Caregiver and student perspectives on school services for students with traumatic brain injury during the COVID-19 pandemic

3.2.1Education delivery, services, and accommodations for students with TBI

Students and caregivers reported on the impact of COVID-19-related school changes to the general delivery of education in a remote/hybrid format, changes in delivery of services, and changes in use of technology. Subthemes focused on a) impact of a remote/hybrid setting on services; b) impact of a remote/hybrid setting on general education; and c) access to and use of technology.

3.2.1a Impact of a remote/hybrid setting on services

Students and caregivers reported a wide range of experiences related to services and accommodations in the remote and hybrid settings, with some students no longer being offered any services and other students having no service interruptions.

Of the students no longer receiving direct or support services or accommodations, the two most frequently identified factors were the inability to update an IEP/504 plan and reports of teachers being unaware of or overlooking services/accommodations. Caregivers noted difficulty coordinating with all necessary individuals to develop a 504 plan due to closures and schedule changes in the school and healthcare providers’ offices. One caregiver elaborated, “The school is not open to properly re-do his IEP to even get him those [pre-COVID] services” (C33, severe). One student discussed the confusion he and his teachers experienced while transitioning between remote and hybrid learning settings regarding accommodations specified in his 504 plan: “Some important information has just kind of gotten lost out in space. Even with the teachers not remembering things because they have so much on their shoulders ...   It’s just been helter-skelter” (S30, mild).

Some students and caregivers reported that services or accommodations continued, despite transitioning to remote or hybrid formats. Some caregivers reported that services their student received were generally the same as services received prior to pandemic-related school changes, while other caregivers discussed that the format of the services changed to meet the new methods of school delivery. For example, one caregiver discussed how an accommodation to assist reading fluency was adapted to fit remote school days: “Her visual tracking isn’t the strongest ...  and that’s why we incorporate[d] people reading the test to her [before COVID-19 remote learning] ...   [Now] doing it online, ...  if she’s struggling with a word, the computer will say it for her. She does very good with accommodating ...  to be able to get it done herself” (C39, severe).

However, many students and caregivers also indicated these services and accommodations in the remote or hybrid settings came with new challenges. Multiple students reported certain services and accommodations were unable to be implemented completely, rendering them less effective: “Since COVID, [supports are] not as effective. It’s no one’s fault” (C27, mild). One of the challenges families described was the inability to fully participate in computer-based learning due to TBI-related cognitive difficulties, including reduced concentration, difficulty interacting through a screen, and inability to follow along with lesson plans while continuously opening different links and software. One caregiver stated, “Even if you put the computer in front of my son and said, ‘raise your right arm,’ he would not be able to do that or answer them. He’s not even guaranteed to look at the computer ...  Zoom is not working at all for him” (C33, severe).

Another challenge encountered was translating services to the online format. Increased screentime was a key obstacle for students, as noted by several students and caregivers who reported an increase in migraines or visual symptoms after being active on the computer for multiple hours per day. One student explained, “Being on the computer for 8–9 hours a day, especially with the concussion symptoms, my eyes get really, really strained. I started to get these migraines” (S3, mild). Accommodations for one-on-one teacher/aide check-ins were another major area of concern as caregivers observed a decrease in the consistency and efficacy of check-in occurrences. Check-ins were described by one caregiver as, “[Teachers/aides] ...  are checking in with each student on the Zooms, like ‘hey do you have any questions?’ That’s a broad statement for the whole class. That’s not how I think [individualized check-ins] should be” (C9, mild). In addition, the inability to receive specific, classroom-based technology for special education was a major challenge for some students with TBI, affecting their ability to participate and successfully learn at home: “Ever since COVID, it’s been harder for him and his learning. His computer is so small. He doesn’t have the Visioboard here. The Visioboard is too big [to be brought home]. He can’t do much on the computer” (C31, severe).

Lastly, some caregivers reported changes in delivery of speech therapy, physical therapy, and counseling services due to remote learning and COVID-19. Caregivers noted changes in frequency of therapy and counseling services, the need to miss appointments due to school or COVID guidelines, and challenges related to the transition to online sessions: “Counseling on-and-off had to be virtual, but she has had some face-to-face ...  We did have to miss two or three because of COVID things within the family” (C12, moderate). Another caregiver reported that “we had to stop all of [the therapy their child was receiving due to school closures and COVID-19]” (C15, severe). Of the students whose therapy and counseling services were interrupted, some caregivers expressed concern with their student not progressing or falling behind without those services. One caregiver-generated solution was, “I purchased some equipment to do [the child’s therapy sessions] on our own ...  we’ve done some therapy on our own. We’ve done some virtual” (C15, severe).

3.2.1b Impact of a remote/hybrid setting on general education

Independent of obstacles related to implementing and receiving services and accommodations for complications of TBI, caregivers and students identified additional challenges with adjusting to general education delivery after school closures. Students and caregivers both noted that teaching styles and expectations in the classroom were highly impacted by remote schooling, with a decrease in hands-on, teacher-led learning activities and an increase in self-directed learning: “He needs to be instructed with a teacher and being self-taught online is not helping” (C34, mild). One caregiver elaborated on the impact of hybrid learning, where some students were present in class and others were present via virtual platforms: “His teachers, many of them, are struggling with the hybrid school model. Either they focus on the children in front of them in the classroom, or they focus on the children who are on the tablet. They cannot seem to focus on both” (C23, mild). With the new format of teaching and learning, many respondents also commented on how difficult it became to track and turn in assignments: “The classes have been getting harder, but her grades have been slipping because of her not handing in work” (C4, moderate). Caregivers discussed the increase in responsibility for the students and caregivers to stay organized and complete tasks: “[The new school format] has put a lot more pressure and responsibility on me to make sure he gets all his asynchronous work done” (C29, mild).

Motivation, focus, and distractions also became major concerns with remote/hybrid learning. One student described their lack of motivation as, “I think my drive has been really affected. Like before I had an amazing work ethic ...  [Now] I’m like, what if we shut down [next] week, then all that hard work ...  might not be worth what it would have been if we were in-person” (S30, mild). Distractions in the home were mentioned as a pivotal factor in students’ lack of focus during the school day, as pets and/or other family members were now present: “We have pets. She has a lot of distractions. If someone knocks on the door. Just daily stuff you don’t normally have in the classroom that she sometimes gets distracted by” (C4, moderate). Boredom was also recognized to play a large role in focus: “I think what it is, is I get bored after a couple hours [of online school], and then I’ll just go and do something else” (S26, mild).

Student grades were frequently discussed during the interviews, with families reporting a range of improving, declining, and/or similar grades after the transition to remote/hybrid learning. Challenges noted by students with TBI who were receiving lower grades with remote/hybrid learning included decreased understanding of topics due to reliance on self-teaching, virtual learning not working well for them, and grades staying low after sustaining their TBI. A caregiver discussing virtual learning stated, “Well, the beginning of the [2020–2021 school] year it was all virtual [remote], and her grades went really low again, even worse than when she had her concussion” (C35, mild). Interestingly, students with the same or better grades still had concerns with both teacher grading practices and their earned grades. One student described concerns with COVID-related pass/fail grading practices: “[Why work so hard just to pass]? Why am I doing my hard level, when so-and-so can slack off, and we get the same grade?” (S25, mild).

Although many challenges were identified with general education delivery in the remote or hybrid settings, students and caregivers also recognized advantages with the new school format. The most frequently acknowledged advantage was the ability to self-pace learning and assignments: “You’re kind of going through the material at your own pace and doing what you have to do to grasp it. So, there’s really no struggles” (S1, mild). This allowed for increased flexibility in daily school schedules throughout the week: “I seem to do better if I invest full days in the beginning of the week, and then a few hours on the other days. It’s better than doing a few hours every day of the week for me” (S1, mild). One student identified this flexibility as “more freedom” (S15, severe). Flexible scheduling and self-pacing were additionally helpful for children with ongoing symptoms post-TBI and those with multiple follow-up appointments throughout the week: “It would’ve been too difficult with my appointments, and I just don’t do well in the morning. So, we opted for the virtual academy. I can do it any time of the day” (S8, mild). [“Virtual academy” indicates all-remote instruction instead of an option for either hybrid or in-person learning.] One student viewed the increased flexibility and self-pacing as an increase in independence, even though they reported receiving lower grades: “I feel like my grades look a couple points lower now, but really, they are a lot higher because I’m doing a lot more things independently” (S5, moderate). In addition, one caregiver discussed how teachers permitted multiple attempts on certain assignments. Some caregivers also noted that their students with TBI felt less pressure learning in a hybrid setting: “The pressures of being in school just two days a week [has] worked well for her. She’s getting the social interaction, but it’s not five days a week that she has to be ‘on’ and front-and-center” (C10, moderate). One caregiver discussed this reduction of student stress as alleviating social anxiety: “ ...  being in the school and around other people, it gives her anxiety ...  which I feel actually affected her performance. So, being at home, she doesn’t have that anxiety” (C34, mild).

3.2.1c Access to and use of technology

With the transition to remote/hybrid learning, families discussed the requirement to acquire and operate devices with internet access to attend classes and submit assignments. School-provided devices did prove challenging for some students to use, and families cited multiple technology issues. No respondents reported being unable to acquire a device or internet services, but the device being used posed specific challenges. One caregiver explained, “We have internet and we’ve been using my cell phone to let him Facetime with his teacher, which is sometimes hard because my phone is constantly going off in the middle of their sessions. We don’t have a specific device for him” (C33, severe). Caregivers and students also reported significant challenges with understanding how to navigate new applications and platforms: “She is struggling, even finding the assignments on there  ...   And her dad look[ed] at it and it’s very confusing for even him, let alone someone that’s maybe [already] struggling [with online learning]” (C28, mild).

3.2.2Social relationships for students with TBI and their caregivers

Within this second major theme, respondents described the social impact of transitioning to remote/hybrid learning for both students with TBI and their families. Subthemes addressed both challenges and advantages of remote learning as it impacted families and peers.

3.2.2a Family impact

Caregivers reported the transition to remote learning as demanding, since students were now home most days, and depending on the age of their student(s), some needed support during online school hours: “It’s a struggle because we have a kindergartener, a first-grader, a fifth-grader, and a ninth-grader. Our struggle is finding space for them to do their work so they are not interrupting ...  or they can be heard on the other person’s microphone” (C20, moderate). Caregivers expressed an increasing burden to ensure their student was completing work: “It puts more pressure on us as parents to put our thumb on him to make sure things are getting done” (C36, mild). The pacing of remote learning was also noted as a concern: “I constantly, basically, do the work for him on the computer,  ...  I interpret for him ...  [because] it takes him a bit longer to come up with the answers” (C26, mild). Caregivers additionally expressed the stress and unpredictability that came from their students’ ever-changing schedules: “There’s a lot of uncertainty about everything ...  It kinda misplaces us for a bit when we have to switch from virtual to in-person every other month or so” (C30, mild).

Although caregivers described multiple challenges, there were also advantages to the transition to remote/hybrid learning that several families acknowledged. Spending more time at home with the entire family was a predominant positive theme surrounding remote learning: “For us it has been really healing for our family ...   So, it’s just like, we’re connecting together and ...  I think it’s helped calm [our child’s] anxieties” (C17, mild).

3.2.2b Peer impact

The leading social challenge students and caregivers defined was the overall decline in social interactions and peer support after the transition to remote learning. Caregivers described noticing social isolation and social withdrawal in their students from the onset of remote/hybrid learning, both inside and outside of the classroom. One caregiver stated, “No [she does not interact with her peers during online learning]. They don’t have that opportunity” (C28, mild). In the hybrid setting, during in-person school days, one student noted, “They have the desks so far away from each other [for social distancing], so I mean, you can’t really interact that much [with] people” (S38, moderate).

In addition to fewer peer interactions during the school day, students and caregivers also discussed the added isolation related to their TBI and managing the associated complications during COVID-19 and remote learning: “Since we aren’t in school and because I’m not hanging out with anyone outside of school due to the concussion symptoms ...  I just don’t see anybody, at all, ever” (S1, mild). Another student elaborated, “I think it’s [COVID that has] grown me really distant, but that’s also from my brain injury” (S5, moderate). Students described feelings of loneliness, sadness, and anxiety as social and emotional complications of TBI, and how these feelings were reoccurring or worsening with the transition to remote learning and COVID-19: “And then after COVID, it’s the same thing [as TBI, I was socially isolated again]” (S30, mild). One caregiver compared social interactions post-TBI and those during remote learning as, “actually not much different from each other ...  With the brain injury, she had to be home, she had to be resting. And the same thing with COVID. I think it has a very similar impact, socially” (C32, mild). Another caregiver elaborated on the feelings of isolation from peers post-TBI mirroring those experienced by other students during COVID-19 and remote learning: “A lot of the times she couldn’t do all the activities that her other friends were doing [after her TBI], so she really felt [left] out. A lot of her friends tried to understand what she was going through, but they really didn’t, so she felt ...  isolated ...  just because her friends didn’t understand. Now, COVID affects everybody. It’s not just affecting her” (C35, mild). The key difference noted by one student between remote learning and post-TBI complications was: “COVID just separated everyone. You don’t get to talk to anyone ...  unless you’re doing it online and forcefully. I could have fought through the pain [of TBI because] ...  there was the option there [to not be separated from everyone]. Whereas, during COVID, there [are] no options” (S36, mild).

Although some students and caregivers described an abundance of social challenges, others recounted no changes in social support with the transition to remote/hybrid learning: “I haven’t seen any change [with peers] from prior to injury to after injury, prior to COVID to after COVID” (C2, moderate). Other students and caregivers described continued social support from virtual social interactions, like gaming, messaging, and video-chatting. One parent noted their concern with virtual peer interactions after remote learning during the day: “Which is terrible because it’s another screen, but it’s the only way he can really talk to his friends” (C37, moderate). In terms of in-person social interactions, one student stated, “[My peers and I] just communicate now through social media ...  Some wanna be safer than others” (S22, severe). Other parents stated their child and their friends “were getting together outside,” and that they “don’t think [peer interactions have changed] ...  I don’t think these kids really follow COVID stuff” (C33, severe).