareness and promote inclusion of families with children with developmental disabilities.

  

Continuation

By working closely with local researchers and community stakeholders, we are adopting strategies that are aligned with the existing structures to ensure uptake and continuity. For instance, in Ethiopia we plan to train healthcare workers to provide a preliminary assessment for children identified as having delayed development. In contrast, we plan to work within the education system in Kenya as education workers are designated to provide these services within the Kenyan system.   

We will continue to work closely with government officials and representatives from national and international NGOs and international agencies to disseminate our findings and inform policy.  

SPARK is privileged to have a diverse group of early career researchers working on different components of the project, most of whom are based in Ethiopia and Kenya. Their work on SPARK ensures capacity building for research and clinical skills in both countries, building a sustainable base for future research and service expansion supporting families of children with developmental disabilities.  

We also aim to build research capacity to promote further research among other Africa-based researchers by organising short courses, workshops, and monthly webinars on a variety of topics such as complex interventions, implementation science, research dissemination, etc. 

Partners

  • Aga Khan University, Kenya
  • Kenya Medical Research Institute, Kenya 
  • Addis Ababa University, Ethiopia  
  • World Health Organization 
  • Oxford University, United Kingdom 

Funder

National Institute for Health and Care Research (UK) 

Evaluation methods

  1. We are using several qualitative and quantitative approaches to assess the project and its impact on child and caregiver outcomes. These include the acceptability, feasibility, and sensitivity of the CCDT tool, child behavioural outcomes, caregiver and family related outcomes like stigma, quality of life, depression, etc 
  2. We are also keeping track of several process measures to monitor procedures and activities related to the study’s implementation. These include the number of community meetings organised and the range of individuals present at these meetings, the number of children identified using the CCDT tool, proportion of families consenting to participate in the Caregiver Skills Training and drop-out, etc.   
  3. Further, our project will monitor costs from the provider, caregiver, and child’s perspective.   

Cost of implementation

We will study whether the Caregiver Skills Training programme provides good value for money by combining costs and outcomes data. Two sets of outcome measures, caregivers’ quality of life and quality of life of their children with a developmental disability, will be included and Quality-Adjusted Life Years will be estimated Costs will be estimated from the provider’s and the caregiver’s perspective.

  

Impact details

The study is still ongoing. We will update this page with more information about ours and other projects when the data collection is completed and impact has been realised.  

Results and strategies used in the pilot study are already informing research and practice in other geographic contexts. For instance, research teams in the USA are using materials developed in Ethiopia to inform their implementation of the CST among migrant families from Ethiopia and Eritrea.  

References

Abubakar, A., Gona, J. K., Kipkemoi, P., Rimba, K., Amukambwa, D., & Newton, C. R. (2022). Perspectives of key stakeholders on educational experiences of children with autism spectrum disorders at the Kenyan Coast. African Journal of Disability (Online), 11, 1-6. https://doi.org/10.4102/ajod.v11i0.847 

Gona, J. K., Mung'ala‐Odera, V., Newton, C. R., & Hartley, S. (2011). Caring for children with disabilities in Kilifi, Kenya: what is the carer's experience? Child: care, health and development, 37(2), 175-183. https://doi.org/10.1111/j.1365-2214.2010.01124.x 

Tekola, B., Girma, F., Kinfe, M., Abdurahman, R., Tesfaye, M., Yenus, Z., ... & Hoekstra, R. A. (2020). Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia. Autism, 24(1), 51-63. https://doi.org/10.1177/1362361319848532  

Tekola, B., Kinfe, M., Girma, F., Hanlon, C., & Hoekstra, R. A. (2020). Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study. Social Science & Medicine, 256, Article 113034. https://doi.org/10.1016/j.socscimed.2020.113034 

Research

Multimedia

Associates

Melissa Washington-Nortey
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Country

Kenya, Ethiopia

Affiliated organizations

King's College London IoPPN

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