Occupational Therapy Department, Sydney Children's Hospital, Randwick, NSW, Australia.
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, UNSW Sydney, Sydney, NSW, Australia.
Disabil Rehabil. 2020 Dec;42(24):3457-3466. doi: 10.1080/09638288.2019.1595749. Epub 2019 Apr 21.
Standards of care for neuromuscular disorders recommend timely provision of wheelchair equipment to support independent and spontaneous movement, age-appropriate participation, and psychological, social, cognitive and communication skills. Parental engagement is crucial to initiating wheelchair prescription. No studies have investigated parents' perceptions of this process or their experiences of their child's transition to wheelchair equipment. Seventeen families of children with a neuromuscular disorder who were recommended wheelchair equipment participated in an interview (response rate: 53%). Diagnoses included muscular dystrophies, spinal muscular atrophy, and congenital myopathy. Findings showed that wheelchair prescription represented a milestone for parents in their child's disease progression. Parents described experiencing strong emotional responses, with the potential to eclipse pragmatic factors. Perceiving wheelchair equipment as an adjunct to their child's functioning and participation positively influenced parents' receptivity to wheelchair recommendation. Parents' receptivity to wheelchair recommendation was also influenced by their emotional experience, their child's weight-bearing ability and participation in age appropriate activities. Enablers to parental engagement in the wheelchair prescription process included timely psychological care and social support, a child- and family-centered approach to care, and ease of access to credible information. This study shows wheelchair prescription is a complex and multi-faceted process that represents more than just a piece of equipment to parents.Implications for rehabilitationParents experience a range of emotions and challenges as their child's neuromuscular condition progresses, including the introduction of a wheelchair.Anticipatory care and education from health professionals is required to support families' transition to wheelchair equipment.Facilitators to parents' engagement in wheelchair prescription include a family-centered approach, collaborative decision-making between families and health professionals, and access to information and psychosocial support.
神经肌肉疾病护理标准建议及时提供轮椅设备，以支持独立和自发的运动、适合年龄的参与以及心理、社会、认知和沟通技能。家长的参与对于启动轮椅处方至关重要。目前还没有研究调查过家长对这一过程的看法，也没有研究过他们孩子从轮椅设备过渡的经验。17 名推荐使用轮椅设备的神经肌肉疾病儿童的家长参与了访谈（回应率：53%）。诊断包括肌肉营养不良、脊髓性肌萎缩症和先天性肌病。研究结果表明，轮椅处方代表了家长在孩子疾病进展中的一个里程碑。家长们描述了自己经历了强烈的情绪反应，这些情绪反应有可能掩盖了实际因素。家长们将轮椅设备视为孩子功能和参与的辅助工具，这对他们接受轮椅推荐产生了积极影响。家长接受轮椅推荐的意愿还受到他们的情绪体验、孩子的承重能力和参与适合年龄的活动的影响。促进家长参与轮椅处方过程的因素包括及时的心理关怀和社会支持、以孩子和家庭为中心的护理方法，以及易于获取可靠信息。这项研究表明，轮椅处方是一个复杂的、多方面的过程，对家长来说不仅仅是一件设备。
康复的意义
随着孩子的神经肌肉状况的发展，家长们会经历一系列的情绪和挑战，包括引入轮椅。
卫生专业人员需要提供预期护理和教育，以支持家庭向轮椅设备过渡。
促进家长参与轮椅处方的因素包括以家庭为中心的方法、家庭和卫生专业人员之间的协作决策，以及获取信息和心理社会支持。
