School of Public Health
Ghana - Identifying gaps in screening, coordination, and care management for children with developmental disabilities in Ghana
Many children in Ghana are living with developmental disabilities. It is estimated that 1 in 4 children aged 36-59 months in Ghana have a delay in cognitive, learning, socio-emotional and/or physical delays ; and 1 in 63 (or 1.6%) children aged 15 years or under have a significant developmental disability . Children with developmental delays and disabilities are more likely to have poor health and educational outcomes than those without delays or disabilities [3-4], which may persist into adulthood. Early identification of the conditions is urgently needed in order for services or treatments to be arranged. Early identification not only involves education for care providers but also requires referral and case management being put in place. Currently, there are limited studies in Ghana that have taken a broader look, across different child care professionals and developmental domains, to identify knowledge gaps and systemic challenges in how children with developmental issues are identified, referred and managed. In partnership with the Ghana Health Services, PROMISE Ghana and the Center for Learning and Childhood Development Ghana (CLCD-Ghana), the study aims to identify the knowledge gaps and problems associated with the identification, referral and provision of care in the home, school and hospital settings for children with developmental problems.
A formative assessment will be developed including quantitative and qualitative data collection methods. Specifically, semi-structured in depth interviews will be conducted with 15 child developmental care specialists (pediatricians, psychologists, and special education teachers) to identify challenges in diagnosis, treatment, and referral of children with developmental problems. One hundred surveys will be carried out with non-specialist health workers to assess their knowledge about developmental disabilities (autism spectrum disorder, attention deficit hyperactive disorder, cerebral palsy and learning disabilities) and related social services. Six focus group discussions will be conducted: two with community health workers; two with teachers; and two with primary caregivers of children with a development disability. The discussion will be about how children with developmental problems are identified and supported in the home, community, and school settings. Participants will be drawn from both rural and urban settings. The study is based in Accra, a city located in the coastal part of Ghana with a population over 2 millions, and that 20% children under 5 years of age are not meeting their developmental milestone . This study will inform an intervention to strengthen screening, diagnosis and care management for children with developmental disabilities.
1. Ghana Statistical Service (2011) Ghana Multiple Indicator Cluster Survey with an Enhanced Malaria Module and Biomaker. http://www.statsghana.gov.gh/nada/index.php/catalog/52
2. Biritwum RB, Devres JP, Ofosu-Amaah S, Marfo C, Essah ER (2001) Prevalence of children with disabilities in central region, Ghana. West Afr J Med 20:249-255.
3. Cortiella C (2013) Diplomas at risk: A critical look at the graduation rate of students with learning disabilities. In National Center for Learning Disabilities, New York p1-25.
4. Shonkoff JP, Boyce WT, McEwen BS. Neuroscience, Molecular Biology, and the Childhood Roots of Health DisparitiesBuilding a New Framework for Health Promotion and Disease Prevention. JAMA. 2009;301(21):2252-2259. doi:10.1001/jama.2009.754
Global Health PI/Mentor: Li-Ching Lee
I am very glad to have had the opportunity to conduct research as a Global Health Established Field Placement Awardee in Ghana. The goal of my project was to identify gaps in screening, coordination and care management for children living with development disabilities (CLDDs) in Ghana. While reviewing transcripts from previous interviews with mothers of CLDDs, I learned that developmental delays were highly stigmatized in Ghana. As a result, I decided to produce a documentary to share the stories of mothers of CLDDs in Ghana. The goal of the documentary is to highlight the plight of these mothers, reduce stigma and discrimination and encourage support from community members and other stakeholders. Although I was well aware that production of the documentary in addition to my original research project would be a lot of work, I was extremely excited to carry on the challenge and embark on this new journey.
Upon arrival in Accra, Ghana, I was immediately reminded of my childhood in Lagos, Nigeria. Although both countries shared lots of similarities, I also noticed the various differences that set them apart. It wasn’t long before I reconnected with childhood friends who had moved to Ghana from Nigeria. There is a long history of an unending Jollof Rice war between Nigerians and Ghanaians. Whose Jollof is Better? I finally got a chance to eat Ghanaian Jollof and I arrived at a conclusion that might end this war – “it really depends on the skills of the person who cooks the Jollof”. After a week of settling in, I was finally ready to begin my exciting projects.
The research project was being conducted by the Center for Learning and Childhood Development –Ghana (CLCD). The team consisted of CLCD staff members, me and two undergraduate students from Brown University. We spent the first week participating in orientation activities including cultural training. This was my first time conducting research with a team and it was quite an amazing experience. Even though each member of the team had their individual assignment, we worked closely together to accomplish the goals of the project. I was responsible for conducting in-depth interviews with specialist who provide services to CLDDs. In addition to that, I was working with the local videography team I had hired to recruit participants for the documentary.
Every experience comes with its own challenges. However, I was able to make each challenge a learning experience. One of the most important lessons I learned during this project is that the concept of “Time” carries different meanings for every culture. For instance, if I had a meeting at the Bloomberg School of Public Health at 2:00pm, I would probably arrive at 1:50pm and start the meeting at exactly 2:00pm. In Ghana however, it was not uncommon to have a meeting at “around 2:00pm to 2:30pm going on 3:00pm”. This means that the person you are meeting “should” be available by 2:00pm but something might hold them up till 2:30pm and your meeting might not start until 3:00pm. I experienced this several times while conducting interviews and shooting scenes for the documentary. With this realization, I never scheduled more than one interview per day even though the interviews were only 30 minutes long.
My experience in Ghana gave me the opportunity to evaluate several of my capabilities. I am now very confident in my ability to work as a public health practitioner in a low and middle-income country or low resource setting. I now look forward to disseminating my findings, sharing the documentary and working on new projects in other LMICs. I am very grateful to the Center for Global Health for giving me the opportunity to work in Ghana.