Perceptions and experiences of first mobility aid provision for young children with cerebral palsy in the United States: a mixed-methods study

The purpose of this study was to establish and understand the provision process and impacts of first mobility aids for children with cerebral palsy (CP) in the United States – specifically orthoses, walkers and gait-trainers.
We performed a mixed-methods study including surveys and semi-structured interviews of caregivers of young children with CP (n = 10) and clinicians who work with young children with CP (n = 29). We used content analysis for the surveys and inductive coding for the interviews.
Four themes emerged: (1) first mobility aids have mixed impacts and use patterns, (2) there is varied caregiver education and understanding about mobility aids, (3) clinician knowledge, consistency and connection impact care and (4) numerous access barriers exist for families, and there are still opportunities for improvement across all domains.
This research provides insights into the lived experiences of clinicians and caregivers of young children with CP regarding the prescription, provision, use and impact of first mobility aids, specifically ankle foot orthoses and walkers/gait trainers. This study not only provides researchers and clinicians with an understanding of the current status of the prescription and provision process in the United States, but also offers suggestions for improvements of the process and mobility aids themselves. These results have implications for future research, mobility aid, design and the provision process of first mobility aids.
More detailed education and training during the prescription and early use process of first mobility aids has been highlighted as an unmet need by many families.
The current timeline for participants receiving first mobility aids after prescription such as ankle-foot orthoses and walkers ranges from 2 to 9 months, which may delay access to on-time mobility for young children.
Clinicians and caregivers highlight benefits of ankle-foot orthoses such as improved gait and standing alignment but also point out these aids can be uncomfortable and inhibit functional floor mobility. Clinicians highlight benefits of walkers such as supporting upright mobility and independence, but also point out challenges with physical barriers in the community and contributions to poor postural habits. Open discussion of these pros and cons with caregivers may be an important part of the provision process.
Understanding the impact of different types and levels of clinician education and training regarding first mobility aids on confidence and decision-making during provision processes is valuable to improve practice and device design.

本研究旨在确立并阐明美国脑瘫（Cerebral Palsy, CP）儿童首批移动辅助器具的供给流程及其影响，具体涵盖矫形器、助行器（walkers）与步态训练器（gait-trainers）。
本研究采用混合方法研究（mixed-methods study）设计，对10名脑瘫儿童照护者与29名从事脑瘫儿童诊疗工作的临床医师开展问卷调查与半结构化访谈；其中，问卷数据采用内容分析法进行处理，访谈数据则采用归纳编码法开展分析。
研究共提炼出四大核心主题：其一，首批移动辅助器具的使用模式与影响兼具两面性；其二，照护者对移动辅助器具的认知水平与配套教育普及程度参差不齐；其三，临床医师的专业知识储备、操作一致性与医患联结水平会对诊疗服务产生显著影响；其四，家庭在获取辅助器具过程中面临诸多准入障碍，且全流程各环节仍存在优化空间。
本研究深入剖析了美国脑瘫儿童照护者与临床医师，在首批移动辅助器具——具体为踝足矫形器（ankle-foot orthoses）、助行器/步态训练器——的开具、供给、使用及影响方面的真实实践体验。本研究不仅为研究者与临床医师厘清了美国当前移动辅助器具开具与供给流程的现状，还为该流程及移动辅助器具本身的优化提供了改进方向。上述研究结果对未来相关研究、移动辅助器具设计以及首批移动辅助器具的供给流程均具有重要借鉴意义。
不少家庭指出，在首批移动辅助器具的开具及早期使用阶段，提供更细致的教育与培训是一项尚未被满足的核心需求。
当前，受试者在开具踝足矫形器、助行器等首批移动辅助器具后，获取器具的周期为2至9个月，这一现状可能会延迟脑瘫儿童及时获得适配移动辅助器具的机会。
临床医师与照护者均提到，踝足矫形器可有效改善步态与站立姿态，但这类器具也可能引发不适感，并限制儿童在地面的功能性移动。临床医师还指出，助行器可支持儿童实现直立移动与活动独立性，但也存在社区物理环境障碍带来的使用挑战，且可能导致儿童养成不良姿势习惯。与照护者就这类利弊展开公开讨论，或许是辅助器具供给流程中的重要环节。
探究针对首批移动辅助器具的不同类型与层级的临床医师教育培训，对其在供给流程中的决策信心与决策质量的影响，对优化临床实践与器具设计具有重要价值。