key: cord-0695162-1p0azukn
authors: Morrow, Emily L.; Patel, Nirav N.; Duff, Melissa C.
title: Disability and the COVID-19 Pandemic: A Survey of Individuals with Traumatic Brain Injury
date: 2021-01-30
journal: Arch Phys Med Rehabil
DOI: 10.1016/j.apmr.2021.01.064
sha: 505d8b22e5cd091502a3ad3484b880d6d9aff905
doc_id: 695162
cord_uid: 1p0azukn

Objective To identify the consequences of the COVID-19 pandemic for individuals with traumatic brain injury (TBI), with particular attention to unique effects for individuals with chronic disability. Design Individuals with and without a history of TBI completed a web-based survey. Setting Participants were recruited from the Vanderbilt Brain Injury Patient Registry in Nashville, TN and completed the survey from their homes between May and June 2020, during social distancing related to the COVID-19 pandemic. Participants 47 individuals in the chronic phase of moderate-severe TBI (>6 months post-injury) and 51 non-injured healthy comparison (NC) peers completed the survey. Outcome: Participants, or respondents, answered a mix of multiple-choice and free-text questions about how the COVID-19 pandemic has affected their work, education, medical care, social communication, sources of information and decision-making, and mental and physical well-being. Individuals with TBI also answered questions about how TBI has affected their experiences of the pandemic. Results As a group, respondents with TBI reported less pandemic-related behavior change (e.g., daily habits, virtual social visits, and masking) than NC peers. Both NCs and respondents with TBI identified healthcare providers as trusted sources of public health information. One third of individuals with TBI indicated that brain injury has made coping with the pandemic more difficult, and respondents identified mental health challenges and social isolation as key barriers. Conclusions These results suggest that healthcare providers should look for ways to provide tailored education and reduce social isolation for individuals with disability during the ongoing COVID-19 pandemic. We discuss a number of direct suggestions from participant responses.

In early 2020, the COVID-19 pandemic swept the globe, bringing with it widespread 38 societal disruption. The pandemic has affected all facets of public life, but certain groups may be 39 more vulnerable to the virus itself or to related changes in safety protocols, healthcare services, 40 and social infrastructure. Specifically, there is increasing concern that individuals with disability 41 may be disproportionately affected by the pandemic and related reductions in accessibility of 42 supportive services and networks [1] [2] [3] [4] [5] . 43

Approximately 6.2 million Americans currently live with disability related to traumatic 44 brain injury (TBI) 6 , which may result in broad impairments in cognition, communication, 45 mobility, sensory domains, and/or behavior or mental health 7-12 . TBI is often called an "invisible 46 injury" because individuals with TBI may not exhibit a physical disability but instead struggle to 47 remember important details, to solve problems, or to communicate effectively with others 10 . 48

Consequently, it may be difficult for individuals with TBI to reintegrate to the community after 49 injury 11 . People with a history of TBI are at increased risk for unemployment [13] [14] [15] , housing 50 insecurity 16 , interpersonal violence 17 , and interactions with the legal system 18 . In addition to 51 these potential sources of social and economic vulnerability, many individuals with TBI feel 52 socially isolated or have smaller support networks than their peers due to impairments in social 53 communication or misunderstanding of the injury's consequences [19] [20] [21] [22] . Taken together, injury-54 related deficits, social isolation, and increased need for medical and support services may place 55 individuals with TBI at increased risk for negative consequences from the COVID-19 pandemic. 56

We conducted a survey of individuals with a history of moderate-severe TBI to better 57 understand how the pandemic has affected individuals with TBI, how individuals with TBI make 58 decisions about their own health, and how healthcare providers and policy makers might best 59 support individuals with TBI during the pandemic. capacity. Masking and social distancing were encouraged, gatherings were limited to 10 or fewer 108 people, and high-risk individuals (i.e., those 65 and older or with pre-existing medical conditions) 109

were asked to stay home. 110

The goal of this study was to provide a snapshot of how individuals with and without a 112 history of TBI responded to the COVID-19 pandemic during a specific phase and in a specific 113 geographic region. Consistent with this goal, and because this is the first exploration of pandemic 114 response for individuals with TBI, we report descriptive statistics alone, without testing specific 115 hypotheses about responses based on group membership. We expect that these data will provide 116 a baseline as to how individuals with TBI are responding to the pandemic and will begin a 117 derivation chain informing future hypothesis-driven research in this area 28 . Response percentages for each group are listed for multiple-choice questions; percentages are not 123 listed for free-text responses. On some questions, respondents could choose more than one 124 option, so total percentages reported for those questions may exceed 100%. In this section, we 125 focus our reporting on those responses most relevant to the COVID-19 pandemic and on select 126 free response questions (e.g., those related to medical appointments) from participants with TBI. Overall, 72.34% (n=34/47) of respondents with TBI reported that they were currently 131 employed, relative to 82.35% (n=42/51) of NCs. Of note, respondents with TBI were more 132 likely than NCs to be classified as essential workers (e.g., retail worker, nurse; 70.59%, n=24/34, 133 relative to 45.24% of NCs, n=19/42). See Figure 1 for how participants' employment status had 134 changed since the start of the pandemic. 135

Of those respondents who had retained the same position since the start of the pandemic, 136 respondents with TBI were more likely to report stable job duties and schedule (38.46%, 137 n=10/26, relative to 18.42% of NCs, n=7/38). Respondents with TBI were less likely to have 138 transitioned to working from home full time (15.38%, n=4/26) than NCs (42.11%, n=16/38). 139

Respondents with TBI were less likely than NCs to report that COVID-related changes had 140 affected the difficulty of their jobs (see Supplemental Materials). 141

Respondents with TBI and NCs were comparable in changes to their family and caring 142 responsibilities since the start of the pandemic (see Supplemental Materials). 143

Only one participant in this study (an NC) had been diagnosed with COVID-19 since the 145 start of the pandemic. We asked respondents about how they managed scheduled medical 146 appointments during the pandemic. Of those who had appointments scheduled, 60.72% (n=17/28) 147 of respondents with TBI had attended their appointments in person, relative to 50.00% (n=11/22) 148 of NCs. Respondents with TBI who attended appointments in person cited the essential nature of 149 those appointments (n=11), the need for hands-on care (n=5), and acute medical incidents (n=5) 150 as primary reasons. In contrast, 28.57% of respondents with TBI (n=8/28, relative to 40. increase in news consumption since the start of the pandemic. We asked respondents to rank the 178 trustworthiness of sources of pandemic-related information; see Table 2 for results. Respondents 179 with TBI were more likely than NCs to perceive government and media pandemic responses as 180 over-reactions; see Table 3 . 181

Respondents with TBI were less likely than NCs to report staying home more when not at 183 

Approximately one third (30.43%, n=14/46) of respondents with TBI indicated that their 208 injury history has made the pandemic more challenging. Some respondents who did not find that 209 TBI has affected their experience of the pandemic indicated that they do not perceive any 210 lingering effects of injury (n=6) or that they do not see how TBI would make a difference (n=6). 211

Respondents who did report TBI-related changes in their experiences of the pandemic cited 212 mental health concerns (n=9) and increased cognitive challenges (n=5) as key factors. 213

We asked respondents with TBI to provide suggestions as to how healthcare providers 214 might improve supports for individuals with TBI during the COVID-19 pandemic. Most frequent 215

suggestions were an increase in reassuring check-ins to combat isolation (n=6) and opportunities 216

to meet or engage in support with other people who have had a TBI (n=4). 217

We conducted a survey of individuals with a chronic history of moderate-severe TBI and 219 healthy peers about changes to daily life, decision making, and support needs during the 220 pandemic. The results from this survey provide a snapshot of how individuals with TBI are 221 J o u r n a l P r e -p r o o f coping with the pandemic and may inform future efforts to tailor support during this evolving 222 public health crisis. A number of key observations emerged. 223

Individuals with and without a history of TBI reported broad changes resulting from the 225 COVID-19 pandemic. However, respondents with TBI were less likely than NCs to report that 226 they had experienced significant alterations to daily life. Individuals with TBI were less likely 227 than NCs to report that pandemic-related changes have affected their mental and physical well-228 being or their ability to plan for the future. Individuals with TBI also reported more stable daily 229 habits (e.g., sleep, diet) since the start of the pandemic than NCs. 230

TBI may result from reduced external changes relative to NCs. For example, NCs were more 232 likely to have transitioned to working from home, whereas individuals with TBI were more 233 likely to have been unemployed since before the pandemic or to be classified as essential 234

workers. As some of the consequences of the pandemic (e.g., reductions in social interactions) 235 mimic the consequences of TBI alone, individuals with TBI may have experienced fewer 236 changes overall. 237

It is also worth considering that TBI-related disability may play a role in reported 238 behavioral stability and pandemic-related decision-making. The goal of this study was to 239 document the effects of the COVID-19 pandemic on individuals with TBI, rather than to 240 determine causal links between TBI and pandemic-related behaviors. That said, the results here 241 suggest that some individuals with TBI-related disability may be less likely to make behavioral 242 adjustments in response to the pandemic or other large-scale crises. For example, as a group, 243 respondents with TBI were less likely than NCs to report behavioral changes consistent with 244 J o u r n a l P r e -p r o o f pandemic-related public health recommendations, such as staying home more or wearing a mask 245 when in public. Although they were as likely as NCs to have reduced in-person social visits, 246 respondents with TBI were less likely than NCs to have increased virtual social interactions 247 (which may be protective against social isolation). This lack of behavior change may place some 248 individuals with TBI at risk for disproportionate negative outcomes from the pandemic. Some respondents with TBI also noted that pandemic-related changes have exacerbated existing 255 cognitive-communication deficits (e.g., memory deficits), or that TBI has made it more difficult 256 to cope with mental health challenges during the pandemic. Given that our understanding of COVID-19 is dynamic with evolving public health 267 recommendations, it is critical for healthcare providers and policy makers to consider how best 268 to provide timely, accurate, and useful public health information to individuals with TBI. 269

Respondents with TBI, as a group, were less likely than NCs to have increased their news 270 consumption since the start of the pandemic and more likely than NCs to report that they receive 271 trustworthy public health information from family and friends. However, both respondents with 272 TBI and NCs rated healthcare providers as the most trustworthy source of public health 273 information. In this context, healthcare providers and public health officials should consider how 274 best to provide information to individuals with TBI in a way that is accessible and obtainable. 275

For example, some individuals with TBI-related cognitive-communication deficits will benefit 276 from information provided through multiple modalities (e.g., verbal and written) and without 277 complex language 10,29 . In cases where public health recommendations may be less accessible 278 (e.g., require additional or novel use of technology), some individuals with TBI may benefit from 279 additional support to use those modalities. Additionally, when asked how healthcare providers 280 may best support individuals with TBI during the pandemic, respondents noted that check-ins 281 from providers or opportunities to interact with other individuals with TBI would reduce their 282 feelings of social isolation. A combination of tailored information and regular contact may be 283 critical in supporting some individuals with TBI in making behavioral adjustments for increased 284 safety and social connectedness during the COVID-19 pandemic. 285

People with disability in general 30-33 , and people with TBI in particular 34 , are often 287 preparedness for large-scale crises such as pandemics and natural disasters 30-34 , the results from 297 this survey suggest that healthcare providers and policy makers may need to take an increased 298 role both in increasing healthcare access during the pandemic and in providing information and 299 support that is accessible and tailored to the needs of specific disability populations. 300

Although we report differences in group trends between respondents with TBI and NC 301 peers, there was considerable variability in behavior and perceptions within each group. This 302 variability is unsurprising given the vast range of behavioral and functional outcomes following 303 TBI 11 . As such, in addition to considering the needs of specific disability populations, providers 304 should continue to take the needs of each individual with TBI into consideration when providing 305 pandemic-related support. 306

Of course, this type of recommendation may be difficult to implement in our current 307 medical model for TBI. Service delivery is often front-loaded to acute care and rehabilitation 308 settings, despite the fact that TBI is a chronic disability in which individuals would benefit from 309 a range of services, intermittently, across the lifespan. Any comprehensive disaster response 310 must consider individuals with chronic but stable disability, like TBI, in addition to those with 311 developmental or degenerative disorders who may receive more consistent healthcare follow-up. 312

As an increasing number of individuals experience prolonged neurological disability caused by 313 COVID-19 40 and scientists warn that we are at risk for an increase in large-scale disasters, this is 314 an ideal time to reimagine our service delivery models for individuals with chronic disability. 315

We hope that the findings from this survey provide some baseline data that will inform increased 316 discussion and support for such endeavors to meet ongoing needs of individuals with TBI and 317 other chronic disabilities and to better anticipate their unique needs during crises. 318

Results from this survey provide a snapshot of how one group of individuals with TBI, in 320 a specific geographic region, responded during a constrained phase of the COVID-19 pandemic. 321

It is possible that there are factors beyond brain injury that differ systematically between groups 322 that contribute to the results here. We believe, however, that the close demographic matching of 323 the groups significantly reduces this concern. Furthermore, the restricted region and timescale 324 allowed for controlled variability in regional pandemic circumstances, as participants from both 325 groups were drawn from the same metropolitan area. Given that the pandemic is evolving, there 326 will also be need for ongoing surveillance as to how to support individuals with TBI at each 327 stage and across additional geographic regions. 328

As this is the first study assessing how individuals with TBI are responding to the 329 pandemic, we did not test specific hypotheses and instead provide baseline data that may form 330 the first link in a derivation chain for future hypothesis-driven research in this area 28 . In 331 developing a TBI-specific pandemic response, and in rehabilitation research more broadly, it is 332 critical that stakeholders with disabilities have a guiding voice 41 . Our participants provided initial 333 responses as to how we might improve healthcare services for individuals with TBI, but further 334 studies may build upon these results to request feedback on specific intervention options. 335

Additional studies with larger sample sizes will also allow for informed hypotheses and direct 336 statistical tests of between-group differences in pandemic response. 337

As the COVID-19 pandemic affects all facets of daily life, it is critical to consider the 339 pandemic's differential effects on individuals with TBI and chronic disability. We reported 340 results from a survey that provide a snapshot of how individuals with TBI are responding to the 341 COVID-19 pandemic. Results from this survey suggest that some individuals with TBI may 342 benefit from tailored and ongoing public health education, as well as support in making 343 behavioral adjustments for increased safety and social connectedness during the COVID-19 344 pandemic. Considering how the pandemic has affected individuals with TBI may also allow for 345 more proactive planning for supporting individuals with chronic disability during future large-346 scale crises. 

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