Impact of the Akwenda Intervention Program for cerebral palsy on caregiver-perceived burden, stress, and psychosocial...

To evaluate the effectiveness of the Akwenda Intervention Program in reducing subjective burden, stress, and the psychosocial and family functioning of caregivers of children with cerebral palsy (CP) in rural Uganda, and its relationship to child outcomes.

This was a cluster-randomized, controlled, single-blind study of 100 caregivers of children and young people with CP (aged 2-23 years; 48 females) assigned to an intervention or control group. The Zimbabwe Caregiver Challenges Scale (ZCCS) was used to measure caregiver burden, while the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module was used to assess caregiver psychosocial and family functioning. Customized questionnaires and video protocols evaluated caregiver knowledge and skills. Data were analysed using t-tests and Pearson's rank correlation coefficients.

The ZCCS score decreased in the intervention group (p < 0.001) but increased in the control group, resulting in a large group difference (p < 0.001; Cohen's d = -3.2). The PedsQL total score (p < 0.001; Cohen's d = 0.56) and the health-related quality of life (Cohen's d = 1.15) score and knowledge of CP increased more in the intervention group. Greater knowledge correlated with reduced ZCCS scores and improved health-related quality of life. The improvement in caregiver outcomes correlated with improved child functioning, activity, and participation.

The Akwenda Intervention Program effectively reduced caregiver burden and stress, and improved psychosocial functioning. Improved knowledge of CP, peer support, and stigma reduction contributed to these improvements.