Participation of children and youth with cerebral palsy in rural Uganda: Activity attendance and involvement compared with peers without cerebral palsy

AIM: To compare participation attendance and involvement of children and youth (C&Y) with and without cerebral palsy (CP) in a low-income area of eastern Uganda.
METHOD: Eighty-two C&Y with CP aged 6–22 years and 81 age- and sex-matched C&Y without CP participated in the study. Data on attendance and involvement in 20 home and community activities were obtained using the instrument "Picture My Participation". Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated.
RESULTS: Pooled attendance across all activities was significantly lower in C&Y with CP than in C&Y without CP (P<0.001) and for each activity item (P=0.004 to P<0.001). Effect sizes for each activity were 0.2–0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the CP group (P<0.001) and for each activity (P=0.014 to P<0.001). Effect sizes for each activity were 0.2–0.5. C&Y at GMFCS level I–II had higher attendance (P<0.001) and involvement (P=0.023) than those at GMFCS III–V.
INTERPRETATION: Participation attendance and involvement of young people living with CP in Uganda were restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them.

Eighty-two children and youth with cerebral palsy aged 6-22 years and 81 age- and sex-matched children and youth without CP participated. Motor function, self-care skills, and social functions were assessed, and caregivers were interviewed on behalf of their children using Picture My Participation (PMP). PMP measures participation in 20 home and community activities, and was developed for use in low and middle-income countries. The instrument consists of four sections measuring attendance, involvement, importance, and facilitators/barriers: https://ju.se/en/research/research-groups/child/projects/picture-my-participation.html
We used the first two sections in this study. The interviews were conducted by a social worker living in the area and familiar with the culture and language.

The dataset consists of three (3) files:
• Data_set_PMP-I_Andrews_et_al.xlsx
• Variable_list_PMP-I_Andrews_et_al.pdf
• Picture_My_Participation_2019.pdf (the survey used)

研究目的：比较乌干达东部低收入地区伴与不伴脑瘫（cerebral palsy，CP）的儿童青少年（children and youth，C&Y）的参与率与参与投入程度。
研究方法：本研究纳入82名6~22岁伴脑瘫的儿童青少年，以及81名年龄、性别匹配的无脑瘫儿童青少年作为对照。采用“我的参与图景（Picture My Participation）”问卷收集20项家庭与社区活动的参与率与参与投入数据。采用非参数统计方法评估组间差异，并计算效应量。
研究结果：汇总所有活动的总参与率在伴脑瘫儿童青少年群体中显著低于无脑瘫群体（P<0.001），且在各项活动条目上均存在显著差异（P=0.004至P<0.001）。各项活动的效应量为0.2~0.7。社区活动的组间差异大于家庭活动。汇总所有活动的总参与投入在脑瘫组中更低（P<0.001），且各项活动均存在显著差异（P=0.014至P<0.001）。各项活动的效应量为0.2~0.5。粗大运动功能分级系统（Gross Motor Function Classification System，GMFCS）分级I~II级的儿童青少年参与率（P<0.001）与参与投入程度（P=0.023）均高于分级III~V级者。
解读：乌干达脑瘫青少年的参与率与参与投入程度受限，尤以社区活动为甚。亟需识别特定场景下的参与障碍，并制定针对性干预策略以克服这些障碍。

本研究共纳入82名6~22岁伴脑瘫的儿童青少年，以及81名年龄、性别匹配的无脑瘫儿童青少年。研究评估了受试者的运动功能、自理能力与社会功能，并由照料者代为填写“我的参与图景（Picture My Participation，PMP）”问卷以完成访谈。PMP问卷用于评估20项家庭与社区活动的参与情况，专为中低收入国家开发，包含四个维度，分别评估参与率、参与投入程度、活动重要性以及促进因素/障碍因素，相关信息可查阅：https://ju.se/en/research/research-groups/child/projects/picture-my-participation.html。本研究仅使用了其中前两个维度。访谈由一名居住于该地区、熟悉当地文化与语言的社会工作者完成。

本数据集包含3个文件：
• Data_set_PMP-I_Andrews_et_al.xlsx
• Variable_list_PMP-I_Andrews_et_al.pdf
• Picture_My_Participation_2019.pdf（本次研究使用的调研工具）