O'Mara Ben, Harrison Matthew, Harley Kirsten, Dwyer Natasha
Department of Media & Communication, Faculty of Health, Arts & Design, Swinburne University, Melbourne, Australia.
Centre for Social Impact, University of New South Wales, Sydney, Australia.
JMIR Rehabil Assist Technol. 2024 Dec 23;11:e58828. doi: 10.2196/58828.
Evidence suggests that individuals with motor neuron disease (MND), a terminal illness, find enjoyment and social connection through video games. However, MND-related barriers can make gaming challenging, exacerbating feelings of boredom, stress, isolation, and loss of control over daily life.
We scoped the evidence to describe relevant research and practice regarding what may help reduce difficulties for people with MND when playing video games.
A scoping review was conducted using the Arksey and O'Malley framework, recent scoping review guidance, and engaging with people with lived experience of MND. Peer-reviewed studies were sourced from PubMed and the Swinburne University of Technology Library. Gray literature was identified from government, not-for-profit, commercial, and community websites. Data were extracted and summarized from the collected literature.
The evidence base, consisting of quantitative and qualitative research, lived experience stories, information resources, reviews, and guidelines, included 85 documents. Only 8 (9%) directly addressed video games and people with MND; however, these studies were limited in depth and quality. The primary technologies examined included customized information and communications technology for communication and control of computing systems (including desktop, laptop, smartphone, tablet, and console systems) and video game software and hardware (including hand controllers and accessibility features, such as difficulty level, speed, and remappable buttons and controls). Common factors in the evidence base highlight barriers and enablers to enjoying video games for people with MND. These include technological, physical, social, and economic challenges. Addressing these requires greater involvement of people with MND in game and technology research and development. Changes to information and communications technology, game software and hardware, policies, and guidelines are needed to better meet their needs.
There is a significant gap in understanding the lived experience of people with MND with video games and what makes playing them easier, including appropriate customization of technology and the social experience of games. This gap perpetuates exclusion from gaming communities and recreation, potentially worsening social isolation. Existing evidence suggesting viable options for future research and practice. Video game and information and communications technology research and development must prioritize qualitative and quantitative research with people with MND at an appropriate scale, with a focus on lived experience, use of improved participant engagement techniques, and user-focused design for more inclusive games. Practical work needs to increase awareness of what can help make games more inclusive, including incorporation of accessibility early in the game production process, early incorporation of accessibility in game production, and affordable options for customized interfaces and other devices to play games.
有证据表明，患有运动神经元病（MND，一种绝症）的个体通过电子游戏获得乐趣并建立社交联系。然而，与MND相关的障碍会使游戏具有挑战性，加剧无聊、压力、孤立感以及对日常生活失去掌控的感觉。
我们梳理了相关证据，以描述关于哪些因素可能有助于减少MND患者玩电子游戏时所遇到困难的相关研究和实践。
采用阿克西和奥马利框架、近期的范围综述指南，并与有MND生活经历的人合作进行了一项范围综述。同行评审研究来自PubMed和斯威本科技大学图书馆。灰色文献从政府、非营利组织、商业和社区网站中识别。从收集到的文献中提取并总结数据。
证据库包括定量和定性研究、生活经历故事、信息资源、综述和指南，共85份文献。只有8份（9%）直接涉及电子游戏与MND患者；然而，这些研究在深度和质量上都有限。所研究的主要技术包括用于通信和控制计算系统（包括台式机、笔记本电脑、智能手机、平板电脑和游戏机系统）的定制信息通信技术以及电子游戏软件和硬件（包括手柄控制器和无障碍功能，如难度级别、速度以及可重新映射的按钮和控制）。证据库中的常见因素突出了MND患者玩电子游戏的障碍和促进因素。这些包括技术、身体、社会和经济方面的挑战。解决这些问题需要MND患者更多地参与游戏和技术研发。需要对信息通信技术、游戏软件和硬件、政策及指南进行变革，以更好地满足他们的需求。
在理解MND患者玩电子游戏的生活经历以及哪些因素能使游戏更易上手方面存在显著差距，包括对技术的适当定制和游戏的社交体验。这种差距使他们被排除在游戏社区和娱乐活动之外的情况长期存在，可能会加剧社会孤立。现有证据为未来的研究和实践提供了可行的选择。电子游戏和信息通信技术的研发必须优先开展适当规模的针对MND患者的定性和定量研究，重点关注生活经历、采用改进的参与者参与技巧以及以用户为中心设计更具包容性的游戏。实际工作需要提高对哪些因素有助于使游戏更具包容性的认识，包括在游戏制作过程早期纳入无障碍功能、为定制界面和其他游戏设备提供经济实惠的选择。
