Functional development in children and youth with cerebral palsy in Uganda
Citation and access
Citation and access
Data access level:
Creator/Principal investigator(s):
Research principal:
Data contains personal data:
Yes
Code key exists:
Yes
Sensitive personal data:
Yes
Citation:
Language:
Method and outcome
Method and outcome
Unit of analysis:
Population:
A population-based cohort of children with Cerebral Palsy in a geographically defined area in Eastern Uganda
Study design:
- Observational study
Sampling procedure:
Time period(s) investigated:
Variables:
35
Number of individuals/objects:
81
Data collection - Measurements and tests
Data collection - Measurements and tests
Mode of collection:
Measurements and tests
Time period(s) for data collection:
2015-04 - 2019-12
Source of the data:
- Research data
- Population group
Geographic coverage
Geographic coverage
Geographic location:
Geographic description:
Iganga/Mayuge Health and Demographic Surveillance Site, Uganda
Administrative information
Administrative information
Responsible department/unit:
Department of Women's and Children's Health [K6]
Contributor(s):
Ethics Review:
Other - HS1787 & HS2608
Funding
Funding
Funding agency:
- Swedish Research Council
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Award number:
2013-06578_VR
Award title:
Cerebral Palsy in Uganda: Epidemiology, risk factors and intervention
Funding information:
The long term goal of this multidisciplinary project is to develop a Community Based Rehabilitation Program for Cerebral Palsy (CP) in Uganda. Neurodevelopmental disorders have previously been neglected due to more challenging health problems, e.g., under 5 mortality. However, CP is a common cause of movement disability and it has a devastating impact on the child and its family affecting occupational activities, social relationships, psychological well-being and financial conditions. We plan to perform a randomized controlled study comparing clusters of villages with the community based program to villages maintaining the ordinary health services. However, before commencing the intervention we need to understand the panorama of CP in Uganda. There is little information available about the epidemiology of CP in Sub-Saharan Africa. We are currently studying a hospital cohort at Mulago University Hospital in Kampala, but there are obvious limitations. Therefore, we plan to perform a population-based epidemiology study on CP at the Iganga DSS, in which we will explore the prevalence, type of CP, severity level, associated risk factors as well as available rehabilitative and therapeutic services. The subsequent intervention study will be performed on this cohort of children. The information and the results from this project will be useful for advocacy purposes and aiding policy makers allocate adequate resources for children with neurodevelopmental disabilities.
Funding agency:
- Swedish Research Council
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Award number:
2017-05474_VR
Award title:
Developmental disabilities in Uganda: Early detection and intervention
Funding information:
Developmental delay and disability (DDD) affect more than 100 million children worldwide; the majority living in low income settings and often failing to receive even basic education or health care. Recent findings in developmental neuroscience highlight the importance of an enriched, supportive and healthy environment in the first years of life for achieving one’s developmental potential; with children with DDD at high risk for poor outcomes. This project aims to make these children “visible” and to examine the extent to which they are excluded from participation in family and community activities, and to implement and evaluate intervention strategies addressing their unmet health and developmental needs. We will expand our collaborative studies with a Health and Demographic Surveillance System in Uganda by first exploring the epidemiology of all types of DDD in children ages 1-9 years using a three-stage screening process. Next, we will train a team of community and health workers for a controlled early intervention study on these children in collaboration with UNICEF. In addition, we will perform a 3-year longitudinal follow up of our previously identified cohort of children with cerebral palsy and design, execute and evaluate goal directed interventions. Critical knowledge gaps in global outcomes for children with DDD will be addressed through this project and successful interventions will be scaled up and disseminated to other nations by the UNICEF collaboration.
