Challenges and Facilitators to Telehealth Occupational Therapy for Autistic Children During COVID-19

Abstract

Pre-pandemic, telehealth occupational therapy (OT) for autistic children appeared promising, but research was limited. The pandemic provided a unique opportunity to investigate how clinics transitioned to telehealth. The purpose of this study was to examine barriers and facilitators that influenced delivery of OT services through telehealth for autistic children during the pandemic. We conducted semi-structured qualitative interviews with 13 participants (three administrators, six OTs, and four parents of autistic children) at three Los Angeles area clinics over a 7-month period. We used narrative and thematic analysis to identify four themes. We identified (a) Challenges and (b) Facilitators to Conducting Telehealth OT, including practical strategies for successful facilitation, and (c) Negative and (d) Positive Outcomes of Conducting Telehealth OT. As telehealth will likely remain a viable means of OT service delivery in the future, our findings provide insight into ways that it can be improved and sustained.

Introduction

Before the onset of the COVID-19 pandemic, evidence-based research about pediatric telehealth occupational therapy (OT), although limited, was promising. Burgeoning literature identified telehealth as a feasible and effective mode of service delivery with the potential to increase access for underserved groups (Ashburner et al., 2016; Zylstra, 2013). Furthermore, families of autistic children reported high satisfaction, praising the convenience, enhanced collaboration, and increased parental self-efficacy (Little, Pope, et al., 2018; Little, Wallisch, et al., 2018). However, such evidence of the effectiveness and feasibility of telehealth OT was primarily situated as a time-limited program or supplement to clinic-based therapy used to promote carryover (Ashburner et al., 2016; Gibbs & Toth-Cohen, 2011) and is not directly applicable to the emergency circumstances of the pandemic that took residence in 2020.

During the onset of the COVID-19 pandemic, pediatric OT clinics made an abrupt and widespread shift to telehealth (Little et al., 2021; Proffitt et al., 2021). Research conducted since then points to the benefit of the natural environment, where home-based occupations naturally occur (Camden & Silva, 2021; Wittmeier et al., 2022). This body of work also shows that parents and providers perceived telehealth OT as effective and satisfactory (Camden & Silva, 2021; Dahl-Popolizio et al., 2020; Proffitt et al., 2021). Pediatric OTs noted barriers, such as the initial learning curve, the inability for “hands on” assessment (Wittmeier et al., 2022), technological difficulties, a lack of available materials, and challenges collaborating with caregivers (Abbott-Gaffney et al., 2022). These barriers, unsurprisingly, were significantly negatively correlated with clinicians’ self-confidence in their ability to successfully conduct OT through telehealth.

Despite this emerging work, however, to build a more robust body of work around telehealth OT for autistic children, there remains a need to gain a more detailed understanding of the barriers and facilitators to telehealth OT, and understanding of how families experience it (Proffitt et al., 2021). To address this gap, the overarching purpose of this qualitative study was to understand the transition to telehealth OT during the pandemic. To do so, our research aim was to examine the barriers and facilitators of conducting OT telehealth services for autistic children, from the perspectives of clinic administrators, OTs, and caregivers.

Method

Design

We conducted a qualitative cross-sectional study to understand the barriers and facilitators to telehealth OT for autistic children. The University of Southern California Institutional Review Board (IRB) approved this study. Our research question was as follows:

• Research Question (RQ1): What were the participant-identified barriers and facilitators to conducting and/or participating in telehealth OT services during the pandemic?

Recruitment

We used purposive sampling to recruit three Los Angeles area pediatric clinics. First, we contacted five clinics that use a range of therapeutic frameworks. The first three to agree to participate were included in the study. These clinics used either Ayres Sensory Integration® (Ayres, 1972), the Early Start Denver Model (ESDM; Rogers, 2016), or the Developmental, Individual-differences, and Relationship-based (DIR®)/Floortime™ (Greenspan & Wieder, 2008). The inclusion criteria were as follows: (a) An administrator, OT, or parent of an autistic child at the participating clinic; (b) age 18 years or older; and (c) fluent in English. Clinic administrators emailed flyers to eligible OTs and caregivers, and prospective participants contacted the study team. All participants gave written consent using an IRB-approved online platform.

Participants and Data Collection

We used a Health Insurance Portability and Accountability Act (HIPAA)-compliant Zoom platform to conduct semi-structured interviews with 13 participants (three administrators, six OTs, and four caregivers; see Table 1) lasting 45 to 90 min each. Our interview guides used a narrative approach (see supplemental material). Each participant received an e-gift card. Audio-recorded interviews (totaling 13 hr 44 min) were transcribed verbatim for analysis, using pseudonyms for all identifiable information.

Table 1.

Participants’ Clinic Affiliations and Roles; and Clinicians’ Years of Practice.

Clinic affiliation	Parent	Administrator a	Occupational therapist	Years of practice b	Total n (by clinic)
	n	n	n	M (range)
Clinic 1	1	1	4	10.1 (2–19)	6
Clinic 2	3	1	1	5.8 (2.5–9)	5
Clinic 3	0	1	1	15.5 (6–25)	2
Total n (by role)	4	3	6		13

^aAll administrators were also registered occupational therapists; two spoke directly in interviews about their experiences treating clients during the pandemic. ^bYears of practice includes occupational therapists and administrators.

Data Analysis

We used a narrative analytic approach, keeping stories intact (Reissman, 1993), and we used Braun and Clarke’s (2006) thematic analysis, specifically (a) a theoretical thematic approach (coding for a specific research question), (b) at the semantic level (not looking beyond explicit or surface meanings), and (c) from an essentialist-realist epistemic tradition (theorizing experience and meaning in a straightforward way). First, two authors read six transcripts (one from each study site) to develop an initial codebook. Five authors then coded the data corpus using NVivo 12; each transcript was coded by two authors. The study team met throughout the coding process to discuss and refine the codebook. We initially had seven facilitators and six challenges; through the iterative analytic process, we determined that some of these were actually outcomes. We grouped these into overarching themes (challenges and facilitators, negative and positive outcomes), with subthemes specifying specific types or levels. Two authors, both OT clinic administrators who experienced the telehealth transition, contributed to the analytic process and critically revised the manuscript, enhancing credibility and confirmability (Letts et al., 2007).

Results

Our analysis yielded four overarching themes: (a) Challenges and (b) Facilitators to Conducting Telehealth OT, and (c) Negative and (d) Positive Outcomes of Conducting Telehealth OT (see Figure 1). We also noted specific strategies that OTs used to facilitate telehealth sessions. These strategies, largely woven throughout the following data excerpts, are also listed in Table 2 for ease. We describe the themes, with data excerpts, below.

Figure 1.

Study Findings: Overarching Themes and Subthemes.

Note. OT = occupational therapy.

Table 2.

Summary of Participant-Reported Strategies for Promoting Successful Telehealth OT Sessions.

Staff trainings on telehealth OT

Share official statements and research on telehealth

Teach technology basics of telehealth (i.e., how to join session, set up camera)

Incorporate videos of parent coaching in telehealth session

Resources for families and staff

Survey family’s home environment, keep list of materials that families have readily available

Provide copies of telehealth protocols and OT resources (i.e., sensory regulation strategies) through mail or email

Create short videos modeling interventions

Mail simple session resources (i.e., arts and crafts materials, laminated picture cards)

Create database of telehealth activity ideas in a Google Doc accessible to OTs and parents

Follow OT social media for activity ideas

Create an ergonomically supportive telehealth environment

Develop Q&A template by clinic for policy and telehealth logistical questions

Send session plans to caregivers ahead of time

Create phone number for professional use (i.e., Google Voice)

Follow up with families through email to summarize session, provide resources

Establish boundaries for communication outside of session

Translate resources and session plans prior to sessions, as needed

Interventions and in-session strategies

Set up room and activities beforehand in collaboration with parent

Incorporate sensory regulation activities (i.e., deep pressure, vestibular input)

Integrate therapy with ADLs/routines (i.e., feeding during regular mealtimes)

Encourage regular breaks and movement, turn off video/audio as needed

Incorporate technology and videos into sessions:   Parent uses Bluetooth headset, therapist turns off camera to reduce auditory and visual stimulation   Use Zoom whiteboard feature for visual motor tasks or drawing breaks   Use YouTube videos for kid-friendly yoga or breathing exercises   Use PowerPoint for social stories

Use visual supports   Schedule on whiteboard or use share screen feature with pictures, reward/token system, timers

Silence phone/messaging notifications during session to avoid distractions

Provide synchronous and asynchronous tasks

Parent education and coaching

Modify coaching based on individual learning style of parent

Start slow and ease parents in to parent coaching, work in parents’ comfort zone

Check in with parents mental/emotional state and regulation

Communicate and narrate in easily understandable language

Reduce stress of multitasking by encouraging caregivers to prioritize their interaction with child

Model with visuals   Video of therapist doing handling techniques with doll

Record parent–child interactions during session, then review and reflect with parent

Increase communication outside of session to meet parents’ needs

Note. OT = occupational therapy; ADL = activities of daily living.

Challenges to Conducting Telehealth OT

We categorized the challenges to conducting telehealth OT into subthemes: (a) Administrative, (b) Personal and Interpersonal, (c) Therapy Environment, and (d) Clinic Culture.

Administrative

Administrators at all three clinics remembered feeling immense stress when Los Angeles issued lockdown orders in March of 2020. Lucy (Clinic 3 administrator/OT) described the uncertainty of the emergency circumstances and the pressure to maintain the safety of staff and families without interrupting services:

Administration-wise, we were glued to CDC website . . . We weren’t sleeping because we were like, “What’s the next update? . . . How can we not interrupt services for these families? How do we keep everyone safe?” We were constantly trying to, in this really stressful situation, be the calm in the storm.

With pressure from funding agencies, all clinics took a “leap of faith” with telehealth. They scrambled to make changes to documentation practices, find affordable and HIPAA-compliant platforms, troubleshoot technology, and rearrange therapy schedules.

Personal and Interpersonal

Most participants lacked telehealth experience, and their uncertainty initially served as a barrier. Lucy (Clinic 3 administrator/OT) said her staff “were feeling very unsure of themselves. Seasoned therapists who’ve been treating for years and years. It was a whole new realm, and they were feeling very disoriented.” Alexis (Clinic 1 caregiver), despite highly praising her son’s OT’s coaching skills, still felt nervous about being observed:

It was exhausting. Feeling like you’re being watched all the time makes you feel a little criticized . . . It’s not [the OT’s] fault. They’re saying it nicely, but you start to take a lot of that constructive criticism to heart. I really struggled for a while, just feeling like, “Oh, my gosh, I’m a terrible mother, I’m terrible at doing this.”

Some autistic children experienced significant challenges due to their regulatory needs and learning styles. Zoe (Clinic 2 caregiver) said, “The first two, three months when we started telehealth, it was really hard for us. He can’t sit still.” Jenna (Clinic 1 OT) also noted the impact of parental regulation: “If parents’ regulation was off, that’s going to impact our therapy sessions. If [they] are having a really overwhelming day, they may not be as present or ready to engage.”

As telehealth, by necessity, shifted to parent-led therapy, many OTs faced interpersonal-related challenges such as struggling to convey their clinical reasoning to parents in easily digestible language. Lisa (Clinic 2 OT) noted that OTs have “a million thoughts going through our heads when we’re working with a kid,” making it difficult to succinctly explain to parents what to do. Lucy (Clinic 2 administrator/OT) described this challenge:

I want them to feel like parents, not like therapists. And not feel like they should know everything I’ve gone through school to learn. At the beginning there were lots of questions, “Am I doing it right?” . . . And disappointment if I asked them to do something and their child couldn’t. . . I didn’t have the right language sometimes, because in therapy we just do with our hands, it’s just instinctual. To actually say it out loud is a very cognitive process.

Isabella (Clinic 1 OT) also described challenges with rapport building:

Establishing rapport takes a lot more conscious effort . . . Things need to be more straightforward, instead of us just being able to pick those things up from [each other’s] body language. There are times I have to be more direct . . . Then I feel like, “Oh my gosh, I would never do that in person.”

Therapy Environment

As clinics closed their doors, clinicians and parents faced challenges adapting to the home as the new therapeutic environment, as effective OT required adaptations and use of materials that clients had available. The home environment presented distractions, as Fernando (Clinic 2 caregiver) described: “My wife [is] a journalist, and the mayor would give a press conference every day, so that was always on in the background. So, we would try to reduce the noise in the apartment, but sometimes that was hard.”

Several OTs also described how the new therapeutic environment affected their ability to make clinical observations, modify the environment, model tasks, and support parents. Miriam (Clinic 1 OT) explained the challenge of being “limited to nonphysical ways of helping”:

Missing out on the physical use of your body . . . is one of the hardest things. Working virtually, it’s hard when you see something that your therapist gut says, “Ooh. That’s about to not go well.” If I were there, I would just quietly go over and put the cap on the blender before he pushes the button, right? When you’re stuck in a screen, you’re just sitting there like, “I can’t do anything! I want to help!” Sometimes being an extra physical presence . . . to move that thing out of reach, or to just put a hand on the parent’s back to reassure them, “You’ve got this. I’m here.” I think that’s really required the biggest shift in how I do my work, trying to find ways to compensate for the lack of the physical options.

Clinic Culture

Although all three clinics highly valued parent education, pre-pandemic parental involvement varied across the clinics. Clinic 1 was most accustomed to parent coaching during in-person sessions; clinics with less pre-pandemic parent coaching experience required a more drastic shift. Lisa (Clinic 2 OT) expressed concern about her limited coaching experience:

[Administrators] were like, “It’s going to be primarily parent coaching.” And I just didn’t have experience with that. I work with the parents a little bit, but not in the way that you’re supposed to with telepractice. So I was really nervous about it.

Conversely, Jenna (Clinic 1 OT) said, “We were already coaching families in sessions, whereas [other clinicians I know] had to [learn] the best method to provide coaching.”

Clinics also faced unique challenges based on how readily their therapy approach translated to telehealth. Those using Ayres’ Sensory Integration®, for example, faced more challenges translating it because the approach utilizes specialized equipment. Hanna (Clinic 3 OT) said, “It was hard to do specifically [sensory integration] because there’s not a clinic.”

The emergency transition to telehealth presented administrative challenges, personal fears and interpersonal differences, environmental limitations, and a shift to parent coaching that challenged each site in unique ways, based on their clinic culture and therapy framework.

Facilitators to Conducting Telehealth OT

The facilitators to conducting telehealth OT are organized into subthemes: (a) Administrative, (b) Interpersonal, (c) Family Resources, and (d) Clinic Culture.

Administrative

All clinics provided staff training at the outset of the transition. Emily (Clinic 2 administrator) described the presentations they gave, with official telehealth statements from governing boards, summaries of research evidence, and video examples of parent coaching. She also described how, when funders allowed, they creatively maximized authorized billable hours:

With telehealth, you can support asynchronously or synchronously. If a family is saying, “I want the services, but I cannot be on the screen,” the therapist [can provide] additional resources, activity ideas, create videos . . . We became more creative in how . . . to make it a supportive and viable service for [families].

Support from funders also facilitated the transition to telehealth. Sophie (Clinic 1 administrator/OT) said, “Our funding sources were encouraging it. I think [they] were really concerned about clients . . . They wanted to make sure that the clients were getting their needs met.” Zoe (Clinic 2 caregiver) said, “We were lucky to have a good insurance company that did not stop the services. They found ways for these services to continue.” Other administrative supports included mentorship, education, encouragement, and checking in regularly on the well-being of staff members. Jenna (Clinic 1 OT) said that her supervisors were “so mindful and supportive . . . Checking in and [asking] how we’re feeling, what challenges we might be having.”

Interpersonal

Participants emphasized the importance of open communication for effective and satisfactory telehealth OT. Parents and OTs communicated often by text and email to check in, share materials, and discuss session plans. Zoe (Clinic 2 caregiver) explained, “The therapist is not just teaching my kid, I’m also learning from it . . . The real key is having a good therapist that communicates with you and actually listens to your concerns.” Similarly, Fernando (Clinic 2 caregiver) said, “I’m not trying to tell the therapist what to do . . . But I make suggestions [because] I know my son, I know what he likes, what he doesn’t like, what things motivate him.”

By creating strong partnerships and building skills in articulating clinical reasoning to parents, therapists used parent coaching to facilitate the telehealth experience. Gabriela (Clinic 1 OT) discovered that, despite having parent coaching competence, she continued to hone her skills. She gave an example of a feeding client with a history of aspiration, where safety was paramount:

She’s sitting in her highchair and I’m across from her, so when she’s drinking I can’t really see the fine movements in her throat. I would have to ask Dad—I wouldn’t say, like, “Is her hyoid bone moving?” [I’d say,] “Can you see a little bit of movement here [points to neck]? Do you hear her voice quality? Is it still clear or is kind of cough-y, gurgle-y?” I have to be much more specific, whereas in person I would just be watching for that, not necessarily saying it out loud. So, it’s getting them involved a little bit more in those types of observations.

Emotionally supportive relationships were another important facilitator to telehealth, especially in the stress of the pandemic. For Alexis (Clinic 1 caregiver), this was significant:

I think that the coaching helped, because . . . we’ve learned how to play with [our son] and understand him. It’s so important to have a good therapist who’s comfortable with coaching [and] with those awkward moments. If you’re open and honest . . . and you’re willing to take what they have to say, you can learn a lot [and] really bond with your kid. It can create a lot of beautiful things between you and your child that I don’t think we would have gotten if we were in clinic.

Therapist–parent support was also important to Fernando (Clinic 2 caregiver), who said of his son’s OT, “I feel like she was our therapist in a way, too. She would always ask how we were doing, which she totally didn’t have to do . . . So I appreciated that.” Many OTs recognized the value of vulnerability and trust for conducting telehealth in the midst of the shared pandemic experience, as Jenna (Clinic 1 OT) described, “Families let us into their homes. It placed [them] in a vulnerable place because we’re seeing their space. At the beginning, that was hard for [them], like, ‘Please don’t mind the mess.’ But over time [it was] like, ‘We’re [in] this together.’”

Family Resources

Telehealth OT changed parents’ roles in therapy and some participants felt telehealth was possible largely due to families’ accommodating schedules. Fernando (Clinic 2 caregiver) said, “My wife and I have been very lucky. We had jobs that let us work at home that were very flexible if needed to be.” In addition to schedules, OTs also learned to make use of families’ resources, such as materials in the home, to facilitate sessions. Jenna (Clinic 1 OT) and Lucy (Clinic 3 administrator/OT) asked parents to show them items in their homes through video chat, which required reassurance that whatever families had was fine. Lucy said,

I started like, “Take me through your house.” Literally, I’m like, “Let’s go in your kitchen, what can we find? Do you mind just carrying me? Turn me this way, turn me that way.” I [would] explain to them, “I’d love to be able to use things that you have. We don’t have to have anything fancy, this will be great [for your child].”

Clinic Culture

Participants who used parent coaching pre-pandemic described their comfort with this modality. Miriam (Clinic 1 OT) noted that her clinic generally prioritized therapists taking a “clinically significant but socially more of a backseat role.” Alexis (Clinic 1 parent) echoed Miriam’s sentiment: “They’re all very parent coaching–oriented . . . I feel like that was a strength in our case because a lot of our therapists already feel comfortable coaching.”

Another facilitator was scaling back clinical goals, focusing instead on the foundations of co-regulation and play, as Sophie (Clinic 1 administrator/OT) encouraged her staff: “I leaned super heavy into basic regulation and shared attention. Being present and [focusing] on [shared experiences], [following] the child’s lead . . . We tried to stay really true to that model.” She explained that the clinic administrators recognized that their staff and families were in a state of emergency; life had suddenly changed, and clients would likely experience a different trajectory toward therapeutic goals. She believed that focusing on regulation, while clinicians and families became accustomed to telehealth, was as important as other clinical goals.

Participants from all sites noted the benefits of a clinic culture that encouraged resource sharing as they all adjusted to a new delivery model. Lucy (Clinic 3 administrator/OT) praised her staff’s collaboration: “I can’t say enough about how great it is to have a team of people who want to share their knowledge with each other.” In sum, helpful facilitators to conducting telehealth OT were staff trainings and support, strengthening parent coaching skills, utilizing family resources, and leaning into the strengths of each site’s therapy framework and culture.

Negative Outcomes of Conducting Telehealth OT

Participants described negative outcomes of telehealth OT, which we categorized as (a) Financial, (b) Risk of Burnout, and (c) Child Developmental Outcomes.

Financial

All administrators described an initial drop in billable hours. Sophie (Clinic 1 administrator/OT) said their drop was primarily from self-pay families. Hannah (Clinic 3 OT) reported that many families paused therapy for several months until insurance providers required resuming therapy to maintain services. Emily (Clinic 2 administrator) noted an initial significant drop in referrals: “People were afraid to go to the doctor, and in pediatrics, referrals for therapy typically come through seeing your pediatrician. But because that first step wasn’t happening, there was a significant drop in referrals for us.”

Risk of Burnout

The OTs and parents from all three clinics reported varying degrees of exhaustion and overwhelm while conducting telehealth OT during the pandemic. Parents detailed the stress of managing schedules and the increased demand for parent participation. Zoe (Clinic 2 caregiver) described how her son’s telehealth required her full attention: “I’m paying [the therapists], but I feel like I’m the one working. And it’s stressful, too, because I’m like, ‘Oh my God, I can’t do anything [else] because I have to sit there with him.’” OTs also felt exhausted from the constant narration required for coaching parents. Lucy (Clinic 3 administrator/OT) described how this increased demand for communication left her feeling drained:

I always say in peds, we’re exhausted at the end of the day because you have to analyze constantly what’s happening in the moment. But I was exhausted, beyond exhausted, at the end of a telehealth day . . . I’ve never spoken so much in my life.

Some of the feeling of burnout stemmed from a loss of boundaries. Miriam (Clinic 1 OT) described some families with multiple children who missed in-person therapy, not because of the specialized equipment but rather the “literal boundaries to help them . . . separate work and home and therapy.” Similarly, Alexis (Clinic 1 caregiver) described a lack of privacy with telehealth: “[It was] exhausting and difficult because it [felt] like we were always on the freaking computer, on camera. When you’re home, you don’t want to be watched, you want to be comfortable and relaxed . . . [The lack of separation] was really challenging.” Many OTs felt an encroachment on professional boundaries as they had more emails, calls, and texts with parents outside of sessions to plan or share resources. This was challenging, as Gabriela (Clinic 1 OT) shared,

Before the pandemic, I tried not to give my cell phone number to families so I wouldn’t run the risk of crossing any boundaries. But in pandemic times you need more immediate communication, so I’ve been texting a lot more with families. Still trying to keep that line. It’s really important to me [for] work/life balance.

Child Developmental Outcomes

Some participants noted concerns about children’s slowed developmental progress, skill regression, or anticipated concerns for generalization of progress to other environments. Zoe (Clinic 2 caregiver) had concerns about her son’s progress compared with in-person therapy, saying, “The thing that troubles me—we have all these goals. Are we going to get a typical result doing this?” She noted that telehealth required more practice outside of session, resulting in her son being overworked and delayed in meeting goals. Even for children who progressed with telehealth OT, some participants worried about how to maintain those skills in other settings. Gabriela (Clinic 1 OT) reflected on a client: “I don’t think he’s going to lose all those skills he gained during telehealth. We [just] need to make sure he can carry those skills over when he’s challenged to transition from home to the car to school and back.” In sum, compared with in-person therapy, participants found that telehealth resulted in initial financial loss, blurred boundaries and burnout, and concerns for children’s development.

Positive Outcomes of Conducting Telehealth OT

Participants also revealed positive outcomes of telehealth OT, categorized in the following subthemes: (a) Financial, (b) Equity, and (c) Safety and Well-being.

Financial

Participants also identified positive financial outcomes: After an initial drop in billing, clinics were able to remain financially stable during the pandemic, with telehealth as the primary mode of OT delivery. Sophie (Clinic 1 administrator/OT) said she was “shocked that our attendance has been better than it’s ever been.” Her staff and client attendance was better with telehealth, which helped keep consistent billable numbers. She approximated that only four out of 600 families declined telehealth services, reinforcing her belief that telehealth OT is feasible and satisfactory: “That, to me, feels like we’re at least doing enough to continue to support families . . . I have 596 families feeling like this is an effective model.”

Equity

Many participants felt that telehealth promoted equity. Sophie (Clinic 1 administrator/OT) described her surprise that it may be preferred by low-income families:

Pre-pandemic, I would not have imagined that it was actually a low-income’s family’s choice to stay remote. I would’ve thought [that] there [were] more barriers . . . What I’m learning is, actually, it might make that service more accessible to [them]. Because they don’t have to find childcare, and transportation, and change their work schedule so significantly.

Similarly, Gabriela (Clinic 1 OT) described a situation where she had wanted to increase a child’s OT to twice a week, but the family could not because of their hour-each-way drive to the clinic. With telehealth, however, they were able to increase to two sessions a week.

Safety and Well-being

During the pandemic, telehealth promoted feelings of safety and well-being among all participants. Gabriela (Clinic 1 OT) explained, “Telehealth has actually been easier for [some kids] because their regulation hasn’t been challenged because they’re home, in their comfortable place. They’re actually thriving in telehealth.” Several OTs noted how therapy at home offered better options for taking safe breaks. Miriam (Clinic 1 OT) said,

I have one client who, when he gets overwhelmed, he’ll just close Zoom [laughs]. That’s my cue, “Okay, we were doing too much.” Then he’ll reopen it. “Oh, was that too hard? Let’s slow down.” You can’t really do that in person. They can’t run out of the building and come back when they’re ready . . . In their homes, there are more safe options for them to take a break and come back.

Jenna (Clinic 1 OT) also shared a story about a client whose regulation challenges affected his eating, and she gave insight into how he made significant progress in feeding while doing telehealth OT in home, his “comfortable place,” with loved ones and the family dog:

The family dog . . . has been a very unexpected but amazing tool to have . . . So, the family dog [is] in session with us. [At first], the client would just pick off pieces of the string cheese and give it to the dog. Now [he’s] taking a bit and spitting it out, holding it in [his] mouth, then giving it to the dog. We’ve been exploring a lot of other foods (of course being mindful to the dog’s belly!). But oh my gosh, it’s just huge for this client. The dog and the environment [were] really supportive for him to be more engaged, comfortable, and relaxed. Now he’s brought a lot of other foods to his mouth. This is a client where just the thought of that [used to] dysregulate him. . . . We still have to take breaks, [but they] are these beautiful moments with him and mom, tickling or snuggling. They’re able to come back to the table and do a little bit more. And there’s the dog waiting for them, barking, like, “Come back! I want more snacks!” I think [for] this client, we’ve been able to achieve this level of engagement because of telehealth.

Telehealth also promoted well-being among OTs. Gabriela (Clinic 1 OT) used to go home after in-person work exhausted, but after telehealth sessions, she had energy to study therapy-related topics she had been wanting to learn. In sum, positive outcomes included maintaining billables, equitable access, and promoting feelings of safety and well-being.

Discussion

In this qualitative study, we identified challenges and facilitators to conducting telehealth OT during the pandemic, as well as negative and positive outcomes resulting from the shift to telehealth OT. Of note, effective telehealth OT may rely on multiple, intersecting factors, and specific individual, family, and clinic factors may be necessary for success. These findings contribute to a growing body of literature and have important implications for the provision of OT services to autistic children and their families in the future.

One consistent finding in prior telehealth research is the important role of parent education and coaching (Proffitt et al., 2021). Our findings confirm this but provide unique insight because our clinician participants utilized different therapeutic frameworks and therefore had varying degrees of experience and comfort with parent coaching. Although all described this as a growth opportunity, the differences in our sample show that more practice with parent coaching may improve the quality of telehealth OT—as well as reduce stress and burnout—when services need to, or can be, provided remotely. This is a starting point for further examination of how different practices models may—or may not—be translated into telehealth.

Another difference among our sample is that, whereas clinicians largely saw parent coaching as a “net positive,” caregiver experiences were more nuanced. For example, although many parents, after a transition period, appreciated and felt empowered by parent coaching, they also felt the strain of “having to do everything.” Little is known about parental burnout with remote therapies and schooling, but recent research suggests that a hybrid model, with flexibility for in-person and telehealth options, may support parents’ mental health (Beight et al., 2022; Kerr et al., 2021). Clinician burnout, however, is receiving much more attention, ¹ in light of health care provider shortages nationally (Shin et al., 2022). Although the OTs in our study had an overall positive view of parent coaching, they also felt exhausted, at least initially, by the work of constantly narrating their thoughts and rationale. When they spoke of burnout, however, it was not related to coaching but rather at the blurring of boundaries caused by remote therapy. If hybrid models continue to be used, attention to caregiver and provider burnout is important.

Another theme in prior research relates to the importance of the therapeutic relationship and mutual trust for successful telehealth sessions (Foster et al., 2013; Gibbs & Toth-Cohen, 2011; Wallisch et al., 2019). Our findings echoed this, with the importance magnified by the uncertainty of a shared pandemic experience. Furthermore, our findings emphasized the intimacy of “being together” in families’ homes, and the sensitive nature of building rapport when families feeling “watched” or being observed in their most vulnerable moments.

Prior research also noted the benefit of telehealth, which enables therapy in the child’s natural environment (Camden & Silva, 2021). Our findings also showed this to be a benefit, both in some autistic children being far more comfortable and regulated in their home environment, and in therapists’ ability to discern more about the families’ lives, routines, resources, and ways of being together. Furthermore, our findings point to the value of therapists drawing on the strengths and resources of the home environment, not only enabling more authentic occupational participation that is readily incorporated into routines, but also encouraging resourcefulness and creativity when “fancy equipment” is not available. Our findings suggest this could also be a challenge, that is, if children are not supported to translate their skills into other environments; however, the majority of our participants viewed therapy in the home context as a strength.

Finally, prior research emphasized the potential for telehealth to improve access to therapy services (Ashburner et al., 2016). This was reflected in our findings, and some participants wondered whether continued access to telehealth, or hybrid models, might enable more children to receive services going forward. What seems clear from our study is that most participants hoped that funders will continue to see the value of telehealth, ensuring that telehealth OT remains an option—especially for families whose travel to the clinic is not always easy, and may not even be necessary.

One implication for OT practice is the need for high-quality training in telehealth best practices, including parent coaching. This is supported by a recent study of 193 OT practitioners, many of whom had to find telehealth training for themselves with the sudden shift in 2020, reiterating the importance of formal workplace trainings and administrative supports to maintain a high quality of OT services and reduce the risk of burnout (Abbott-Gaffney et al., 2022). In addition, OTs can learn from the stories of parents in our study about how easily parent coaching can feel like criticism, and from ways that OTs can make families feel at ease rather than criticized or lacking, that is, if they did not have certain materials around the house.

Our study was limited to just three Los Angeles area community clinics and may be less applicable to other types of OT, specifically those where hands-on therapy is more necessary. Furthermore, our sample was not balanced in terms of number or type of participants at each clinic and we lacked the perspectives of the autistic children themselves. The strengths of the study include the study design of multiple perspectives from three diverse community clinics.

Conclusion

This qualitative study identified barriers and facilitators, as well as negative and positive outcomes, of conducting OT services through telehealth for autistic children and their families. It raises questions about differences between therapeutic models in their translatability to telehealth, given the strong reliance on parent coaching, while also pointing to the ways that OT, at its core, does not need “fancy equipment” and is made stronger by seeing children in their natural environments. By understanding the experiences of pediatric OTs, clinic administrators, and caregivers of autistic children, this study provides insight into ways to sustain and improve telehealth service delivery as we move toward a future in which telehealth will likely continue to play a prominent role.