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Effects of different training methods in tele-exercise on acute performance decrement in adults with disability and wheelchair users. 远程锻炼中的不同训练方法对成年残疾人和轮椅使用者急性表现下降的影响。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-01-02 DOI: 10.1080/17483107.2023.2299720
Frederico Ribeiro Neto, Gustavo Henrique Costa Bezerra, Rafael Xavier Couto de Oliveira, Luis Felipe Castelli Correia de Campos, Rodrigo Rodrigues Gomes Costa

Purpose: Wheelchair users and people with disabilities have limited access to physical exercise due to various factors, including medical follow-up and training facilities. Although tele-exercise guided by experts has become a viable option, there is limited knowledge about the acute performance decrement (APD) resulting from remote training methods. The current cross-sectional study aimed to: (1) assess the APD of muscle resistance strength after three synchronous tele-exercise training methods in wheelchair users and (2) compare the training loads associated with each training method.

Materials and methods: Eighteen male and female wheelchair users who participated in tele-exercise strength practices were recruited. The participants performed a maximum resistance strength test by synchronous tele-assessment (push-up test, PUT) at baseline and immediately after three training methods: high-intensity interval training (HIIT), moderate-intensity continuous training (MICT) and sprint interval training (SIT). The primary outcome was the APD, which was measured by the percentage decrease in the number of repetitions of the PUT immediately after the training methods.

Results: APD was observed for all three training methods, with no significant differences between them (-34.8%, -29.9% and -38.0% for MICT, SIT and HII, respectively), and presented a non-significant correlation with the training loads. HIIT had a significantly higher training load than MICT and SIT.

Conclusions: APD occurred in all training sessions, but did not correlate with training load, indicating that it is not an appropriate metric for comparison. Findings provide insight into APD response and highlight the need to consider multiple metrics when comparing training protocols.

目的:由于医疗跟踪和训练设施等各种因素,轮椅使用者和残疾人参加体育锻炼的机会有限。虽然在专家指导下进行远程锻炼已成为一种可行的选择,但人们对远程训练方法导致的急性表现下降(APD)的了解还很有限。本横断面研究旨在(1) 评估轮椅使用者在三种同步远程锻炼训练方法后肌肉阻力强度的APD;(2) 比较每种训练方法的相关训练负荷:招募了 18 名参加远程力量训练的男女轮椅使用者。参与者在基线和三种训练方法(高强度间歇训练(HIIT)、中等强度持续训练(MICT)和短跑间歇训练(SIT))后立即通过同步远程评估进行了最大阻力力量测试(俯卧撑测试,PUT)。主要结果是APD,其测量方法是在训练方法结束后立即进行的PUT重复次数减少的百分比:所有三种训练方法都观察到了 APD,它们之间没有显著差异(MICT、SIT 和 HII 分别为 -34.8%、-29.9% 和 -38.0%),并且与训练负荷没有显著相关性。HIIT 的训练负荷明显高于 MICT 和 SIT:APD出现在所有训练中,但与训练负荷无关,这表明APD不是一个合适的比较指标。研究结果提供了对 APD 反应的深入了解,并强调了在比较训练方案时考虑多种指标的必要性。
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引用次数: 0
Go Zika Go: feasibility study with modified motorized ride-on cars for the mobility of children with Congenital Zika Syndrome (CZS). 寨卡出发:改装电动乘骑车用于先天性寨卡综合症(CZS)儿童行动的可行性研究。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-01-02 DOI: 10.1080/17483107.2023.2300052
Jean Bendito Felix, Ana Carolina de Campos, Samuel W Logan, Julianne Machado, Karoline Souza Monteiro, Egmar Longo

Purpose: To explore the feasibility of an intervention using modified ride-on cars in terms of acceptability and potential changes in goal attainment, mobility, social function, and participation of children with Congenital Zika Syndrome (CZS).

Materials and methods: A pre- and post-intervention feasibility study was conducted with children with CZS, levels IV and V of the Gross Motor Function Classification System (GMFCS). The intervention consisted of 12 weeks of training (3 times a week for 40 min per session) and 4 weeks of follow-up. The primary outcomes included adherence, satisfaction, and learning in mobility. Secondary outcomes encompassed goal attainment, mobility, social/cognitive function, and participation. Descriptive statistics were performed. To explore potential individual changes with the intervention, Wilcoxon test was used to analyze Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) data and Young Children's Participation and Environment Measure (YC-PEM)/Participation and Environment Measure for Children and Youth (PEM-CY), along with standard error measurements of the PEDI-CAT domains.

Results: Four children participated (median age 4.75 years; two females: three at level V on the GMFCS). Adherence was 75% of the total intervention time, and family members reported being satisfied or very satisfied. Children showed gains in learning the use of the modified ride-on cars and an increase in goal attainment after the intervention. Individual changes were observed in the PEDI-CAT domains (mobility and social/cognitive), but there were no significant changes in participation outcomes.

Conclusions: Children with CZS at GMFCS levels IV and V can learn to use motorized ride-on cars, attainment goals, and experience satisfaction.

目的:从先天性寨卡综合征(CZS)儿童在目标实现、活动能力、社会功能和参与方面的可接受性和潜在变化的角度,探讨使用改装乘骑车进行干预的可行性:对患有先天性寨卡综合症(CZS)、粗大运动功能分类系统(GMFCS)四级和五级的儿童进行了干预前后的可行性研究。干预包括 12 周的训练(每周 3 次,每次 40 分钟)和 4 周的随访。主要结果包括坚持率、满意度和移动能力学习。次要结果包括目标达成度、活动能力、社交/认知功能和参与度。研究人员进行了描述性统计。为了探究干预可能带来的个体变化,研究人员使用Wilcoxon检验来分析儿科残疾评估量表--计算机自适应测试(PEDI-CAT)数据、幼儿参与和环境测量(YC-PEM)/儿童和青少年参与和环境测量(PEM-CY),以及PEDI-CAT各领域的标准误差测量:四名儿童(中位数年龄为 4.75 岁;两名女性:三人处于 GMFCS 五级水平)参加了此次活动。坚持干预的时间占总干预时间的 75%,家庭成员表示满意或非常满意。干预后,儿童在学习使用改装后的乘骑小汽车方面取得了进步,目标达成度也有所提高。在PEDI-CAT领域(活动能力和社交/认知能力)观察到了个体变化,但在参与结果方面没有显著变化:结论:GMFCS IV级和V级的CZS儿童可以学会使用电动乘骑车、实现目标并获得满足感。
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引用次数: 0
Development of a rocking chair for use by children with spinal cord injuries. 开发供脊髓损伤儿童使用的摇椅。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-01-31 DOI: 10.1080/17483107.2024.2310268
Johnathan J George, Andrea L Behrman, Thomas J Roussel

Purpose: Activity-based locomotor training improves intrinsic trunk control in children with spinal cord injury (SCI). To reinforce these improvements, there is a need to develop community integration activities to allow a patient to apply the retrained nervous system at home. One activity that has been explored is rocking in a rocking chair. This paper describes the design, fabrication, and evaluation of a rocking chair for children with SCI.

Materials and methods: The Quality Function Deployment (QFD) design process was used. Fundamental needs and features for the rocking chair were defined in a focus group with experienced therapists, and needs were then rated for importance. A House of Quality (HOQ) matrix was developed to correlate needs with design features, and a prototype design was generated. Virtual motion studies and finite element analysis (FEA) were utilized to assess the design. The chair was fabricated and physical testing was performed, including tipping and static and dynamic load assessments.

Results and conclusions: The needs identified through the QFD process were categorized into (1) safety, (2) therapeutic, (3) practical and aesthetic, and (4) data to track chair use. Features selected to meet these needs include safety stops, padding, straps, a stable base, armrests, adjustable footrest, and sensors to capture rocking data. FEA showed a factor of safety (FOS) > 5. Physical testing confirmed physical integrity, load-bearing capacity, and stability of the prototype glider rocking chair. The prototype provides a safe tool for further investigation of rocking for promotion of trunk muscle activation in children with SCI.

目的:以活动为基础的运动训练可改善脊髓损伤(SCI)儿童的躯干内在控制能力。为了巩固这些改善,有必要开发社区融合活动,让患者在家中应用重新训练的神经系统。在摇椅上摇晃就是一种已经探索过的活动。本文介绍了为 SCI 患儿设计、制作和评估摇椅的情况:采用了质量功能展开(QFD)设计流程。由经验丰富的治疗师组成的焦点小组对摇椅的基本需求和功能进行了定义,然后对需求的重要性进行了评级。为了将需求与设计特点联系起来,我们开发了一个 "质量之家"(HOQ)矩阵,并生成了设计原型。虚拟运动研究和有限元分析(FEA)被用来评估设计。对椅子进行了制造和物理测试,包括倾倒、静态和动态负载评估:通过 QFD 流程确定的需求分为:(1) 安全性;(2) 治疗性;(3) 实用性和美观性;(4) 跟踪椅子使用情况的数据。为满足这些需求而选择的功能包括安全挡板、衬垫、绑带、稳定的底座、扶手、可调节的脚踏板以及用于捕捉摇晃数据的传感器。有限元分析表明安全系数(FOS)大于 5。物理测试证实了滑翔机摇椅原型的物理完整性、承重能力和稳定性。该原型为进一步研究摇椅促进 SCI 儿童躯干肌肉活动提供了一个安全的工具。
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引用次数: 0
Perceptions and experiences of first mobility aid provision for young children with cerebral palsy in the United States: a mixed-methods study. 美国脑瘫幼儿对首次移动辅助设备的看法和体验:一项混合方法研究。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-02-12 DOI: 10.1080/17483107.2023.2301376
Nicole L Zaino, Zahra McKee, Charlotte D Caskey, Katherine M Steele, Heather A Feldner

Purpose: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

目的:本研究旨在确定并了解美国为脑瘫(CP)儿童提供首批移动辅助工具(特别是矫形器、助行器和步态训练器)的过程和影响:我们进行了一项混合方法研究,包括调查和半结构式访谈,访谈对象包括 CP 幼儿的照顾者(10 人)和从事 CP 幼儿工作的临床医生(29 人)。我们对调查问卷进行了内容分析,对访谈进行了归纳编码:结果:我们发现了四个主题:(1)第一种助行器具的影响和使用模式各不相同;(2)护理人员对助行器具的教育和了解各不相同;(3)临床医生的知识、一致性和联系对护理工作的影响;(4)家庭在获得助行器具方面存在许多障碍,而且在所有领域都仍有改进的机会:本研究深入探讨了临床医生和CP幼童照护者在处方、提供、使用第一种助行器具(特别是踝足矫形器和助行器/步态训练器)及其影响方面的生活经验。这项研究不仅让研究人员和临床医生了解了美国处方和提供程序的现状,还为改善程序和助行器具本身提出了建议。这些结果对未来的研究、助行器、设计和第一代助行器的提供过程都有影响。
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引用次数: 0
Correction. 更正。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-05-15 DOI: 10.1080/17483107.2024.2350776
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引用次数: 0
Internet of things (IoT)-based assistive system for patients with spinal muscular atrophy (SMA): a case report. 基于物联网(IoT)的脊髓性肌萎缩症(SMA)患者辅助系统:案例报告。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-01-13 DOI: 10.1080/17483107.2023.2300045
José Varela-Aldás, William Avila-Armijos, Guillermo Palacios-Navarro

Purpose: Assistive technologies based on IoT can contribute to improve quality of living of patients with severe motor difficulties by providing partial or total independence. The aim of this work was to analyse the usability and performance of an assistive system based on the IoT when is evaluated by a child patient with spinal muscular atrophy type 1 (SMA-I).

Materials and methods: The study involved a child with SMA-I and his caregiver. The materials used include an M5Stack Core2 kit, a mobile app, and a smart switch based on the ESP-01S card. The patient sends requests to the caregiver from the app installed on the M5Stack Core2 to a mobile app, and controls smart switches located in the rooms. The system was tested by the participants for a period of 30 days to later evaluate its usability and performance.

Results: The results show that the control function of smart switches is the most used and there is no decrease in interactions over the days for the system in general. In addition, the scores obtained from both usability tests (patient and caregiver) were 87.5% and 90%, respectively. The average performance of the entire system was 93.33%.

Conclusion: The application of assistive technologies based on the IoT allows obtaining a practical solution that improves the development of daily activities in a patient with SMA-I.

目的:基于物联网的辅助技术可以为严重运动障碍患者提供部分或完全的独立性,从而有助于提高他们的生活质量。这项工作旨在分析基于物联网的辅助系统的可用性和性能,并由一名患有脊髓性肌萎缩症 1 型(SMA-I)的儿童患者进行评估:研究涉及一名 SMA-I 儿童及其护理人员。使用的材料包括一个 M5Stack Core2 套件、一个移动应用程序和一个基于 ESP-01S 卡的智能开关。患者通过安装在 M5Stack Core2 上的应用程序向护理人员发送移动应用程序请求,并控制房间内的智能开关。参与者对该系统进行了为期 30 天的测试,随后对其可用性和性能进行了评估:结果表明,智能开关的控制功能是使用率最高的功能,而且该系统的总体互动性并没有随着时间的推移而减少。此外,两次可用性测试(病人和护理人员)的得分率分别为 87.5%和 90%。整个系统的平均性能为 93.33%:应用基于物联网的辅助技术可以获得一个实用的解决方案,改善 SMA-I 患者日常活动的发展。
{"title":"Internet of things (IoT)-based assistive system for patients with spinal muscular atrophy (SMA): a case report.","authors":"José Varela-Aldás, William Avila-Armijos, Guillermo Palacios-Navarro","doi":"10.1080/17483107.2023.2300045","DOIUrl":"10.1080/17483107.2023.2300045","url":null,"abstract":"<p><strong>Purpose: </strong>Assistive technologies based on IoT can contribute to improve quality of living of patients with severe motor difficulties by providing partial or total independence. The aim of this work was to analyse the usability and performance of an assistive system based on the IoT when is evaluated by a child patient with spinal muscular atrophy type 1 (SMA-I).</p><p><strong>Materials and methods: </strong>The study involved a child with SMA-I and his caregiver. The materials used include an M5Stack Core2 kit, a mobile app, and a smart switch based on the ESP-01S card. The patient sends requests to the caregiver from the app installed on the M5Stack Core2 to a mobile app, and controls smart switches located in the rooms. The system was tested by the participants for a period of 30 days to later evaluate its usability and performance.</p><p><strong>Results: </strong>The results show that the control function of smart switches is the most used and there is no decrease in interactions over the days for the system in general. In addition, the scores obtained from both usability tests (patient and caregiver) were 87.5% and 90%, respectively. The average performance of the entire system was 93.33%.</p><p><strong>Conclusion: </strong>The application of assistive technologies based on the IoT allows obtaining a practical solution that improves the development of daily activities in a patient with SMA-I.</p>","PeriodicalId":47806,"journal":{"name":"Disability and Rehabilitation-Assistive Technology","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139467041","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Harnessing the potential of digital health for assistive technology. 发掘数字医疗在辅助技术方面的潜力。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-04-04 DOI: 10.1080/17483107.2024.2338122
Johan Borg, Kylie Shae

Worldwide, one out of every three individuals requires assistive products to enjoy and exercise their human rights. In certain nations, only 3% have access to the assistive products they need. Digital technology, and specifically digital health interventions, stands as a powerful solution to improve access and maximize the benefits for users, their families, service providers, and society. Digital health interventions can enable user engagement, support service planning and monitoring, streamline procurement and stock management, boost service efficiency and coverage, and provide avenues for workforce competency development. By harnessing the potential of digital health, universal access to assistive technology can be accelerated.

在全球范围内,每三个人中就有一人需要辅助产品来享受和行使他们的人权。在某些国家,只有 3% 的人能获得他们需要的辅助产品。数字技术,特别是数字健康干预措施,是一种强大的解决方案,可以改善用户、其家人、服务提供者和社会的使用机会,并使其受益最大化。数字健康干预措施可以促进用户参与,支持服务规划和监测,简化采购和库存管理,提高服务效率和覆盖面,并为劳动力能力发展提供途径。通过利用数字健康的潜力,可以加快辅助技术的普及。
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引用次数: 0
Assistive technology to facilitate children's play: a scoping review. 促进儿童游戏的辅助技术:范围界定综述。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-01-02 DOI: 10.1080/17483107.2023.2298825
Minoo Dabiri Golchin, Jacquie Ripat, Michèle Verdonck

Purpose: Play is a fundamental human right and one of the most important occupations in children's lives. Fewer opportunities exist for children with physical disabilities (CWPD) to play. This study aimed to conduct a scoping review of published peer-reviewed literature on using AT to enable "play-for-the-sake-of-play" by CWPD.

Method: The review was conducted using a widely accepted scoping review methodology. Literature searches were conducted from January 2000 to March 2022 using MEDLINE, Central, CINAHL, ERIC, Scopus, and EMBASE. Pairs of reviewers used an online systematic review system to manage title, abstract, and full-text screening. Excel was used for data extraction and charting. Data was charted based on type of AT, play types according to LUDI definitions, and level of evidence.

Results: The search yielded 5250 papers after the removal of duplicates. Title and abstract screening identified 58 studies for full-text screening. The final sample included 31 papers. Seven types of AT were identified in studies: power mobility, virtual reality, robots, adaptations for upper limb differences, switch-adapted games, augmentative and alternative communication devices, and mobility aids. Twenty-three papers addressed cognitive play, seven addressed social play, and one addressed both cognitive and social play. Most studies used case study, descriptive, or repeated measures designs.

Conclusion: There is limited evidence regarding the use of AT to support play-for-the-sake-of-play in CWPD. Given the importance of play, further research using rigorous methodologies and the development of assistive technology dedicated to promoting play-for-the-sake-of-play is warranted.

目的:游戏是一项基本人权,也是儿童生活中最重要的职业之一。肢体残疾儿童(CWPD)游戏的机会较少。本研究旨在对已发表的关于使用辅助器具让肢体残疾儿童 "为了游戏而游戏 "的同行评审文献进行范围界定:方法:采用广泛接受的范围审查方法进行审查。在 2000 年 1 月至 2022 年 3 月期间,使用 MEDLINE、Central、CINAHL、ERIC、Scopus 和 EMBASE 进行了文献检索。一对审稿人使用在线系统综述系统管理标题、摘要和全文筛选。数据提取和图表制作使用 Excel。数据根据AT的类型、LUDI定义的游戏类型和证据级别制成图表:在去除重复内容后,共检索到 5250 篇论文。标题和摘要筛选确定了 58 篇研究报告供全文筛选。最终样本包括 31 篇论文。在研究中发现了七种类型的辅助器具:电动移动、虚拟现实、机器人、上肢差异适应、开关适应游戏、辅助和替代性交流装置以及移动辅助工具。23 篇论文涉及认知游戏,7 篇涉及社交游戏,1 篇同时涉及认知游戏和社交游戏。大多数研究采用了个案研究、描述性或重复测量设计:结论:关于使用辅助器具支持 CWPD 中为游戏而游戏的证据很有限。鉴于游戏的重要性,有必要使用严格的方法进行进一步研究,并开发专门用于促进为游戏而游戏的辅助技术。
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引用次数: 0
Factors that affect powered wheelchair use for an adult population: a systematic review. 影响成人使用电动轮椅的因素:系统综述。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-01-29 DOI: 10.1080/17483107.2024.2304122
Lucy Fishleigh, Rachel Taylor, Gabrielle Hale, Daniel Sam Bowers

Purpose: The purpose of the review was to explore current factors affecting the use of a powered wheelchair for an adult person a with a disability.

Materials and methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) statement. Information about the characteristics of the studies (type, setting) and perceived barriers and facilitators to powered wheelchair use were extracted using a data extraction sheet. Data synthesis was achieved using narrative synthesis. The quality of the included studies was assessed using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (SQAC) and the CASP checklist (Critical Appraisal Skills Programme), Centre for Evidence-Based Medicine, SIGN (Scottish Intercollegiate Guidelines Network).

Results: Fifteen studies qualified for inclusion in the review. The narrative synthesis produced a conceptual map of reported factors affecting the usability of a powered wheelchair.

Conclusions: This review demonstrates that powered wheelchair use is a multifaceted and multidisciplinary phenomenon that is dependent on numerous interconnected factors including individual adjustment, stakeholder cooperation, societal attitudes, functional performance, and environmental features. Based on the review findings, there are several applied learning outcomes and practical applications to the powered wheelchair prescription and provision.

目的:本综述旨在探讨当前影响成年残疾人使用电动轮椅的因素:本综述遵循《系统综述和元分析首选报告项目》(PRISMA)声明。使用数据提取表提取了有关研究特点(类型、环境)以及电动轮椅使用障碍和促进因素的信息。数据综合采用叙事综合法。纳入研究的质量采用《评估各领域初级研究论文的标准质量评估标准》(SQAC)和苏格兰校际指南网络(SIGN)循证医学中心的CASP检查表(批判性评估技能计划)进行评估:结果:15 项研究符合纳入综述的条件。叙述性综述绘制了影响电动轮椅可用性的报告因素概念图:本综述表明,电动轮椅的使用是一个多方面、多学科的现象,取决于众多相互关联的因素,包括个人适应、利益相关者的合作、社会态度、功能表现和环境特征。根据综述结果,在电动轮椅的处方和供应方面有几项应用学习成果和实际应用。
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引用次数: 0
Getting Wheels: development and evaluation of a psychoeducational resource for parents of children with a neuromuscular condition following recommendation of wheelchair equipment. 获得轮子:在推荐轮椅设备后,为神经肌肉疾病患儿的父母开发和评估心理教育资源。
IF 1.9 4区 医学 Q2 REHABILITATION Pub Date : 2024-10-01 Epub Date: 2024-02-03 DOI: 10.1080/17483107.2024.2310282
Sarah-Grace Paguinto, Nadine A Kasparian, Kate Carroll, Nicole Thomas, Paula Bray, Michelle A Farrar

Purpose: Access to credible information can facilitate parental engagement in wheelchair prescription for their child with a neuromuscular condition (NMC). In this study, we developed and evaluated acceptability, perceived usefulness and emotional responses to a psychoeducational booklet for parents of children with a NMC.

Methods: Australian parents of children who had been recommended a wheelchair and clinicians caring for children with NMCs were invited to evaluate the booklet, Getting Wheels. The booklet included 11 chapters, each covering distinct aspects of wheelchair prescription and supportive care. Participants completed one online survey including validated and study-specific measures.

Results: Twenty-seven parents (71% response rate, 78% mothers) and nine clinicians (90% response rate, 89% women) participated. All parents endorsed the booklet as addressing their information and support needs, and 93% agreed it would help parents engage in the wheelchair prescription process. All clinicians endorsed the booklet as addressing parents' information and support needs and agreed they could use the booklet in clinical practice.

Conclusions: Parents and clinicians rate Getting Wheels as acceptable for use in the context of wheelchair recommendation for children with a neuromuscular condition. Next steps include prospective examination of booklet use in clinical practice and adaptation to culturally and linguistically diverse populations.Implications for rehabilitationThe co-designed "Getting Wheels" booklet provides tailored information for use in the context of wheelchair recommendation for children with a neuromuscular condition.The emotions elicited throughout wheelchair prescription endorse the need for integrated psychosocial multidisciplinary care to improve access and support the ongoing emotional needs of this population.Parents of children who receive wheelchair recommendation between zero and two years require greater support from clinicians regarding their thoughts and feelings about wheelchair prescription.Parents of children with a neuromuscular condition and treating clinicians support provision of a tailored psychoeducational resource when a child is recommended a wheelchair.

目的:获得可信的信息有助于家长参与为患有神经肌肉疾病(NMC)的儿童开具轮椅处方。在这项研究中,我们为神经肌肉疾病患儿的家长编写了心理教育手册,并对手册的可接受性、感知有用性和情绪反应进行了评估:方法:我们邀请了被推荐使用轮椅的澳大利亚儿童家长和护理 NMC 儿童的临床医生对小册子《Getting Wheels》进行评估。这本小册子包括 11 个章节,每个章节都涵盖了轮椅处方和支持性护理的不同方面。参与者填写了一份在线调查问卷,其中包括经过验证和研究特定的测量方法:27名家长(回复率71%,78%为母亲)和9名临床医生(回复率90%,89%为女性)参与了调查。所有家长都认为这本小册子满足了他们对信息和支持的需求,93%的家长认为这本小册子有助于家长参与轮椅处方过程。所有临床医生都认为这本小册子满足了家长的信息和支持需求,并同意在临床实践中使用这本小册子:结论:家长和临床医生都认为《获得轮椅》可用于为患有神经肌肉疾病的儿童推荐轮椅。下一步工作包括对手册在临床实践中的使用情况进行前瞻性检查,并根据不同文化和语言的人群进行调整。对康复的启示共同设计的 "获得轮子 "手册为神经肌肉疾病患儿的轮椅推荐提供了量身定制的信息。零到两岁之间接受轮椅推荐的儿童的家长需要临床医生在他们对轮椅处方的想法和感受方面提供更多支持。神经肌肉疾病儿童的家长和治疗临床医生支持在推荐儿童使用轮椅时提供量身定制的心理教育资源。
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引用次数: 0
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Disability and Rehabilitation-Assistive Technology
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