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 Ph.D. 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 synthesise 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 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 finalised Phase 1 and 2 of the project. As part of Phase 2, the intervention development, a total of 8 site-specific stakeholder workshops have been 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) has been 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.
Phase 3 of Tsegereda's project is now underway, with 64 cognitive interviews with caregivers and health workers having been 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 2023. The sessions lasted 2 and a half days with 10-12 community support workers attending at 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 acceptibility of the intervention. It involved focus group discussions with CSWs, mhGAP-trained officers and caregivers.
A development paper abstract was submitted and presented at the International Society for Autism Research (INSAR) conference in Stockholm, Sweden, in May 2023.
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.