Participation of children and youth with cerebral palsy in rural Uganda: Activity attendance and involvement compared with peers without cerebral palsy
Documentation files
Documentation files
Citation and access
Citation and access
Data access level:
Creator/Principal investigator(s):
Research principal:
Data contains personal data:
Yes
Type of personal data:
Pseudonymised health data
Code key exists:
Yes
Sensitive personal data:
Yes
Citation:
Language:
Method and outcome
Method and outcome
Unit of analysis:
Population:
Eighty-two children and youth with cerebral palsy aged 6–22 years, and 81 age- and sex-matched children and youth without cerebral palsy.
Study design:
- Observational study
Description of study design:
A population-based cross-sectional study of children and youth with and without cerebral palsy.
Sampling procedure:
Description of sampling:
The participants were 82 children with cerebral palsy identified in a three-stage population-based screening in 2015 of all children living in a specific geographic area in eastern Uganda, as well as 81 age and sex-matched peers without cerebral palsy living in the same area.
Time period(s) investigated:
Variables:
46
Number of individuals/objects:
163
Response rate/participation rate:
100%
Description of the response rate/participation rate:
All children identified with cerebral palsy were possible to follow up and were willing to participate in the study
Data collection - Interview
Data collection - Interview
Mode of collection:
Interview
Time period(s) for data collection:
2019-05-03 - 2019-12-20
Data collector:
- Makerere University
Sample size:
163
Number of responses:
163
Source of the data:
- Population group
Sample
Sample
Name:
Description of sample:
82 children and youth with cerebral palsy were classified using Gross Motor Function Classification System and and their caregivers were interviewed on behalf of their children using Picture My Participation
Name:
Description of sample:
Caregivers of 81 children and youth without cerebral palsy were interviewed on behalf of their children using Picture My Participation
Instrument
Instrument
Name:
Gross Motor Function Classification System
Description of the instrument:
The Gross Motor Function Classification System is used to classify gross motor function such as sitting, standing, crawling and walking and the need for assistive devices and assistance.
Name:
Picture my Participation
Description of the instrument:
PMP measures participation in 20 home and community activities, and was developed for use in low and middle-income countries. It consists of four sections measuring attendance, involvement, importance, and facilitators/barriers.
Geographic coverage
Geographic coverage
Geographic location:
Geographic description:
This study was performed in the Iganga Mayuge Health and Demographic Surveillance System, which includes more than 80,000 inhabitants in 65 villages in rural eastern Uganda.
Lowest geographic unit:
Parish
Highest geographic unit:
Town district
Administrative information
Administrative information
Responsible department/unit:
Department of Women's and Children's Health [K6]
Ethics Review:
Other - HS 1734
Higher Degrees Research and Ethics Committee of the School of Public Health, College of Health Sciences, Makerere University, and the Uganda National Council for Science and Technology
Funding
Funding
Funding agency:
- Stiftelsen Frimurare Barnhuset
Funding agency:
- Folke Bernadotte Foundation
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Funding agency:
- Stiftelsen Sunnerdahls Handikappfond
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Funding agency:
- Promobilia Foundation
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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.
Funding agency:
- Sällskapet Barnavård
