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探索GMFCS IV级脑瘫儿童家庭使用定位和移动辅助技术的成长阶段差异:家长的见解与挑战

Exploring Growth-Stage Variations in Home Use of Positioning and Mobility Assistive Technology for Children with GMFCS IV Cerebral Palsy: Parental Insights and Challenges.

作者信息

Cheng Hsin-Yi Kathy, Hu Shun-Yin, Ju Yan-Ying, Yu Yu-Chun

机构信息

Graduate Institute of Early Intervention, College of Medicine, Chang Gung University, Taoyuan 333, Taiwan.

Department of Physical Medicine and Rehabilitation, Chang Gung Memorial Hospital, Taoyuan 333, Taiwan.

出版信息

Bioengineering (Basel). 2025 Feb 26;12(3):241. doi: 10.3390/bioengineering12030241.

Abstract

This study examines how the use of postural and mobility devices evolves in home environments for children with GMFCS IV cerebral palsy, focusing on parents' perspectives on benefits, outcomes, and challenges. As children grow, changes in muscle strength, motor function, and daily activity demands necessitate adjustments in assistive devices to maintain mobility and postural support. Data from 10 parents, collected through descriptive statistics and qualitative interviews, covered device types, usage patterns, and family impacts across developmental stages from preschool to adulthood. Device needs shift significantly with growth, transitioning from early gait trainers and postural support devices to advanced mobility devices, such as power wheelchairs, which become essential in adulthood. Parents reported positive outcomes, including improved emotional well-being, social participation, and independent mobility, alongside reduced caregiving burdens. However, challenges persist, including financial constraints, frequent device replacements, and limited training for users and caregivers. These insights highlight the need for more adaptable device designs and enhanced family-centered support programs to better assist caregivers in managing device transitions. This study addresses a gap by exploring the real-world outcomes of home-based device use, providing data and parental insights to inform device design, clinical practices, and family-centered support programs. Future research should focus on enhancing device functionality, customization, and accessibility to improve quality of life and promote greater independence for individuals with cerebral palsy.

摘要

本研究探讨了GMFCS IV级脑瘫儿童在家中使用姿势和移动设备的情况如何演变,重点关注家长对其益处、效果和挑战的看法。随着儿童成长,肌肉力量、运动功能和日常活动需求的变化使得辅助设备需要进行调整,以维持移动能力和姿势支撑。通过描述性统计和定性访谈收集的10位家长的数据,涵盖了从学龄前到成年各发育阶段的设备类型、使用模式和家庭影响。随着成长,设备需求显著变化,从早期的步态训练器和姿势支撑设备过渡到先进的移动设备,如电动轮椅,电动轮椅在成年期变得至关重要。家长报告了积极的效果,包括情绪幸福感改善、社会参与度提高和独立移动能力增强,同时护理负担减轻。然而,挑战依然存在,包括经济限制、设备频繁更换以及用户和护理人员培训有限。这些见解凸显了需要更具适应性的设备设计和强化以家庭为中心的支持项目,以更好地帮助护理人员应对设备转换。本研究通过探索家庭设备使用的实际效果填补了空白,提供了数据和家长见解,为设备设计、临床实践和以家庭为中心的支持项目提供参考。未来的研究应专注于增强设备功能、定制性和可及性,以提高脑瘫患者的生活质量并促进其更大程度的独立。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1719/11939245/a50dfa22ddd7/bioengineering-12-00241-g001.jpg

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