Occupational Therapy Department, Sydney Children's Hospital, Randwick, Australia.
Discipline of Paediatrics and Children's Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, Sydney, Australia.
Disabil Rehabil Assist Technol. 2024 Oct;19(7):2630-2640. doi: 10.1080/17483107.2024.2310282. Epub 2024 Feb 3.
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.
Australian parents of children who had been recommended a wheelchair and clinicians caring for children with NMCs were invited to evaluate the booklet, . 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.
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.
Parents and clinicians rate 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 "" 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.
获取可靠的信息可以促进父母参与为患有神经肌肉疾病（NMC）的孩子开具轮椅处方。在这项研究中，我们开发并评估了一本针对 NMC 患儿父母的心理教育手册的可接受性、感知有用性和情感反应。
邀请澳大利亚有孩子被推荐使用轮椅的父母和照顾 NMC 儿童的临床医生来评估这本手册。手册包括 11 章，每章涵盖轮椅处方和支持性护理的不同方面。参与者完成了一项在线调查，其中包括经过验证的和特定于研究的测量。
27 名家长（71%的回复率，78%为母亲）和 9 名临床医生（90%的回复率，89%为女性）参与了研究。所有家长都认为手册满足了他们的信息和支持需求，93%的家长同意该手册将帮助家长参与轮椅处方过程。所有临床医生都认为手册满足了家长的信息和支持需求，并同意他们可以在临床实践中使用该手册。
家长和临床医生认为该手册可接受，可在为患有神经肌肉疾病的儿童推荐轮椅的背景下使用。下一步包括在临床实践中前瞻性地检查手册的使用情况，并对其进行文化和语言多样化人群的适应性调整。
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。在整个轮椅处方过程中引起的情感反应证明需要综合的心理社会多学科护理，以改善这一人群的获取途径并支持其持续的情感需求。
在孩子零到两岁之间被推荐使用轮椅的家长需要得到临床医生更多关于他们对轮椅处方的想法和感受的支持。
接受轮椅推荐的儿童的家长和治疗临床医生支持为他们提供量身定制的心理教育资源。
