Information School, University of Washington, Seattle, Washington, USA.
Microsoft Research, Redmond, Washington, USA.
J Am Med Inform Assoc. 2022 Jan 29;29(3):481-488. doi: 10.1093/jamia/ocab273.
We explore the telehealth experiences of adults who use augmentative and alternative communication (AAC) and clinicians who work with people using AAC.
We conducted semistructured, online interviews with 6 adults who use AAC and 8 clinicians who provide telehealth services to people who use AAC between July and September 2020. Participants were located in the United States and the United Kingdom. All participants had engaged in 2 or more telehealth visits in the past 6 months. We used an inductive, thematic approach to analyze the interview data.
Our findings reveal that (1) telehealth is an essential service, (2) technology causes barriers, (3) policies meant to protect actually inhibit, and (4) remote monitoring devices have the potential to mitigate risks.
Telehealth systems created for persons without disabilities do not provide equitable access to everyone. Telehealth should be flexible enough to allow patients to use the communication modality that best meets their needs. We suggest that healthcare systems think of the healthcare ecosystem as one which includes a variety of telehealth options in addition to traditional in-person clinical visits.
The benefits of telehealth for people who use AAC are substantial and should be an option for ongoing health care. However, the accessibility of telehealth technologies needs to be improved. Designers should view telehealth as part of a broad healthcare ecosystem, which includes in-person, telehealth, and remote health monitoring technologies. Designers should also include AAC users in the design and development process. Telehealth policies should encourage multimodality access to health care and address funding concerns.
探索使用辅助和替代沟通(AAC)的成年人以及与使用 AAC 的人合作的临床医生的远程医疗体验。
我们于 2020 年 7 月至 9 月期间,对 6 名使用 AAC 的成年人和 8 名向使用 AAC 的人提供远程医疗服务的临床医生进行了半结构式在线访谈。参与者位于美国和英国。所有参与者在过去 6 个月内都进行了 2 次或更多次远程医疗访问。我们使用归纳主题分析方法对访谈数据进行了分析。
我们的研究结果表明:(1)远程医疗是一项必不可少的服务;(2)技术会造成障碍;(3)旨在保护患者的政策实际上会造成阻碍;(4)远程监控设备具有降低风险的潜力。
为非残疾人士设计的远程医疗系统并不能为每个人提供公平的访问机会。远程医疗应足够灵活,以使患者能够使用最能满足其需求的沟通方式。我们建议医疗保健系统将医疗保健生态系统视为除传统的面对面临床访问外,还包括各种远程医疗选择的系统。
远程医疗对使用 AAC 的人具有重要意义,应该成为持续医疗保健的选择。但是,远程医疗技术的可访问性需要得到改善。设计者应将远程医疗视为包括面对面、远程医疗和远程健康监测技术在内的广泛医疗保健生态系统的一部分。设计者还应将 AAC 用户纳入设计和开发过程。远程医疗政策应鼓励多模式获取医疗保健,并解决资金问题。