The efficacy of appropriate paper-based technology for Kenyan children with cerebral palsy

Appropriate paper-based technology (APT) is used to provide postural support for children with cerebral palsy (CP) in low-resourced settings. This pilot study aimed to evaluate the impact of APT on the children’s and families’ lives. A convenience sample of children with CP and their families participated. Inclusion was based on the Gross Motor Function Classification System levels IV and V. APT seating or standing frames were provided for six months. A mixed methods impact of APT devices on the children and families included the Family Impact Assistive Technology Scale for Adaptive Seating (FIATS-AS); the Child Engagement in Daily Life (CEDL) questionnaire; and a qualitative assessment from diary/log and semi-structured interviews. Ten children (median 3 years, range 9 months to 7 years). Baseline to follow-up median (IQR) FIATS-AS were: 22.7 (9.3) and 30.3 (10.2), respectively (<i>p</i>=.002). Similarly mean (SD) CEDL scores for “frequency” changed from 30.5 (13.2) to 42.08 (5.96) (<i>p</i>=.021) and children’s enjoyment scores from 2.23 (0.93) to 2.91 (0.79) (<i>p</i>=.019). CEDL questionnaire for self-care was not discriminatory; seven families scored zero at both baseline and 6 months. Qualitative interviews revealed three key findings; that APT improved functional ability, involvement/interaction in daily-life situations, and a reduced family burden of care. APT devices used in Kenyan children with non-ambulant CP had a meaningful positive effect on both the children’s and their families’ lives.Implications for rehabilitationAssistive devices are often unobtainable for children with cerebral palsy (CP) in low-income countries.APT is a low cost and sustainable solution to make seating and standing devices for disabled children in Kenya.The regular use of a postural support device enhanced the children’s motor skills, ability to function and participate in everyday activities, reduced the burden of care for the families and promoted the children’s social interaction.The postural support devices were highly valued and utilised by the children and families in this study. Assistive devices are often unobtainable for children with cerebral palsy (CP) in low-income countries. APT is a low cost and sustainable solution to make seating and standing devices for disabled children in Kenya. The regular use of a postural support device enhanced the children’s motor skills, ability to function and participate in everyday activities, reduced the burden of care for the families and promoted the children’s social interaction. The postural support devices were highly valued and utilised by the children and families in this study.

适配性纸基技术（Appropriate Paper-based Technology，APT）被用于为资源匮乏地区的脑性瘫痪（Cerebral Palsy，CP）儿童提供姿势支持。本先导性研究旨在评估APT对患儿及其家庭生活的影响。研究采用便利抽样法招募脑性瘫痪患儿及其家庭参与，入组标准为粗大运动功能分级系统（Gross Motor Function Classification System，GMFCS）IV级与V级患儿。研究为受试者提供为期六个月的坐姿或站姿姿势支撑装置。本研究采用混合研究方法评估APT装置对患儿及家庭的影响，评估工具包括《自适应座椅家庭辅助技术影响量表（Family Impact Assistive Technology Scale for Adaptive Seating，FIATS-AS）》、《儿童日常生活参与度问卷（Child Engagement in Daily Life，CEDL）》，以及通过日记/日志与半结构化访谈开展的质性评估。本研究共纳入10名患儿（年龄中位数为3岁，范围为9个月至7岁）。基线至随访阶段的FIATS-AS得分中位数（四分位距）分别为22.7（9.3）与30.3（10.2）（p=0.002）。类似地，CEDL问卷中“频率”维度的平均（标准差）得分从30.5（13.2）提升至42.08（5.96）（p=0.021），患儿愉悦感得分从2.23（0.93）提升至2.91（0.79）（p=0.019）。CEDL问卷中自我护理维度未体现区分度，7个家庭在基线与6个月随访时的得分均为0。质性访谈揭示了三项核心发现：APT可提升患儿的功能能力、改善其在日常生活场景中的参与度与互动情况，并降低家庭的照护负担。在肯尼亚非行走型脑性瘫痪患儿中使用的APT装置，对患儿及其家庭的生活均产生了具有实际意义的积极影响。

### 康复应用启示
低收入国家的脑性瘫痪儿童往往难以获取辅助器具。APT是一种低成本且可持续的解决方案，可为肯尼亚的残疾儿童制作坐姿与站姿支撑装置。定期使用姿势支撑装置可提升患儿的运动技能、功能能力与日常活动参与度，减轻家庭照护负担，并促进患儿的社会互动。本研究中，姿势支撑装置受到患儿与家庭的高度认可与使用。
低收入国家的脑性瘫痪儿童往往难以获取辅助器具。APT是一种低成本且可持续的解决方案，可为肯尼亚的残疾儿童制作坐姿与站姿支撑装置。定期使用姿势支撑装置可提升患儿的运动技能、功能能力与日常活动参与度，减轻家庭照护负担，并促进患儿的社会互动。本研究中，姿势支撑装置受到患儿与家庭的高度认可与使用。