Hobson Esther V, Fazal Saima, Shaw Pamela J, McDermott Christopher J
a Sheffield Institute for Translational Neurosciences, University of Sheffield , Sheffield , UK and.
b School of Health and Related Research, University of Sheffield , Sheffield , UK.
Amyotroph Lateral Scler Frontotemporal Degener. 2017 Aug;18(5-6):378-387. doi: 10.1080/21678421.2017.1288253. Epub 2017 Feb 20.
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.
我们的目标是探究运动神经元病患者对数字技术的态度。通过邮寄和在线问卷的方式,对83名运动神经元病患者(pwMND)以及54名患者的朋友和家属(fMND)进行了调查。对5名pwMND和5名fMND进行了半结构化访谈。82%的pwMND和87%的fMND每天都使用技术,其中iPad和笔记本电脑是最常用的设备。pwMND利用技术帮助他们继续参与社交、娱乐和上网等日常活动。互联网提供了有关运动神经元病的同伴支持和信息,但这些信息可能令人痛苦或不可靠。参与者更喜欢来自专业人士和官方组织的信息。参与者普遍支持利用技术获取医疗护理。研究确定了技术方面的障碍,如缺乏数字素养技能和上肢功能障碍,以及潜在的解决方案。更具挑战性的障碍包括语言和认知困难,以及对依赖技术的恐惧。解决本研究中确定的障碍有助于pwMND使用技术。然而,随着医疗服务越来越依赖数字技术,应注意确保那些无法或不愿使用技术的人继续以其他方式满足其需求。