Asige Elizabeth, Saloojee Gillian, Wanjala Godfrey, Andrews Carin, Namaganda Lukia H, Kakooza-Mwesige Angelina, Albus Katherine, Damiano Diane L, Forssberg Hans
Department of Pediatrics and Child Health, Makerere University, Kampala, Uganda.
CURIE Study Consortium, Iganga-Mayuge Health and Demographic Surveillance System, Iganga, Uganda.
Dev Med Child Neurol. 2025 Sep;67(9):1206-1216. doi: 10.1111/dmcn.16368. Epub 2025 Jun 14.
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.
评估阿昆达干预项目在减轻乌干达农村地区脑瘫患儿照料者的主观负担、压力以及改善其心理社会和家庭功能方面的效果，及其与儿童结局的关系。
这是一项整群随机对照单盲研究，将100名脑瘫儿童和青少年（2至23岁；48名女性）的照料者分为干预组或对照组。使用津巴布韦照料者挑战量表（ZCCS）测量照料者负担，同时使用儿童生活质量量表（PedsQL）家庭影响模块评估照料者的心理社会和家庭功能。定制问卷和视频协议评估照料者的知识和技能。数据采用t检验和皮尔逊等级相关系数进行分析。
干预组的ZCCS评分降低（p < 0.001），而对照组升高，导致两组间差异较大（p < 0.001；科恩d值 = -3.2）。干预组的PedsQL总分（p < 0.001；科恩d值 = 0.56）、健康相关生活质量评分（科恩d值 = 1.15）以及对脑瘫的知识增加更多。更多的知识与较低的ZCCS评分和改善的健康相关生活质量相关。照料者结局的改善与儿童功能、活动和参与的改善相关。
阿昆达干预项目有效减轻了照料者的负担和压力，改善了心理社会功能。对脑瘫知识的增加、同伴支持和耻辱感的降低促成了这些改善。
