Ongoing Challenges Related to the COVID-19 Pandemic Among People With Brain Injury

Abstract

The COVID-19 pandemic exacerbated social isolation among people with traumatic brain injury (TBI). Yet, little is known about how changes in personal factors, environmental factors, or the characteristics of activities affected social participation. We examined experiences with social isolation and barriers to social participation using the person–environment–occupation–performance model as a framework. Twelve adults with TBI participated in a series of three focus groups. Data were analyzed using thematic analysis. We identified two primary themes with sub-themes: (1) social isolation experiences: (1a) emotional impact and (1b) managing personal risk; and (2) greater barriers but a lack of strategies to address them: (2a) access and opportunities and (2b) social and societal factors. New environmental barriers and task demands affected occupational performance, and participants identified few successful strategies to overcome these barriers. Occupational therapy can develop new strategies to re-balance the person–environment fit and enhance social participation.

Plain Language Summary

People with traumatic brain injury (TBI) have experienced increased social isolation because of the COVID-19 pandemic. There has been limited research to describe how social isolation has been experienced beyond the initial pandemic lockdowns, what limits people from participating in more social activities, and how occupational therapy can help people overcome these new challenges. We interviewed 12 people with TBI to understand their experiences of social isolation using the person–environment–occupation–performance model as a framework. We found that people with TBI have continued to experience worse social isolation, which has affected their emotional well-being. They continue to worry about their risk of exposure and illness. We found that limited opportunities for social activities, inaccessibility of activities, and a lack of social support have contributed to social isolation. Occupational therapy practitioners can help people with TBI develop new strategies to overcome barriers to social participation so they may safely return to important social activities.

Keywords

environment qualitative research social participation

Introduction

During the COVID-19 pandemic, people with disabilities experienced greater social isolation than those without disabilities (Goggin & Ellis, 2020; Lund et al., 2020; Morrow et al., 2021). People with disabilities have experienced higher risk of severe COVID-19 or death and reduced access to health care, making social participation riskier than for the general population (Annaswamy et al., 2020; Sabatello et al., 2020). Furthermore, people with disabilities have experienced discrimination, unemployment, and lack of access to critical activities, services, and supports that contributed to fewer opportunities for social participation (Goggin & Ellis, 2020; Lund et al., 2020). Together, these new challenges resulted in fewer social contacts and lower social support, contributing to worsened social isolation (Goggin & Ellis, 2020; Morrow et al., 2021). There is little evidence to suggest that these new pandemic-related challenges have improved even in the later stages of the pandemic.

Among people with disabilities, people with traumatic brain injury (TBI) are particularly vulnerable to social isolation. Social isolation is prevalent after TBI and has been identified as a highly prioritized issue, both for individuals with TBI, and for the broader public health (Hammel et al., 2008; Holt-Lunstad et al., 2017). The person–environment–occupation–performance (PEOP) model (Baum et al., 2015) provides a framework for examining the factors that have contributed to social isolation among people with TBI. The PEOP model posits that personal factors (e.g., physical and cognitive function), environmental factors (e.g., physical and social environment), and characteristics of occupations can each contribute to successful performance of occupations (Baum et al., 2015). A strong fit between the person, the environment, and the occupation enables participation, while the lack of a strong fit leads to problems with participation (Baum et al., 2015). Prior to the pandemic, there was evidence to suggest that each of the PEOP model’s domains contributed to social isolation among people with TBI. Personal factors associated with TBI, including changes in cognition, communication, and social interaction skills, are associated with fewer close relationships and lower social participation (Kersel et al., 2001; Kersey et al., 2019; Milders, 2019). Environmental factors—including lack of social support, discrimination, lack of physical and cognitive accessibility of public spaces, and fewer financial resources—result in fewer opportunities for social participation, contributing to social isolation (Hammel et al., 2015). Finally, social occupations may be difficult for people with TBI, which may affect occupational performance and preclude greater social participation.

Components of the person, environment, and occupation domains continue to influence the performance of social occupations, and thereby, influence social isolation for individuals with TBI following the onset of the COVID-19 pandemic; however, the factors in each domain and the interactions among them have likely changed. Understanding changes in factors that facilitate social participation is critical to determining the most appropriate intervention approaches to support people with persistent social isolation, including people with TBI. Although some research examined the experiences of social isolation among people with TBI during the early stages of the pandemic (Bellon et al., 2023; Goverover et al., 2022; Morrow et al., 2021), little research has examined the ongoing pandemic-related challenges that people with TBI continue to face. Furthermore, little research has examined the specific barriers to greater social participation related to the pandemic or strategies to overcome persistent barriers. This gap in research leaves occupational therapy practitioners without adequate tools to address the critical, long-term problem of severe social isolation in a world of new challenges. Therefore, the purpose of this study was to examine the experiences of social isolation throughout the COVID-19 pandemic up to the time of data collection (July-October, 2022), including barriers to social participation, and possible strategies to achieve social participation goals.

Method

In this descriptive qualitative study, we conducted focus groups using a community-based participatory research approach (Israel et al., 1998; Mohatt et al., 2021). This study was conducted in collaboration with a community-based day program serving diverse people with TBI. The program provides member-driven services to enhance community living and participation, wellness, and social connection. Members are racially diverse, many of whom live in low-income households in under-resourced areas of Chicago. This program served as a community partner throughout this project to address a problem—social isolation—their members wanted to improve. This study grew from multiple conversations about rehabilitation and community participation priorities between the research team and members and staff at the community program. Two people with TBI were active members of the study team, both to support participants and to strengthen the credibility of this study through its design and analysis. These peer leaders were involved in designing the interview guide, facilitating focus groups, and interpreting results. Cognitive supports were provided to the peer leaders, including written meeting agendas and notes, frequent reminders about study objectives and methods, structured meeting times and procedures, and use of plain language. The design and reporting of this study were guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (Supplemental Materials).

Between July and October of 2022, two cohorts of six participants each completed a series of three 2-hr focus groups. During this timeframe, mask mandates and vaccination mandates had been lifted in the city of Chicago and many pandemic-related policies had been ended. The peer leaders with TBI and a staff member from the community program participated in the development of the question routes and helped ensure the use of plain language. Focus groups were co-facilitated by the first author and the two peer leaders. We provided accommodations to ensure cognitive accessibility (Mohatt et al., 2021), including advance provision of questions to allow participants to prepare, written questions available for participants to follow during each session, slow speaking and repetition when needed, written notes on a whiteboard in large print to annotate important discussion points, and a mid-point break to reduce cognitive fatigue.

Participants were recruited through the community-based program and were eligible if they had experienced a TBI more than 6 months prior to enrollment and spoke English. Participants were excluded if they had a severe cognitive or communication impairment limiting their ability to participate in focus groups. Staff at the community program helped us purposively recruit a sample with diverse social and cognitive needs, who would provide a broad range of experiences to enhance the transferability of findings. All participants were recruited in person at the community program and provided informed consent prior to participating in any research activities. Study activities were approved by the University of Illinois Chicago Institutional Review Board.

The first focus group session focused on defining social participation and social isolation and describing experiences engaging in social activities throughout the pandemic. The second session focused on identifying social participation goals and needs related to the achievement of goals. The third session focused on identifying barriers and supports to achieving social participation goals and strategies to manage barriers and supports.

Focus groups were audio recorded, transcribed by the first author, checked by a research assistant, and de-identified for analysis. We used ATLAS.ti 22 (Scientific Software Development GmbH, 2022) to assist with coding and data management. Using a thematic analysis approach (Braun & Clarke, 2006, 2022), two coders analyzed transcripts and identified codes that represented concepts within the data. Then, we constructed themes to describe experiences with social isolation and participation. We reviewed and refined themes iteratively to ensure that the themes accurately represented the collective experiences of the participants. Our iterative theme development process included active participation from all members of the study team, including the peer leaders, which strengthened the credibility of our findings. We maintained an audit trail of analytic memos and meeting notes to track important decisions and rationale for analytical choices to enhance dependability and confirmability. We referred back to the audit trail at critical points throughout the analysis to inform our decision-making.

The researchers involved in conducting this study and analyzing the data are all White female occupational therapists with experience in clinical and community TBI rehabilitation, as well as TBI rehabilitation research. We all share a passion for supporting community and social participation among people with disabilities and are invested in seeing this project inform community-based rehabilitation services. Furthermore, we all have an interest in understanding how a broad range of environmental factors influence participation outcomes for people with disabilities. We see the environment as an important component of the PEOP model that is often under-studied in TBI rehabilitation research, and this perspective informed our use of the PEOP model as a comprehensive framework for our analysis. All members of our team have experience in conducting qualitative research and community-based participatory research with people with TBI. The first author had an existing relationship with many members at the community program, including many of the focus group participants, built through prolonged engagement with the community program.

Results

We enrolled 12 participants with chronic TBI in this study. Their characteristics are described in Table 1. Participants had an average age of 47.1 (SD = 10.0) years, were equally split between male and female, were predominantly Black or African American (83.3%), and had diverse educational backgrounds. Two participants attended only two of the three focus group sessions, while the remaining participants attended all sessions.

Table 1.

Participant Characteristics.

Demographic Characteristcs	n = 12
Age, M(SD)	47.1 (10.0)
Sex, male, n(%)	6 (50)
Race/ethnicity, n(%)
Black/African American	10 (83.3)
White	1 (8.3)
Multi-racial	1 (8.3)
Hispanic	3 (25.0)
Education, n(%)
Less than high school	2 (16.7)
High school/General Education Development	6 (50.0)
Bachelor’s degree	3 (25.0)
Graduate degree	1 (8.3)

To describe participant experiences with social participation and social isolation since the start of the COVID-19 pandemic, we generated two themes: experience of social isolation and greater barriers but fewer strategies.

Theme 1: Experience of Social Isolation

Participants reported social isolation throughout the pandemic that continued to the time of the focus groups. We describe these experiences with two related sub-themes: (a) emotional impact and (b) managing personal risk.

Sub-Theme 1: Emotional Impact

Participants described feelings of loneliness at the start of the pandemic, which affected their mental health “It felt terrible . . . You couldn’t go nowhere, couldn’t do nothin.’ That was the hard part, just sittin’ in the house. You couldn’t go visit anybody cause they was sittin’ in the house, too” (ID10). They described few opportunities for socialization, worsened by a lack of access to their usual activities and environmental supports “I was going crazy. I like getting up and going out. And when it was closed, I didn’t have that option. So yeah, it was driving me nuts” (ID5). Furthermore, when they did get out and about for essential activities, mitigation plans and restrictions led to worse experiences and heightened occupational performance problems, “I had to go to the hospital by myself for my appointments. God” (ID10).

Remote socialization was identified as a lifeline to remain connected to others, but the quality of remote interactions was perceived to be worse than in-person interactions, “It’s much better in person. I mean it works when you do Zoom and things, but it’s not the same as being around someone” (ID4). Technology added a new environmental barrier that was difficult for participants to manage, and complicated the performance of previously easy and enjoyable occupations. Remote occupations represented a substantial performance change with significantly different task characteristics (finding technology, connecting to virtual services, managing remote social mechanics and dynamics) compared with usual in-person occupations. Thus, remote activities were not always pursued due to perceived complexity, nor were they always effective, for example, “I couldn’t go to school because they were doing it on Zoom. I tried to go to church on Zoom” (ID1). The challenges and lack of satisfaction related to remote social activities were insufficient to reduce the feelings of isolation participants experienced.

After the initial shutdown, participants described hesitancy returning to their usual activities, “[The] fear factor. Not wanting to be around people because you don’t know if they have [COVID] or not” (ID2). They also described lower satisfaction with social interactions because of social distancing, smaller groups participating in activities, fewer activity options, and masking and social distancing, “It was like, because it was a smaller group of people . . . and we couldn’t even sit with each other . . . we had to spread out, one here one over there” (ID6). At the community program specifically, participants reported feeling a sense of loss over long-time friends who have not returned to the program, “We had really good friends that used to come here. Well, I say really good friends, but I don’t know. How long have they been away now . . . we don’t even know if those people are alive or not alive” (ID12). Finally, participants reported that it was awkward and difficult to establish a new normal as they returned to some activities with their previous social contacts who they had not seen in a long time, “Seeing them after 2 years, it’s like ‘hi’—that awkward feeling” (ID6). Although opportunities for socialization have become more available than during initial shutdowns, participants identified a continued emotional impact and ongoing barriers to occupational performance.

Sub-Theme 2: Managing Personal Risk

Efforts to reduce personal risk not only enabled some socialization but also contributed to persistent social isolation. Participants placed a high value on masking, vaccination, and social distancing, which they felt enabled the return to some social activities safely. “Well with me, as I have four shots now, I feel much better for myself . . . It’s so important to stay up on the shots” (ID12). Some refused to interact with people who had not been vaccinated as a way of reducing their personal exposure risk, “They had to be vaccinated to come to the party. We had nobody who was not vaccinated” (ID10), which served to protect them, but also limited their options for social contact. Participants continue to actively rely on masking and expressed frustration that others have discontinued their masking practices, “I get so tired of telling people to pull their mask up. I say, I’m just going to let it be what it’s going to be. I’m going to protect myself. That’s all I can do” (ID4). Although efforts to manage personal risk were perceived as critical to protecting their safety, the lack of others’ embrace of these practices contributed to the negative emotional impact of the pandemic.

Hesitancy to return to social activities still persists. As participants have started to attempt social activities, they remain hesitant based on situations they perceived as unsafe. Participants reported an ongoing fear of exposure that continues to affect their social participation, “See I know what I been doing, I don’t know what they doing. Sitting down socializing with them, you gotta be kidding. You can’t socialize with them because you don’t know what they been doing. And they wanna get all up in your face. No, you gotta stand back” (ID10).

They report a persistent pattern of fewer social activities compared with before the pandemic “I was going to the health club like 3 or 4 times a week before, or walk in the park. I ain’t doin’ none of that now” (ID9). The prevailing perspective was that participants felt the need to think carefully about what they do and who they do it with, with a need to determine whether the risks are worth the benefit, “I need to think carefully about what I’m doing, where I’m at, who I’m around . . . I might say no to comin’ certain places, bein’ around 2 people, or any people who aren’t vaccinated yet . . . I don’t even wanna talk to em’” (ID7).

Overall, this has led to smaller social networks, fewer social activities, and lost relationships, “I deal with the ones who are important for me to deal with. The rest of em’, I just don’t deal with anymore” (ID10).

Theme 2: Greater Barriers But Fewer Strategies

Participants reported a range of barriers and supports to social participation, including many that were novel responses to the pandemic. It was notable that most of the strategies that participants identified for overcoming barriers to participation were those they had relied on prior to the pandemic; these did not adequately address new pandemic-related barriers. Barriers included new environmental barriers, loss of previously existing environmental supports, and changes to their occupations that limited their performance. The types of identified environmental barriers align with previously identified participation barriers for people with disabilities, including TBI, as reported by Hammel and colleagues prior to the onset of COVID-19: (a) economic and financial, (b) systems, services, and policies, (c) transportation, (d) physical (built and natural) environment, (e) assistive technology, (f) information and technology access, and (g) social supports and societal attitudes (Hammel et al., 2015). Both the ongoing and new challenges identified by our participants, and the strategies they identified to overcome them, are presented in Table 2. Here, we will discuss specifically those barriers that are new and resulting from the COVID-19 pandemic. We present these barriers as two sub-themes: (a) access and opportunities and (b) social and societal factors.

Table 2.

Environmental Barriers and Supports, Strategies.

Environmental domain	Barriers and supports	Participation strategies	Supporting quotes
Sub-theme 1: Access and opportunities
Economic/financial: individual and societal economic resources
Ongoing challenges	• Financial considerations remain important when planning activities	• Careful budgeting and planning• Separating money for different activities into different pots	“You always gotta have money.” (7)“Especially if you want to take your girl with you, you know, or your guy. You gotta have some money to spend some time with them. You don’t have no money, you can’t do nothin. You’re stuck.” (10) −
New challenges	—	—	—
Systems, services, policies: access to systems and services to support participation; influence of policy on participation
Ongoing challenges	• Inaccessibility of public spaces	• Research places in advance to investigate accessibility	“You need to call to find out if they’re [Americans with Disabilities Act] accessible.” (2) ST
New challenges	• Decline in access to community and health services• Vaccination and masking policies• Stay-at-home orders	• Using the community resources that are available• Universal vaccination mandate	“The other thing I missed was going, you know, to see my therapist every week but not going into his office. It’s like doing it on Zoom, you know, is not in person and it’s just not the same as that interaction.” (6) −“It should be their policy that you have to be fully vaccinated. They should make sure you’re fully vaccinated so the customers can feel comfortable. They can do it, too.” (9) ST“We should find out if the places we’re going if they’re going to have a mask. If it’s mandatory for everybody to wear a mask.” (2) ST
Transportation: public or private travel between locations
Ongoing challenges	• Bus fare is expensive and disability transportation is unreliable	• Budget carefully to make sure you have enough money to get home• Separating money for different activities into different pockets so there is enough for the ride home	“Putting money for different things in different pockets so you don’t overspend.” (4) ST
New challenges	• Transportation is now riskier, but also cleaner and less crowded	• Masking• Vaccination• Social distancing	“You know what’s crazy is I wouldn’t even get on the bus!” (1) −“I have to say I’ve never seen the [train] so clean. It was actually pretty clean, I was like, I’ve never seen it this clean before.” (6) +
Physical (built and natural) environment: factors in the human-made or natural environment
Ongoing challenges	• Inaccessibility of public spaces• Weather-related barriers	• Ensuring accessibility prior to choosing a venue	“Well all the right size [bowling] balls aren’t where we practice. We gotta walk down and dig around til we find em.” (3) -“Yeah, you can’t just go to a restaurant that’s too small and then the chairs don’t work for everyone. You have to be able to get around and you have to make sure it’s handicap accessible.” (12) -/ST“How are we going to go out right now when it’s getting cold? How are we going to get out?” (7) −
New challenges	• Safety in public spaces• Risk of exposure	• Masking• Vaccination• Social distancing	“I haven’t gone because I’m afraid of someone comin’ by me or whatever.” (12) −“Why would I go to the park to have a party there, then like I don’t know how long it takes for someone to come back with something.” (12) −
Assistive technology: access to specialized devices or products to support participation
Ongoing challenges	-	-	-
New challenges	• Zoom enables remote opportunities, but lower quality of interactions and challenges with use	• Use of Zoom for social interaction and participation	“Usually it’s like, hold on I need to put you on mute—can you turn the TV down dad?” (6) −“You could watch like, they have [exercise] on TV now, you could turn it to the station and follow the program. . . or online, you could find it on YouTube.” (11) ST
Information and Technology Access: devices and technology to access information
Ongoing challenges	• Need more reliable sources of information and recommendations	• Use of Google as a source of information• Use of helpful community resources	“And there’s a lot of people in the post office and the unemployment office and the social security office. They have information but you gotta figure out how to get in there. It’s always packed with people.” (10) −/+“All of us got phones, right? Everyone should have Google on their phones. You can just talk to it, say what you need, and it will help you find it.” (7) +/ST
New challenges	• Accessibility and limitations of Zoom	None identified	“They were doing [class] on Zoom online and I didn’t know how to get, you know, the hookup at home. And when teachers teach you, you have to catch it real quick. There’s no going over it like in person. So I couldn’t do it.” (1) −
Sub-theme 2: Social and societal barriers
Social Supports and Societal Attitudes: factors related to the availability of social networks and societal attitudes about disability or COVID-19
Ongoing challenges	• Need helpers to overcome personal limitations• Need supportive and understanding people around for encouragement	• Determining communication strategies depending on the context*	“Yeah so it’s kind of hard, you need two people really. . . [to carry] popcorn and potato chips and everything. This is kinda hard with one hand. So it’s best to have two people.” (3) −/+/ST“Like associates or friends around you who don’t have jobs. They don’t have a job and they don’t want you to have a job.” (7) −“Well sometimes when I’m trying to talk to you all and I’m stuttering. . . we’re talking and all of a sudden you don’t know what I’m talking about. . . don’t just say, oh right, and then move on because you don’t know. That brings me down.” (12) -“[Having] a good person that makes you want to do it. Somebody to help you and motivate you to get it done.” (10) +/ST
New challenges	• Fewer social contacts• Lack of contact with people at high risk• Discrimination• Lack of trust in others	• Thought for whether activities and people are worth the risk• Asking people to follow mitigation strategies• Avoiding people who are unvaccinated• Advocating for your needs and the needs of others*	“I get so tired of telling people to pull their mask up. I say, I’m just going to let it be what it’s going to be. I’m going to protect myself. That’s all I can do.” (4) −/ST“It’s because like, the waiter. . . he didn’t have on any type of mask or anything, like he was being loose with himself.” (8) −“I’m going to ask my waiter. . . excuse me, sir, do you know if the cooks back there have masks and gloves on?” (7) ST“I liked it being at home, you know? But they kept callin’—when are you comin’ back to the [program], when are you comin’ back? . . . and ma told me, she said you gotta leave here, you gotta go back” (1) +“I might say no to comin’ certain places, bein’ around 2 people, or any people who aren’t vaccinated yet. . . I don’t even wanna talk to em.” (7) ST

Note. − = barriers; + = supports; ST = strategies for participation.

*Identified by participants as a need for skill development.

Sub-Theme 1: Access and Opportunities

Participants reported a wide range of environmental barriers limiting their opportunities for social participation. These included:

a decline in access to community and health services that would support social participation or alleviate the effects of social isolation, “The other thing I missed was going, you know, to see my therapist every week but not going to his office. It’s like doing it on Zoom, you know, is not in person and it’s just not the same as that interaction.” (ID6)

stay-at-home and mitigation orders, and public or organizational policy that made participants feel unsafe in public places, “It should be their policy that you have to be fully vaccinated. They should make sure you’re fully vaccinated so the customers can feel comfortable. They can do it, too.” (ID9)

limited options for safe transportation to participate in social or community activities, “You know what’s crazy is I wouldn’t even get on the bus.” (ID1)

risk of exposure in public places or during social activities, “Why would I go to the park to have a party there, then like, I don’t know how long it takes for someone to come back with something.” (ID12)

inaccessibility and limitations of Zoom, “They were doing [class] on Zoom online and I didn’t know how to get, you know, the hookup at home. And when teachers teach you, you have to catch it real quick. There’s no going over it like in person. So I couldn’t do it.” (ID1)

Aside from masking, vaccination, and social distancing, participants identified few specific and effective strategies for managing these barriers. Strategies included researching masking rules in advance, “we should find out if the places we’re going to, if they’re going to have a mask, if it’s mandatory for everybody to wear a mask,” (ID2) and use of online opportunities for wellness activities, “you could watch like, they have [exercise] on the TV now, you could turn it to the station and follow the program. . . or online, you could find it on YouTube” (ID11). No strategies were identified for managing the challenges of online or remote opportunities. Furthermore, many of the identified strategies were discussed hypothetically, rather than identified as strategies that participants had implemented.

Sub-Theme 2: Social and Societal Barriers

Social support and broader societal attitudes were identified as both barriers and supports for social participation. Social support was identified as an important source of encouragement and information for participants, “I liked it being at home, you know? But they kept callin..’ . . when are you comin’ back [to the program]?. . . and ma told me, she said you gotta leave here, you gotta go back” (ID1). Still, participants suggested that they feel the need for more guidance to determine the best communication strategies to effectively use social support depending on the context of their situation.

Beyond individual social support, broader societal attitudes were among the most frequently identified barriers to participation. Frustrations with others who do not follow masking and social distancing recommendations in the community was prevalent, “It’s because like, the waiter . . . he didn’t have on any type of mask or anything, like he was being loose with himself” (ID8). Frequently, participants described a lack of trust in others to be truthful about the risk they brought to social situations, specifically their vaccination status. Participant 12 explains: “Let’s say you and I are in a room together. Neither of us have had any shots. I lie to you and say I had my shots, and you lie to me and say you had your shots. Neither of us had any shots at all,” (ID12). Reacting to this scenario, Participant 7 says, “it’s like playing Russian Roulette” (ID7). Participants identified few strategies for addressing societal barriers. Self-advocacy was occasionally identified, but participants suggested that they needed more skills to effectively advocate for their needs. Most often, the strategy to address societal barriers was to avoid others and limit activities and social contact.

Together, new environmental barriers have contributed to changes in performance of social occupations, and these occupational performance changes have contributed to the ongoing social isolation experienced by people with TBI.

Discussion

This study examined the experiences with social isolation and social participation among people with TBI since the start of the COVID-19 pandemic. We found that social isolation remains prevalent among our sample of people with chronic TBI in late 2022, even as pandemic-related policies had been relaxed and society had started to return to “normal.” Although social isolation is not a new problem for people with TBI, it is clear from this study that participants have not yet returned to their pre-pandemic levels of participation. Participants have not returned to many meaningful occupations, including school and exercise, limiting opportunities for personal advancement and health maintenance. They also continue to experience smaller social networks, fewer social activities, and reduced quality of relationships, furthering their social isolation.

Our findings support those of the few other studies examining social isolation among people with TBI during the pandemic, which also showed that social isolation was prevalent and problematic (Bellon et al., 2023; Goverover et al., 2022; Morrow et al., 2021). Our findings highlight that the experience of social isolation was not only heightened during the initial lockdowns but persisted even to a time when businesses had re-opened and masking and vaccination mandates had ended. Our study, in contrast to a study by Bellon and colleagues (2023), found that participants had not found effective strategies to overcome many of the new challenges. Bellon’s study included qualitative data from family members and care providers of people with TBI, while ours exclusively included people with TBI. It is possible that care providers identified and used their own strategies, while people with TBI did not. It is also possible that important demographic differences between the samples led to different results. Our sample was composed of people with low incomes and were predominantly from racial minority groups. It is possible that differences in environments, communities, available resources, and social and financial supports, generated differences in whether strategies were identified and effective.

Applying the PEOP model to these findings, our study suggests that this heightened level of social isolation may be tied to an increase in environmental barriers (safety concerns, limited access to information) a decrease in environmental supports (community resources, public transportation, social support), new values and priorities that affected their occupational performance, and added complexity to preferred occupations (management of technology and accessibility issues). Although many personal factors may not have changed, the changes in environmental factors and occupations appear to have affected the performance of social activities, and the reduced performance of social occupations contributed to greater social isolation. The mismatch between environmental barriers and the strategies that participants use to overcome those barriers appears to have widened during this time. Participants are facing greater environmental barriers without adequate strategies to overcome them, creating a greater imbalance in the person–environment fit and resulting in a change in occupational performance. In this study, participants were able to identify some strategies to achieve their social participation goals, but these were often out of their control (change airline policy), were unrealistic (personally monitor event attendees for vaccination status), or were identified hypothetically, rather than actively used as strategies. It was clear that participants had few effective strategies to enhance their social participation in the context of the ongoing pandemic.

Occupational therapy can play a role in addressing this new imbalance in the person–environment fit by guiding clients to develop or adapt strategies for goal achievement. Strategy training interventions have been found to enhance achievement of activity-based goals among people with acquired TBI (Dawson et al., 2013; McEwen et al., 2019; Skidmore et al., 2015). This approach focuses on iterative development and refinement of participation strategies, with guided application of strategies to specific meaningful occupations. Strategy training interventions provide the opportunity for people with TBI to develop practical, effective strategies for managing the environmental barriers related to social activities. Strategy training interventions are one tool that may contribute to improving the person–environment fit required for enhanced social participation.

Participants specifically identified two areas where they expressed a need for skill development: self-advocacy and communication skills. These skills could be leveraged to effectively use social support depending on the context. Based on these findings, rehabilitation interventions targeting social participation in the complex post-COVID environment should incorporate skill development in self-advocacy so clients can effectively ask for what they need, exert their rights, and request accommodations. Intervention may also need to focus on strategies to find, grow, and leverage social support.

Finally, Zoom was identified as an important means of safely staying connected with people and services. However, participants had low success and satisfaction with using Zoom. Clearer instructions, guidance, and support from videoconferencing platform services and internet service providers may improve accessibility and satisfaction with remote opportunities, which were generally perceived as safer. Rehabilitation intervention may also provide individualized training on the use of technology to enhance social participation. Although telehealth options have been growing rapidly since the start of the pandemic, people with TBI (in our study and others) have continued to express a preference for in-person interactions (Kringle et al., 2023; Rietdijk et al., 2022). Telehealth options offered to people with TBI must be specifically tailored to the person’s individual needs, resources, and capacity.

Limitations

All participants in this study were recruited from the same community-based program in Chicago and thus may share similar perspectives. Their perspectives were informed by their experiences in the Chicago area, which had more severe mitigation policies than some other regions. Furthermore, this study only included participants who had returned to activities at the community program. It is possible that experiences may be different among the group who have not re-connected with an important community support service and existing social network. This homogeneity of our sample limits the generalizability of our results to the broader population of people with TBI outside of this specific program and outside of Chicago.

That said, a strength of this study is the racially, educationally, and economically diverse sample. This study included participants with few resources and many barriers that may not have been identified by less diverse samples. This racially diverse sample was at a higher risk for severe COVID-19 or COVID-19-related death due to both race-based and disability-based discrimination and health inequities, which likely influenced their perspectives (Acosta et al., 2021; Johnston & Pollack, 2023). These are critical perspectives to examine, as they represent those who have the greatest risks and the most to gain from stronger community supports and rehabilitation intervention.

Conclusion

We examined experiences with social isolation among people with TBI in the late stages of the pandemic (July-October 2022) using the PEOP model as a framework. We found that people with TBI continued to experience heightened social isolation, with a detrimental emotional impact. They remained concerned about returning to social activities and continued to limit their social contacts. Furthermore, they reported greater environmental barriers to performance of social activities, including issues with access and opportunities, and social and societal barriers. These new barriers disrupted the person–environment fit, culminating in greater occupational performance problems and, thereby, greater social isolation. Participants had identified and used few strategies to effectively manage these new barriers, suggesting a need for greater occupational therapy services focused on strategy development for social participation.

Supplemental Material

sj-jpg-1-otj-10.1177_15394492241233260 – Supplemental material for Ongoing Challenges Related to the COVID-19 Pandemic Among People With Brain Injury

Supplemental material, sj-jpg-1-otj-10.1177_15394492241233260 for Ongoing Challenges Related to the COVID-19 Pandemic Among People With Brain Injury by Jessica Kersey, Amy R. McArthur and Joy Hammel in OTJR: Occupational Therapy Journal of Research

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was approved by the University of Illinois Chicago Institutional Review Board #2017-0797.

Research reported in this publication was supported by the National Institutes of Health under award number UL1 TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

ORCID iD

Jessica Kersey

Supplemental Material

Supplemental material for this article is available online.

References

Acosta

A. M.

Garg

Pham

Whitaker

Anglin

O’Halloran

Milucky

Patel

Taylor

Wortham

Chai

S. J.

Kirley

P. D.

Alden

N. B.

Kawasaki

Meek

Yousey-Hindes

Anderson

E. J.

Openo

K. P.

Weigel

. . . Havers

F. P.

(2021). Racial and ethnic disparities in rates of COVID-19–associated hospitalization, intensive care unit admission, and in-hospital death in the United States from March 2020 To February 2021. JAMA Network Open, 4(10), e2130479. https://doi.org/10.1001/jamanetworkopen.2021.30479

Annaswamy

T. M.

Verduzco-Gutierrez

Frieden

(2020). Telemedicine barriers and challenges for persons with disabilities: COVID-19 and beyond. Disability and Health Journal, 13(4), 100973. https://doi.org/10.1016/j.dhjo.2020.100973

Baum

M. C.

Christiansen

C. H.

Bass

J. D.

(2015). The Person-Environment-Occupation-Performance (PEOP) model. In Christiansen

C. H.

Baum

C. M.

Bass

J. D.

(Eds.), Occupational therapy: Performance, participation and well-being (4th ed., pp. 49–56). SLACK Incorporated.

Bellon

Idle

Lay

Robinson

(2023). Community in the pandemic: Experiences and strategies by people with acquired brain injury and their families during COVID-19. Disability and Rehabilitation, 45(6), 1038–1045. https://doi.org/10.1080/09638288.2022.2049377

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Braun

Clarke

(2022). Thematic analysis: A practical guide. Sage.

Dawson

D. R. A.

Binns

Hunt

Lemsky

Polatajko

H. J.

(2013). Occupation-based strategy training for adults with traumatic brain injury: A pilot study. Archives of Physical Medicine and Rehabilitation, 94(10), 1959–1963. https://doi.org/10.1016/j.apmr.2013.05.021

Goggin

Ellis

(2020). Disability, communication, and life itself in the COVID-19 pandemic. Health Sociology Review, 29(2), 168–176. https://doi.org/10.1080/14461242.2020.1784020

Goverover

Kim

Chen

M. H.

Volebel

G. T.

Botticello

DeLuca

Genova

H. M.

(2022). The impact of the COVID-19 pandemic on engagement in activities of daily living in persons with acquired brain injury. Brain Injury, 36(2), 183–190.

10.

Hammel

Magasi

Heinemann

Gray

Stark

Kisala

P. A.

Carlozzi

N. E.

Tulsky

D. S.

Garcia

Hahn

E. A.

(2015). Environmental barriers and supports to everyday participation: A qualitative insider perspective from people with disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 578–588. https://doi.org/10.1016/j.apmr.2014.12.008

11.

Hammel

Magasi

Heinemann

Whiteneck

Bogner

Rodriguez

(2008). What does participation mean? An insider perspective from people with disabilities. Disability and Rehabilitation, 30(19), 1445–1460. https://doi.org/10.1080/09638280701625534

12.

Holt-Lunstad

Robles

T. F.

Sbarra

D. A.

(2017). Advancing social connection as a public health priority in the United States. American Psychologist, 72, 517–530. https://doi.org/10.1037/amp0000103

13.

Israel

B. A.

Schulz

A. J.

Parker

E. A.

Becker

A. B.

(1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173–202. https://doi.org/10.1146/annurev.publhealth.19.1.173

14.

Johnston

K. J.

Pollack

H. A.

(2023). COVID-19 reveals longstanding health inequities and discrimination against Americans with disabilities. Medical Care, 61(2), 55. https://doi.org/10.1097/MLR.0000000000001810

15.

Kersel

D. A.

Marsh

N. V.

Havill

J. H.

Sleigh

J. W.

(2001). Psychosocial functioning during the year following severe traumatic brain injury. Brain Injury, 15(8), 683–696. https://doi.org/10.1080/02699050010013662

16.

Kersey

Terhorst

C.-Y.

Skidmore

(2019). A scoping review of predictors of community integration following traumatic brain injury: A search for meaningful associations. The Journal of Head Trauma Rehabilitation, 34(4), E32–E41. https://doi.org/10.1097/HTR.0000000000000442

17.

Kringle

E. A.

Skidmore

E. R.

Baum

M. C.

Shih

Rogers

Hammel

J. M.

(2023). Stakeholders’ experiences using videoconferencing for a group-based stroke intervention during COVID-19: a thematic analysis. American Journal of Occupational Therapy, 77(3), 7703205100. https://doi.org/10.5014/ajot.2023.050111

18.

Lund

E. M.

Forber-Pratt

A. J.

Wilson

Mona

L. R.

(2020). The COVID-19 pandemic, stress, and trauma in the disability community: A call to action. Rehabilitation Psychology, 65(4), 313–322. https://doi.org/10.1037/rep0000368

19.

McEwen

S. E.

Donald

Jutzi

Allen

K.-A.

Avery

Dawson

D. R.

Egan

Dittmann

Hunt

Hutter

Quant

Rios

Linkewich

(2019). Implementing a function-based cognitive strategy intervention within inter-professional stroke rehabilitation teams: Changes in provider knowledge, self-efficacy and practice. PLOS ONE, 14(3), Article e0212988. https://doi.org/10.1371/journal.pone.0212988

20.

Milders

(2019). Relationship between social cognition and social behaviour following traumatic brain injury. Brain Injury, 33(1), 62–68. https://doi.org/10.1080/02699052.2018.1531301

21.

Mohatt

N. V.

Kreisel

C. J.

Brenner

L. A.

(2021). Engaging those living with mdoerate to severe TBI and their caregivers in research. Journal of Patient Experience, 8, 1–7.

22.

Morrow

E. L.

Patel

N. N.

Duff

M. C.

(2021). Disability and the COVID-19 pandemic: A survey of individuals with traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 102(6), 1075–1083. https://doi.org/10.1016/j.apmr.2021.01.064

23.

Rietdijk

Power

Attard

Togher

(2022). Acceptability of telehealth-delivered rehabilitation: Experiences and perspectives of people with traumatic brain injury and their carers. Journal of Telemedicine and Telecare, 28(2), 122–134. https://doi.org/10.1177/1357633X20923824

24.

Sabatello

Burke

T. B.

McDonald

K. E.

Appelbaum

P. S.

(2020). Disability, ethics, and health care in the COVID-19 pandemic. American Journal of Public Health, 110(10), 1523–1527. https://doi.org/10.2105/AJPH.2020.305837

25.

Scientific Software Development GmbH. (2022). ATLAS.ti (ATLAS.ti 22 Windows) [Computer software]. https://atlasti.com/

26.

Skidmore

E. R.

Dawson

D. R.

Butters

M. A.

Grattan

E. S.

Juengst

S. B.

Whyte

E. M.

Begley

Holm

M. B.

Becker

J. T.

(2015). Strategy training shows promise for addressing disability in the first 6 months after stroke. Neurorehabilitation and Neural Repair, 29(7), 668–676. https://doi.org/10.1177/1545968314562113

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.13 MB