Tsegereda Haile Kifle
- Jan 24, 2024
- 5 min read
Development and pilot evaluation of a complex intervention to facilitate community-based identification and engagement with care for children with developmental disabilities in Ethiopia and Kenya
The aim of this mixed-methods PhD project is to develop a community-based intervention to promote early identification and engagement in care of children with developmental disabilities in rural and urban communities in Ethiopia and Kenya.
Background
Despite early identification and intervention for children with Developmental Disabilities (DD) being given priority by the World Health Organization (WHO), most children with DD in sub-Saharan Africa are never formally identified and diagnosed.
Early identification and engagement with appropriate care and support services is critical in the care of children with DD. The key informant method is a type of proactive case finding, whereby trusted community members (such as community health workers or volunteers) with relevant training perform case finding by conducting home-to-home visits and community mobilization.
The current project aims to develop an intervention that will help increase community-based identification and engagement with care of children with DD in two low-middle-income countries. The project will be carried out across four study sites, urban Addis Ababa and rural Gurage zone, Ethiopia and urban Nairobi County and rural Kilifi Kenya.
This project constitutes the first phase of the SPARK Project, aiming to increase community-based identification of children with developmental disability and their caregivers including referral pathways to confirm assessment as well as include caregivers in the larger RCT of the WHO caregiver skills training program.
Project Phases
The project has four distinct phases, each with a specific objective.
Phase 1 - The team will synthesize existing evidence on the effectiveness of interventions to increase community-based identification of children with developmental disabilities in low and middle-income countries (LMICs).
Phase 2 - The team aims to to develop an intervention to increase community-based detection and engagement in care of children with DD in Ethiopia and Kenya.
Phase 3 - The community-based intervention’s acceptability, feasibility and potential utility will be assessed through a small-scale pilot study.
Phase 4 - Finally, an evaluation will be carried out to assess the effectiveness, acceptability, and feasibility of the newly developed community-based intervention for detection and engagement with care for children with DD in Ethiopia and Kenya.
Progress
Tsegereda and her team have now finalised phase 1, 2, and 3 of the project. As part of Phase 2, the intervention development, a total of 8 site-specific stakeholder workshops were conducted in the urban and rural settings of both study sites (Ethiopia and Kenya). Stakeholder consultation workshops are listed below with images from each meeting. The main objective of these workshops was to understand the needs and priorities of the local community.
Informed by community consultation workshops and relevant theories, a draft Community Identification of Developmental Disabilities tool (CIDD) was prepared. The draft tool includes two short stories depicting symptoms of a child with delayed development complemented with pictorial illustrations and a simplified decision tree to help determine whether the child should be referred for further assessment. In addition, there is a referral slip attached to the tool for families who are assessed to have a child with probable DD and who agreed take up the referral. The tool will be administered by community support workers.
During Phase 3 of Tsegereda's project, 64 cognitive interviews with caregivers and health workers were conducted across the four sites in Kenya and Ethiopia to assess the understandability of the CIDD tool administration and referral procedures. Pilot training sessions for community support workers (CSWs) were held in March and April of 2023. The sessions lasted 2 and a half days, with 10-12 community support workers attending each site. Then, the pilot CIDD tool was administered from April to June. Each CSW identified 3 to 4 children in their respective communities and referred them to healthcare centres for an mhGAP assessment. A qualitative evaluation of collected pilot data was carried out in June, assessing the feasibility and acceptability of the intervention. It involved focus group discussions with CSWs, mhGAP-trained officers and caregivers.
Phase 3 of Tsegereda’s project, the initial pilot administration, lasted from April to June of 2023 and is complete. Further analysis of implementation data indicated that community support workers (CSWs) engaged more extensively with communities than initially anticipated, identifying and referring a broader range of children with developmental concerns beyond the minimum expected during training.
Building on the initial qualitative evaluation conducted in June of 2023 as part of phase 3, a more in-depth mixed-methods assessment of the pilot phase was undertaken to examine the feasibility, acceptability, and functioning of the CIDD identification and referral pathway in practice. This included Focus Group Discussions (FGDs) with CSWs, FGDs with mhGAP-trained primary healthcare workers and In-Depth Interviews (IDIs) with caregivers who received the CIDD intervention.
Insights from the pilot phase highlighted key strengths of the approach, including the role of caregiver recognition of developmental concerns, trust in community-based workers, and the importance of clear referral pathways within primary healthcare systems. These insights informed a series of intensive, in-person Stakeholder consultation workshops and CIDD Committee meetings and led to refinements in:
The structure and delivery of the CIDD tool
Training content and facilitation approaches
Referral communication and follow-up procedures
Supporting implementation materials and resource kits
These changes ensured that the intervention was optimised for delivery during the full-scale implementation and better aligned with local health system realities across sites.
Tsegereda is currently working on phase 4 of her PhD project. Full-Scale Implementation, quantitative evaluations of the community-based intervention have been finalised, and a qualitative evaluation is still ongoing. The CIDD intervention was implemented at scale across urban and rural sites in Ethiopia and Kenya, after refinements informed by the pilot study, workshops and committee meetings had been made. During this full-scale phase, Community Support Workers (CSWs) identified children aged 2–9 years with suspected developmental concerns through routine community interactions and administered the CIDD approach. Children identified as positive were referred through a structured care pathway involving mhGAP-trained primary healthcare providers, with clinical specialist verification conducted in Ethiopia.
Quantitative evaluations of this community-based intervention have shown promising results in terms of implementation outcomes and diagnostic performance. Alongside the quantitative evaluation, a qualitative component is being conducted to further examine implementation processes and contextual influences in Ethiopia, including caregiver in-depth interviews (IDIs) , mhGAP provider focus group discussions (FGDs) and CSW FGDs. Using framework analysis, this work is exploring key implementation dimensions, including acceptability, feasibility, appropriateness, and the functioning of the referral pathway within routine health system contexts. Tsegereda is also leading this qualitative component in collaboration with the SPARK team.
A development paper abstract was submitted and presented at the International Society for Autism Research (INSAR) conference in Stockholm, Sweden, in May 2023.
Tsegereda also delivered a poster presentation demonstrating full-scale quantitative findings at the International Society for Autism Research (INSAR) conference in Seattle, Washington, in April 2025.
Stakeholder Consultation Workshop - Addis Ababa, Ethiopia, February 2022
Stakeholder Consultation Workshop - Gurage Zone, Ethiopia, March 2022
Community Advisory Board - Addis Ababa, Ethiopia, May 2022
Community Consultation Workshop - Kenya, May 2022
Community Support Worker training - Gurage Zone, Ethiopia, March 2023
Community Support Worker training - Addis Ababa, Ethiopia, April 2023
INSAR Presentation - Stockholm, Sweden, May 2023
About Tsegereda
Tsegereda has completed a Doctor of Medicine at Addis Ababa University as well as a speciality training in Psychiatry. She is currently working as an Assistant Professor of Psychiatry at AAU while completing her PhD research. After completing her specialisation training, Tsegereda established a child psychiatry outpatient service at the Amanuel Mental Specialised Hospital in Ethiopia. Her research interests are neurodevelopmental disorders and intervention development in low- and middle-income settings.
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