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.
https://doi.org/10.48723/a8yn-zs31
This was a cluster-randomized, controlled, single-blinded study on a cohort of children and young people with Cerebral Palsy (CP) in the Iganga-Mayuge Health and Demographic Surveillance Site. 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.
The Excel sheet includes the data collected before the intervention started (2021; baseline), and after the 11 months intervention ended (2022).
Randomized, controlled, intervention trial.
Baseline data: Sociodemographic information and clinical data including anthropometry, Gross Motor Function Classification System (GMFCS) levels.
The aim of this study was to evaluate the effectiveness of the Akwenda Intervention Program in reducing burden and stress while improving health and well-being of the caregivers. Participants were assigned to an intervention or control group. The Zimbabwe Caregiver Challenges Scale (ZCCS) measured caregiver burden, and the PedsQL Family Impact Module Scales assessed quality of life. Custom-made questionnaires and video protocols evaluated caregiver knowledge and skills.
The dataset contains of the following files:
- Data_Sharing_Akwenda_Caregiver_outcome.xlsx (31.4 kB)
- Documentation_file_data_sharing_Akwenda_caregiver_outcome.docx
Details about the variables in the tables can be found in the documentation file
Documentation files
Documentation files
- Documentation_file_data_sharing_Akwenda_caregiver_outcome.docx17.91 KiB
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:
No
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]
Ethical Review
Ethical Review
Reviewer:
- Other
Registration number:
UNCST, SS-5173
Ethical review information:
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
Opens a new window at ror.org.
ROR
Award number:
2017-05474_VR
Topic and keywords
Topic and keywords
CESSDA topic classification:
Swedish Standard Classification of Research Subjects 2025:
Keywords:
Relations
Relations
Related research data:
Publications
Publications
Citation:
Asige, E., Saloojee, G., Wanjala, G., Andrews, C., Namaganda, L., Kakooza-Mwesige, A., Albus, K., Damiano, D., & Forssberg, H. (2025). Impact of the Akwenda Intervention Program for cerebral palsy on caregiver-perceived burden, stress, and psychosocial functioning: A cluster-randomized trial in Uganda. In DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY. https://doi.org/10.1111/dmcn.16368
DOI:
