Telehealth experiences of providers and patients who use augmentative and alternative communication

• Published in: Journal of the American Medical Informatics Association : JAMIA Vol. 29; no. 3; pp. 481 - 488
• Main Authors: Beneteau, Erin, Paradiso, Ann, Pratt, Wanda
• Format: Journal Article
• Language: English
• Published: England Oxford University Press 29.01.2022
• Subjects: Adult; Communication; Delivery of Health Care; Disabled Persons; Ecosystem; Humans; Research and Applications; Telemedicine; United States; United States; telemedicine; assistive technology; motor neuron disease; telehealth; eye tracking
• ISSN: 1067-5027; 1527-974X
• DOI: 10.1093/jamia/ocab273

Abstract Objective We explore the telehealth experiences of adults who use augmentative and alternative communication (AAC) and clinicians who work with people using AAC. Materials and Methods 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. Results 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. Discussion 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. Conclusions 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.