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Data · dataset · 2025

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.

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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.

Description

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.

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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

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