Data for: Impact of the Akwenda Intervention Program for cerebral palsy on caregiver‐perceived burden, stress, and psychosocial functioning: A cluster‐randomized trial in Uganda.
Citation and access
Citation and access
Data access level:
Creator/Principal investigator(s):
Research principal:
Principal's reference number:
- 2017-05474
Data contains personal data:
Yes
Type of personal data:
Data is pseudonymized. Age, sex, GMFMCS level, anthropometric data, socio-economic data.
Code key exists:
Yes
Sensitive personal data:
Yes
Citation:
Language:
Copyright:
Method and outcome
Method and outcome
Unit of analysis:
Population:
A total of 100 children and young people with CP aged 2-23 years were included (52 males) together with their primary caregivers. Most were from a population-based cohort identified in a three-stage screening at the IM-HDSS in 20152 which has been followed and studied in a series of articles.10,13-16 An additional group of 27 children between ages 2-6 years were conveniently sampled to include younger participants and achieve statistical power. CP diagnosis was confirmed by a child neurologist using the European CP surveillance definition.
Time method:
Study design:
- Registry-based randomised controlled trial (R-RCT)
Description of study design:
This was a quasi-randomized, controlled, single-blinded study on a cohort of children and young people with CP and their primary cargivers. It took place in the Iganga-Mayuge Health and Demographic Surveillance Site (IM-HDSS) covering a population of approximately 80,000 inhabitants . The CP cohort was divided in two arms: one receiving the Akwenda Intervention program, and the other serving as control waiting to receive the intervention the following year. Children with seizures in both groups were provided anti-seizure medications. Outcomes were assessed prior to and after the intervention period.
Sampling procedure:
Description of sampling:
Population based study on all children and young people with cerebral palsy aged 2-23 living at the IM-HDSS and their primary caregivers.
Time period(s) investigated:
Variables:
32
Number of individuals/objects:
100
Weighting:
No
Response rate/participation rate:
94%
Description of the response rate/participation rate:
Of the 100 participants enrolled in the trial, 94 completed the study: 48 in the intervention group and 46 in the control group. In the intervention group two participants withdrew while three children in the control group were deceased at follow-up and one child withdrew.
Data format/data structure:
Geographic coverage
Geographic coverage
Geographic location:
Geographic description:
Iganga-Mayuge district, Uganda
Lowest geographic unit:
Municipality
Highest geographic unit:
Municipality
Administrative information
Administrative information
Responsible department/unit:
Department of Women's and Children's Health [K6]
Ethics Review:
Other - UNCST, SS-5173
The study was approved by the Uganda National Council for Science and Technology
Funding
Funding
Funding agency:
- Stiftelsen Sunnerdahls Handikappfond
Award number:
F 9/20
Award title:
An innovative intervention for children with cerebral palsy living in low-resource settings
Funding agency:
- Swedish Research Council
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Award number:
2017-05474_VR
