“Anything that makes life’s journey better.” Exploring the use of digital technology by people living with motor neurone disease

Our aim was to explore the attitudes of those living with motor neuron disease towards digital technology. Postal and online questionnaires surveyed 83 people with MND (pwMND) and 54 friends and family members (fMND). Five pwMND and five fMND underwent semi-structured interviews. 82% of pwMND and 87% of fMND use technology every day with iPads and laptops being the devices most commonly used. pwMND used technology to help them continue to participate in everyday activities such as socialising, entertainment and accessing the internet. The internet provided peer support and information about MND but information could be distressing or unreliable. Participants preferred information from professionals and official organisations. Participants were generally supportive of using of technology to access medical care. Barriers to technology, such as lack of digital literacy skills and upper limb dysfunction, and potential solutions were identified. More challenging barriers included language and cognitive difficulties, and the fear of becoming dependent on technology. Addressing the barriers identified in this research could help pwMND access technology. However, as healthcare delivery becomes more reliant on digital technology, care should be taken to ensure that those who are unable or unwilling to use technology continue to have their needs met in alternative ways.

本研究旨在探究运动神经元病（Motor Neuron Disease, MND）患者对数字技术的态度。研究通过邮寄与线上问卷，对83名运动神经元病患者（people with MND，以下简称pwMND）及54名患者亲友（friends and family members，以下简称fMND）开展调查，另有5名pwMND与5名fMND参与半结构化访谈。数据显示，82%的pwMND与87%的fMND每日都会使用数字技术，其中iPad与笔记本电脑为最常用设备。pwMND借助数字技术得以持续参与社交、娱乐及互联网访问等日常活动；互联网可为患者提供同侪支持与运动神经元病相关资讯，但这类资讯可能引发情绪困扰或存在不实之处。受试者更倾向于获取专业人士及官方机构发布的资讯，且总体上支持通过数字技术获取医疗服务。本研究明确了数字技术使用的各类障碍（如数字素养不足、上肢功能障碍）及潜在解决方案，其中更为棘手的障碍包括语言与认知障碍，以及对产生技术依赖的担忧。针对本研究中明确的障碍采取应对措施，可助力pwMND更好地使用数字技术；然而，随着医疗服务愈发依赖数字技术，需格外注意确保无法或不愿使用数字技术的人群，仍能通过其他方式满足其医疗需求。