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

Analysis

We analyzed data using an iterative, inductive approach.³⁶ The first author wrote memos for the interviews and then began developing open codes. The first author engaged in reflexivity during the initial coding process,^28,37 recognizing that their background as an AAC specialist provided them with unique insights. The third author reviewed 2 transcripts, 1 from an AAC user and 1 from a clinician, and developed open codes based on those 2 transcripts. After the initial phases of coding, the first and third authors reconciled their initial open codes to develop a refined set of codes. To ensure that the codes were understandable to researchers unfamiliar with AAC, we shared quote excerpts from both AAC user and clinician participants with a small group of researchers working in medical informatics, who provided input that further refined the existing coding schema. After multiple passes of data review, all 3 authors developed a set of broader themes through consensus, encompassing earlier codes and categories, which are presented in our findings.

Participants

We interviewed 6 adults who used AAC (AAC1–6) who lived in the United States. Participants’ ages ranged between 35 and 64 years. Four participants identified as men, one as a woman, and one chose “other” and did not specify their gender identity. The majority of AAC users had a motor neuron disease, such as ALS. Four participants used eye control for computer access, one participant used a head mouse, and one participant was able to use their hands to access a standard keyboard/mouse and phone app. One participant used their voice to communicate during the interview but used AAC for communication at night. All participants had engaged in telehealth services 2 or more times in the last 6 months. Two participants had caregivers/family members actively engaged and present during their interviews. It is common for AAC users to choose a familiar communication partner to assist with their communication as a part of their “alternative” (AAC) communication strategy. However, the focus of the interview remains on the perceptions of the AAC user rather than the caregiver.^8,30

We interviewed 8 clinicians (C1–8) who provided telehealth services to patients who used AAC. Clinicians include the following professions: physician, nurse, speech-language pathologist, and assistive technology professional. Five clinicians were based in the United States and 3 were based in the United Kingdom. Six clinicians identified as women and 2 identified as men. Participants provided services in a variety of settings and client populations including adult, pediatric, home health, outpatient, nonprofit, and private practice. Clinicians’ ages ranged from 25 to 65 years and their experience in providing telehealth services ranged from <1 year to >6 years. All clinicians reported having 11 or more patients who use AAC on their current panel.

Comfort with technology influences the use of telehealth.^38–40 Survey results indicated that all participants rated themselves as fairly comfortable or very comfortable with familiar technologies. One participant rated themselves as neutral with new technologies, all other participants rated themselves as fairly comfortable or very comfortable with new technologies.

Our analysis revealed results that are specific to people who use AAC as well as more generalized findings that encompass the overall telehealth experience. We discuss our findings within 4 themes: (1) telehealth is an essential service, (2) technology causes barriers, (3) policies meant to protect actually inhibit, and (4) remote monitoring devices have potential to mitigate risks.

Telehealth is an essential service

Across both participant groups, telehealth was cited as having many benefits, including safety for both clinicians and patients, decreased travel time for appointments, and an improvement in scheduling and attending appointments. Some of these benefits were felt both by clinicians and AAC users, such as decreased travel time. C1 explained, “I could do so many more telemedicine visits and reach so many more people in a day…because I have such a large geographical area.” AAC5 and their caregiver explained that telehealth visits saved a great deal of time and fatigue compared to in-person healthcare visits: “[in-person visits] means like three hours of getting everything together…and it’s not very far for us [to travel to the appointment] but it’s still a huge hassle…for the clinic visits [AAC5] refuses to even see all the people he’s like, ‘come on, come on, hurry up’.” Similarly, AAC6 explained that routine health appointments over video telehealth would be preferable to in-person because “appointment days in [clinic’s location] are taxing…it’s always a time crunch getting me ready, packing batteries, lunch, etc.”

Some clinicians noted that they experienced an increase in patient scheduling for telehealth. C7 said, “it actually makes it safer for [AAC user patients] because they’re getting more care and a lot of patients used to decline coming into clinic because it was too big of a deal.” C4 recognized the importance of telehealth as a safe option for health-compromised patients, “What if you have a person who is so medically complex that coming into [clinic] will get them really sick?”

While both clinicians and AAC users recognized that telehealth had barriers as well as benefits, participants viewed telehealth as an essential service, particularly during COVID-19. C8 explained, “we're not putting people at risk and not putting ourselves at risk, but we can still have that contact.” AAC3 and AAC4 noted that they felt having the option to communicate with their providers by text (via email, EHR, or text messaging) instead of voice output was advantageous, particularly based on their communication abilities. AAC4 explained, “keyboard is faster…for a simple question.”

In addition, clinicians talked about how telehealth services can provide quick access for troubleshooting AAC technology problems. Instead of having to schedule an in-person visit, which can take time, telehealth allows assistive technology professionals to quickly meet remotely with AAC users to provide training and support for their AAC equipment.

Technology causes barriers

While our data show a variety of benefits for telehealth, the technologies used for telehealth can also be barriers to healthcare access. Barriers include physical access to the technology and cognitive barriers to using the technology. These barriers can be experienced by the patient, the clinician, or both.

Five of the 6 AAC user participants were unable to physically access a traditional keyboard and mouse. Participants who were unable to use a traditional computer and mouse experienced major barriers to accessing telehealth technologies. Barriers included the inability to independently access EHRs/PHRs, an inability to independently launch video conferencing platforms, and interference from AAC communication software with telehealth systems. For example, AAC6 explained: “My issue is using speakers and microphones simultaneously [on the AAC device]” and that technical difficulties “caused anxiety and frustration.” Similarly, AAC4 stated: “My equipment has quirks. This can make video calls fairly unpredictable.”

AAC users discussed how they had to balance their own technical needs with the needs of their healthcare provider. For example, AAC1 shared that a provider only gave the option of a telephone visit as a telehealth alternative to an in-person visit. Because AAC1 required many minutes to type responses on their communication device, the provider on the phone would repeat their question or ask if the patient was still on the phone when they did not receive an immediate response from AAC1. AAC1 explained, “I would have preferred video [instead of the phone] so I could have answered non-verbally.” The ability to respond to yes/no questions nonverbally would have saved time, patient stress and fatigue, and would have improved the communication interaction during the telehealth visit.

Clinicians, as well as AAC user patients, spend time attempting to overcome technical difficulties with telehealth. For example, some clinicians spoke of the importance for them to view the patient’s speech-generating software on their AAC device. C3 said that they “have trouble with the video panel that shows all the participants getting in the way [of the communication software they need to view and edit].” As a result, the telehealth experience is diminished because of technical barriers to viewing the screen being shared.

Clinicians also recognized that cognitive barriers could be a factor for some AAC user patients, particularly those who have received new AAC equipment. C2 explained, “I do find that introducing this initial technology of even just the speech on the [AAC] device itself is so complicated for some people…then also being like okay, and here's this thing [telehealth technology] and I don't know, it just seems like an extra [burden].”

Unfamiliarity with telehealth systems can result in a high cognitive load for both the patient and the clinician. AAC4 had to manage their communication abilities and technology preferences with their clinician’s technology abilities. For telehealth communication, AAC4 could most effectively communicate nonverbally through video for yes/no questions and use the chat function in video conferencing for more in-depth responses. However, AAC4 stated “[My clinician] always had issues with reading my answers” and as a result, they changed video conferencing platforms to one where the clinician was able to more easily use the chat window to read AAC4’s responses. In this case, AAC4 and their clinician had to adapt to each other’s physical and cognitive barriers with the technology.

Clinicians found that they also needed to adapt their telehealth systems to the needs of their patients who use AAC. Clinicians used a wide variety of telehealth systems with their patients who used AAC. All 8 clinicians used synchronous, live telephone, and video conferencing telehealth visits with patients. Clinicians also used email, messaging through EHR/patient portals, text messaging, Facebook Messenger, What’sApp, and software for remote editing/control of patient’s computers or AAC systems. C5 explained that they adapted their telehealth technology to the needs of their patients to overcome both technical and cognitive barriers: “I found the most effective way to communicate with [AAC users during telehealth]…is to use what they use. So if [patients] are comfortable with…What’sApp then I’d rather that they communicate through What’sApp…it’s the same deal with the video conferencing.”

For clinical appointments, clinicians preferred video-based telehealth services to other telehealth modalities. C2 explained: “[video] is the closest I can get to having an in-person meeting with them…I can read their faces.” However, clinicians noted that they needed to use a variety of strategies to ensure patients were successful in using video-based telehealth by overcoming cognitive barriers. Clinicians created “cheat sheets,” talked through the initial video conference setup with patients on the phone, and even remotely controlled patients’ devices to ensure that patients could successfully “get in” the video conferencing telemedicine visit. As a result, clinicians could spend a great deal of time assisting their clients with technology access in addition to the actual telehealth appointment itself.

Policies meant to protect actually inhibit

While our analysis reveals that clinicians wanted to use tools that were easiest for AAC users to access, the healthcare system itself could significantly impact clinicians’ abilities to accommodate patients’ needs. Clinicians spoke of the delicate balance in managing patient privacy with accessibility, such as when C7 explained that they were able to securely meet clients’ accessibility needs because “I have a work iPhone and a lot of people will…just send me a text message [to the work phone].” Other clinicians spoke of being limited to “secure” tools that were embedded within their healthcare system but were not easily accessible by patients.

C1 explained, “secure messaging and secure access [such as through EHR] isn’t available for someone who isn’t able-bodied.” C1 shared a story of a patient who was unable to access their EHR to message a clinician about a needed prescription change. Because the EHR was physically inaccessible to the patient and policies did not allow the patient to communicate via email (the communication method the patient was able to access independently), the patient had to ask a paid caregiver to communicate with the clinician on their behalf.

AAC2 no longer attempted to access their EHR themselves, explaining that “a lot of that kind of software requires you to be able to hover [with the mouse]” which was not possible with eye control. Instead, AAC2’s caregiver conducted EHR communication on their behalf. While participants recognized that telehealth systems often included encryption, which provided additional security and privacy, the inability of patients to independently access those systems negated the effectiveness of keeping data private.

Even when an EHR is considered accessible and working correctly, built-in privacy and security controls can inhibit access. AAC6 described how “my messages can take… [up to] 60 minutes to compose” using eye control. However, AAC6 explained that their EHR times out after 30 minutes of inactivity so they need to compose and save their message in a different application and switch between applications and the EHR to send a secure message. The extra steps of composing a message in a separate application ultimately increased the total time and effort required for AAC6 to communicate with their clinician independently.

In addition to policy barriers regarding privacy and security, the ability to provide telehealth services is inhibited by a lack of funding, both for services and equipment. C1, C3, and C4 explained that billing codes for patients who use AAC are complicated, because not all treatment and diagnostic procedures are allowable as telehealth services. These billing restrictions can prevent some patients who use AAC from receiving telehealth despite telehealth being a safer alternative to in-person visits. C3, C5, and C8 shared concerns that older patients who use AAC and lower-socioeconomic patients did not have access to the necessary equipment for telehealth services and might not be scheduling needed health appointments as a result.

Remote monitoring devices have potential to mitigate risks

Clinicians and AAC users identified that a serious risk of using telehealth was the risk of missing critical medical information that could not be captured except during in-person visits. C7 explained: “I think the biggest fear is that we’re missing something…if we can’t see the whole person and do the whole physical assessment. That’s why we push pretty hard for video instead of phone.”

AAC1 explained that they felt that wearable monitoring technologies, such as oxygen monitors, could be a solution to improving telehealth services and health services in general: “So if I ever stopped breathing at night. There is not a dead body in the morning.” Both AAC1 and AAC2 expressed concerns related to their health conditions and the need for ongoing monitoring outside of traditional in-person visits. In these instances, the potential for telehealth systems to incorporate monitoring data was seen as an opportunity to address medical needs that are not currently being met through either “traditional” telehealth or in-person care. However, not all participants responded favorably to the idea of using wearable devices for long-term medical data monitoring. Participants were more favorable to the use of remote health monitoring if they had control of when and how the data was collected. AAC3 explained that “temporary sending days [of data]…is no problem, maybe when I’m sick, it would make sense to send it more frequent[ly].”

Limitations and future work

This study targeted a specific patient population, adults who use AAC, the majority of whom also used alternative computer access methods. Therefore, we have a small participant population which is consistent with prior qualitative studies involving people who use AAC.^{8,30,31,33,63} Future work in telehealth could investigate whether designs that are accessible for people who use AAC also meet the needs of broader patient populations. Future work could also investigate the telehealth experiences of AAC users who do not report comfort with technologies.