Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, UNSW Sydney, Sydney, Australia.
Heart Centre for Children, The Sydney Children's Hospitals Network (The Children's Hospital at Westmead and Sydney Children's Hospital, Randwick), Sydney, Australia.
Disabil Rehabil. 2019 Nov;41(23):2750-2757. doi: 10.1080/09638288.2018.1474496. Epub 2018 Jun 18.
To conduct a scoping review of the published evidence on parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder and clinicians' influence on timely wheelchair implementation. Nine electronic databases and reference lists of all retrieved full-text articles were searched up to March 2017. Eligibility criteria included (1) at least one child participant with a neuromuscular disorder, (2) power wheelchair as an intervention, and (3) qualitative, quantitative or mixed methods parent-reported outcomes related to power wheelchair equipment. None of the 67 eligible studies examined parental perceptions of wheelchair prescription as a primary aim, and only 10 studies included children with a neuromuscular disorder. Parents reported their own emotional responses including grief and loss, emphasis on their child's walking and lack of accessibility as key barriers to power wheelchair prescription. Clinicians' perspectives on walking and powered mobility influenced parental decision-making regarding power wheelchair use for their child. Parents' experiences of initial wheelchair prescription have not been explored in existing literature. Clinicians' understanding of the benefits of power wheelchair equipment, particularly in the context of progression of neuromuscular disorders, is critical to facilitating timely wheelchair prescription with children. Condition-specific evidence is urgently needed to inform and support multidisciplinary management of children and their families.Implications for RehabilitationIt is important that rehabilitation professionals recognize parental barriers to initial power wheelchair prescription, such as strong emotional responses, an emphasis on their child's walking and lack of access.Clinicians' perspectives on walking and powered mobility may influence parental decision-making regarding engagement in power wheelchair prescription and rehabilitation.It is critical that clinicians are aware of and actively educate families regarding the benefits of powered mobility to facilitate timely prescription and support physical and psychological adjustment.
对已发表的关于父母对神经肌肉疾病儿童电动轮椅处方的看法以及临床医生对及时实施轮椅的影响的证据进行范围综述。
检索了 9 个电子数据库和所有检索到的全文文章的参考文献列表,截至 2017 年 3 月。纳入标准包括:(1)至少有 1 名患有神经肌肉疾病的儿童参与者;(2)电动轮椅为干预措施;(3)与电动轮椅设备相关的父母报告的定性、定量或混合方法结果。在 67 项合格研究中,没有一项研究将父母对轮椅处方的看法作为主要目的进行研究,只有 10 项研究纳入了患有神经肌肉疾病的儿童。父母报告了自己的情绪反应,包括悲伤和失落、强调孩子的行走能力以及缺乏可达性,这些都是电动轮椅处方的主要障碍。临床医生对行走和电动移动性的看法影响了父母对孩子使用电动轮椅的决策。父母在初始轮椅处方方面的经验尚未在现有文献中得到探讨。临床医生对电动轮椅设备的益处的理解,特别是在神经肌肉疾病进展的背景下,对于促进儿童及时获得轮椅处方至关重要。急需特定于疾病的证据,为儿童及其家庭的多学科管理提供信息和支持。
康复专业人员应认识到父母对初始电动轮椅处方的障碍,例如强烈的情绪反应、对孩子行走能力的重视以及缺乏可达性。临床医生对行走和电动移动性的看法可能会影响父母对参与电动轮椅处方和康复的决策。临床医生必须意识到并积极向家庭宣传电动移动性的益处,以促进及时处方并支持身体和心理调整。