“You’re Left on Your Own”: A Qualitative Study on the Experiences of Community Integration After Traumatic Brain Injury

Abstract

Background: Achieving meaningful community integration (engagement in meaningful activity, independent living, and social connectedness) after a traumatic brain injury (TBI) requires addressing persistent barriers limiting its fulfillment. This qualitative study explored the perceptions and experiences of community integration for individuals living with TBI in the community. Methods: Using semi-structured interviews, four focus groups of individuals with TBI were conducted. Data were analyzed using codebook thematic analysis. Findings: There were 13 participants between the ages of 25 and 64, who had acquired their injury at least three years earlier. Community integration was illustrated through three themes: (1) ‘Am I left on my own?’ explored the support systems after TBI, (2) ‘One size fits all’ described the response of society to TBI, and (3) ‘Adapting to a new normal’ highlighted responses to a changed reality. Conclusions: Individuals with TBI reported decreased community integration in multiple facets of life. Understanding the experiences of community integration after TBI can create room for future rehabilitation interventions that consider new abilities and adaptation to barriers.

1. Introduction

Brain injury is the world’s leading cause for death and disability [1]. People with traumatic brain injury (TBI) can experience life-long impacts due to functional impairments and environmental, social, and policy barriers [2,3]. For example, cognitive (e.g., memory difficulties) and physical (e.g., balance issues) deficits after TBI can reduce participation in daily activities. Environmental barriers can limit participation through inaccessible spaces (e.g., stairs, lack of signage) at home, work, or in the community [3]. Experiencing environmental barriers after a TBI can lead to lower social participation and restricted involvement in personally meaningful activities [4]. As a result of reduced participation, people with TBI can experience lower community integration.

Community integration is a multifaceted concept. Community integration can be broadly defined as participating in meaningful activities within a community context [3] using individual, cultural, and dynamic lenses [5,6]. Sander et al. [7] conceptualized community integration after TBI as entailing three main components: engagement in meaningful and productive activity, independence in living, and relationships with others. After TBI, community integration can be negatively impacted by injury-related (e.g., longer duration of post-traumatic amnesia), functional (e.g., reduced abilities), and environmental (e.g., low social support and social participation) factors [6,8]. As the concept of community integration is complex in nature, the needs and priorities of life after TBI should be considered.

People with TBI continue to experience reduced community integration, despite evidence to support the importance of community integration as a rehabilitation goal [9]. People report experiencing limited supports to improve community integration and difficulty accepting a new reality of changed abilities [10]. Further, qualitative research on experiences of community integration less than one year after TBI identified individuals feeling unsupported and confused and difficulty transitioning between units, hospitals, and home [9].

Community integration is a priority following brain injury, as it impacts quality of life [10,11]. While rehabilitation interventions aimed at improving community integration are effective, most research approaches used quantitative methods or consensus frameworks [2,12]. The full diversity of community integration experiences and how it can change over time remains a gap in understanding.

Understanding the experiences of community integration for individuals who are living in the community can provide key insights to identify gaps in service or highlight facilitators in current interventions, informing policy and practice. Perspectives of community integration are important to explore, as long-term low community integration has been found after TBI [13,14]. The present study aims to qualitatively explore perceptions and experiences of community integration after TBI, using the definition from Sanders et al. [7] as a framework.

2. Materials and Methods

2.1. Design

This study used a qualitative descriptive approach [15]. Data were obtained for secondary analysis from focus groups from a larger mixed-methods study that explored quality of life priorities after TBI [16]. Ethics approval was obtained from the University of British Columbia’s (UBC) Research Ethics Board. Data were reported in line with the COnsolidated criteria for REporting Qualitative research [17].

2.2. Participants

Adults with moderate to severe TBI were recruited through convenience sampling in British Columbia, Canada. Recruitment was conducted by posting study advertisements within the GF Strong Rehabilitation Centre and circulating them online through the British Columbia Brain Injury Association and three other local British Columbia brain injury organizations. Participants were included if they (1) were between the ages of 18 and 64; (2) sustained a moderate to severe TBI at any time point (self-reported); and (3) could communicate in English. Individuals with mild TBI were excluded due to the different long-term outcomes and rehabilitation goals of mild brain injuries. Informed consent was obtained from all participants.

2.3. Data Collection

Data collection took place from November to December 2022 and in December 2023. Of the 34 individuals who were contacted, 13 participated in the study. Those who did not participate either declined when invited or did not respond to the invitation. A semi-structured interview guide on factors affecting people with TBI was developed in collaboration with patient-partners with lived experience of TBI [16]. Four focus groups were conducted online via Zoom and comprised three or four participants in each group. Focus groups were approximately 60 min in length and explored lived experiences of life after TBI.

Three researchers were facilitators for this study and received training from the principal investigator (J.S.) on how to conduct focus groups with people with TBI. Each focus group interview was facilitated by two researchers (J.S. and J.G.). All facilitators had prior experience of working with people with TBI. There were no previous relationships between the participants and facilitators. Participants were informed of the facilitators’ backgrounds and the aims of the interview. Participants received a CAD 30.00 honorarium for taking part in the study.

2.4. Data Analysis

Interviews were audio- and video-recorded and transcribed verbatim. Personal information was removed and replaced with pseudonyms. Focus group transcripts were analyzed using codebook thematic analysis [18] and NVivo 14 software. First, J.S. and J.W. thoroughly read all transcripts to familiarize themselves with the data. JS then conducted line-by-line coding on transcripts for the first two focus groups. This was done by labeling segments of the data with codes using a deductive approach guided by Sander et al. [7]’s three components of community integration (employment/productive activity, independent living, social activity. Next, using an iterative approach, J.S. and J.W. reviewed, discussed, and synthesized the codes into a codebook. Disagreements between the two coders were resolved via discussion and revision of the codes and their definitions. J.W. then used the codebook to code the remaining two focus groups.

All authors discussed and grouped related codes of meaningful patterns using an iterative approach and collaboratively generated, refined, and named the main themes to represent the data. Trustworthiness strategies of reflexivity were employed through debriefing sessions between the principal investigator (J.S.) and facilitators after each focus group. Additionally, to ensure comprehensive and robust interpretations of the data, the authors held several meetings to discuss and incorporate the perspectives of multiple investigators with diverse personal and occupational backgrounds [19,20].

2.5. Positionality

Focus groups were facilitated by three females. Two facilitators were research assistants and undergraduate students in health sciences at UBC, with East Asian and Caucasian backgrounds. The third facilitator (J.G.) was a rehabilitation sciences graduate student at UBC and an occupational therapist with a South Asian background. Data analysis was conducted by J.S. and J.W. J.S., female, was an assistant professor at UBC and an occupational therapist with a Caucasian background. J.W., female, was a postdoctoral fellow at UBC with a neuropsychology background from South Africa.

3. Results

Thirteen people who acquired a moderate to severe TBI participated in this study (

Table 1. Demographic Characteristics of the Current Sample (n = 13).

Participant ID	Age (Years)	Time Since Injury (Years)	Gender Identity	Employment Status
P1	35 to 39	5 to 9	Man	Unemployed
P2	55 to 59	5 to 9	Woman	Unemployed
P3	45 to 49	15 to 19	Man	Disability assistance
P4	55 to 59	10 to 14	Woman	Part-time employment
P5	55 to 59	3 to 4	Woman	Disability assistance
P6	60 to 64	10 to 14	Woman	Disability assistance
P7	50 to 54	15 to 19	Man	Disability assistance
P8	40 to 44	10 to 14	Woman	Part-time employment
P9	60 to 64	More than 20	Man	Disability assistance
P10	35 to 39	More than 20	Woman	Part-time employment
P11	50 to 54	10 to 14	Woman	Part-time employment
P12	25 to 30	5 to 9	Man	Unemployed
P13	45 to 49	More than 20	Man	Disability assistance

). Participants were between the ages of 25 and 64 and had acquired the TBI at least three years earlier. Six men and seven women took part. Experiences of community integration were illustrated through three themes: (1) ‘Am I left on my own?’ explored the support systems available after TBI, (2) ‘One size fits all’ described the response of society to TBI, and (3) ‘Adapting to a new normal’ highlighted the response of participants to a changed reality.

3.1. Theme 1: Am I Left on My Own?

The first theme described the impact of support systems on community integration after sustaining a TBI. This theme includes two sub-themes: (1) systemic gaps and (2) revealing relationships.

3.1.1. Subtheme 1a: Systemic Gaps

Participants outlined issues and problems within the system of financial and rehabilitation support after TBI. Participants expressed that changes to their employment status after the TBI resulted in financial constraints that impacted their engagement in social activities. Some participants reported limited participation, as they could no longer engage in monetary-based activities with friends: “I do find that they’re [friends are] kind of in a different pay grade than I am, so a lot of their activities have a price tag attached to them, which I’m just not able to [participate in]” (P2, 55- to 59-year-old woman). On the other hand, some participants developed strategies for community integration by engaging in activities with lower financial constraints: “There was a point in my recovery where I had no financial support. One strategy I used was to research what is out there that I can do for free. I would find outdoor movies, and invite my friends” (P8, 40- to 44-year-old woman).

Participants reported a loss of rehabilitation support once they were discharged from hospital. This negatively impacted their transition to independent living and return to work:

That initial six months post-injury, once I was discharged from hospital and did intensive physio and rehabilitation, I was ‘dropped’ for lack of a better term. Simply because the demand for those resources is so high, there’s so many people who need those supports. Additional supports for that transition home could’ve made that smoother, and additional supports into the work environment.

(P12, 25- to 30-year-old man)

However, a few participants talked about receiving ongoing support. For example, P8 (40- to 44-year-old woman) discussed medical, professional development, and financial support from their employer:

The type of employment I have provides me with the type of medical coverage I need to get incredibly advanced healthcare and private healthcare to help my healing. I’m also very lucky that my employment affords me the opportunity to educate myself so that I can find a way to make myself invaluable so that employers do want to accommodate me. It also provides me with long-term disability, so if I ever had to go off, at least I would have finances.

Another participant explained, “I myself am on the opposite side of the spectrum. I’ve been supported since day one with all the various therapies, and they continue to fully support me to this day.” (P7, 50- to 54-year-old man)

3.1.2. Subtheme 1b: Revealing Relationships

Participants described physical and environmental sensitivities after their TBI that were misinterpreted by the individuals around them. For example, in relation to engaging in social activities, P5 (55- to 59-year-old woman) expressed:

I’m still very sensitive to noise and environments and fatigue. People don’t necessarily understand because they think, ‘oh, it’s been a while, you’re better and you seem okay on the outside’. I would try and see friends for lunch or coffee and then have to cancel because I wasn’t feeling well. I was too dizzy.

Similarly, P8 (40- to 44-year-old woman) stated, “You’re noise sensitive, you’re light sensitive, you’re fatigued. Then you try and go and socialize and you feel frustrated and overwhelmed and overstimulated”. These misunderstandings revealed issues participants experienced from pre-injury relationships: “Yeah, get sick and find out who your friends really are. People got tired of inviting me to do things. Or arriving somewhere and the travel was all I could do. I’d have to sit somewhere quiet to recuperate.” (P2, 55- to 59-year-old woman)

Some participants reported that pre-injury relationships provided unwavering support. For example, P1 (35- to 39-year-old man) discussed ongoing support from family: “Family support’s been huge. My mom has been great. She helped furnish the place I’m living in now, and has just been carefully stepping [guiding] me along every step of the way, and listening, too”. Similarly, P8 (40- to 44-year-old woman) highlighted ongoing support from a close friend: “One relationship that comes to mind and I feel really, really grateful for is my best friend. She knew me before the injury, and she has stood by my side during and after”.

3.2. Theme 2: One Size Fits All

The second theme illustrated the impact of societal expectations on participants when they integrated back into the community after their injury. This theme includes two sub-themes: (1) intolerance for difference and (2) misguided prejudice.

3.2.1. Subtheme 2a: Intolerance for Difference

Participants reported on encounters where they experienced stigma due to their disability. For example, P3 (45- to 49-year-old man) spoke about difficulties when securing meaningful and supported work:

I found work challenging, especially after short-term memory loss. Misreading cues does not make for a happy retail employee. What I was able to do when I left work was something like retail or entry level, but working at any store is hard. I was met with bosses that were uncooperative, people that realize that there’s a lot of effort that goes into being with somebody with a brain injury.

Similarly, P13 (45- to 49-year-old man) shared their experience of growing up and living with their disabilities: “I grew up as a brain injured child, and it was never recognized. Because my disabilities didn’t fall into a visible disability or into a silo of other disabilities, people just thought I was lazy”.

3.2.2. Subtheme 2b: Misguided Prejudice

Participants described experiences of assumptions from the community due to the invisible effects of the TBI, and how it impacted independent living and employment activity. This was particularly evident when participants were within a public domain (e.g., using the public transit system). For example, P2 (55- to 59-year-old woman) discussed how they needed to show proof of their injury to secure a seat on the bus:

People just don’t get it. We look fine, even getting on the bus. I absolutely cannot stand on the bus. Do you think any kids will move out of the handicapped spots? No, I have to ask the bus driver. And even the bus driver looks at you like, well, you look fine. I have to carry my handy pass with me to prove that I actually really do need a seat.

In addition, participants reflected that these prejudices resulted in their experience of discrimination and oppression. For example, P8 (40- to 44-year-old woman) noted an experience in the workplace: “Through my employment, I have experienced a lot of oppression and discrimination and bullying in regards to injury. And it’s tough, because people will say things at work about persons with brain injury and it just breaks my heart”. Similarly, P10 (35- to 39-year-old woman) noted this experience during their formative years: “My speech problems were highly defective with it [the TBI], so growing up I was of course really bullied for it”. Some participants suggested solutions to address these prejudices, as conveyed by P8 (40- to 44-year-old woman): “Education and awareness to the general population to reduce the impact of being stigmatized and discriminated against”.

3.3. Theme 3: Adapting to a New Normal

The third theme depicted how owning a new reality impacted community integration after sustaining a TBI. This theme includes two sub-themes: (1) embracing the present and (2) taking charge.

3.3.1. Subtheme 3a: Embracing the Present

Participants reflected on ways to make the most of their new reality, which impacted social, employment, or productive activity. Strategies were implemented to accommodate cognitive difficulties by engaging in social activities at their own pace:

I’m going out for one hour to socialize today and that is it. I would chunk it so it was easy and doable. And it started slow, like for one hour. I can sit there and be in the room with someone else, but I can’t talk to them because I can’t focus or concentrate. Then I just built and built and built.

(P8, 40- to 44-year-old woman)

Some participants also strategized to find ways to facilitate social engagement. For example, P13 (45- to 49-year-old man) noted that their pets provided an opportunity to initiate conversation with new people: “When I go places, I’m with my dogs. And people want to talk to me about my dogs. They don’t notice my brain injury”.

Participants found meaning, purpose, and drive through opportunities that provided new skills. For example, P4 (55- to 59-year-old woman) stated that “[I] got into a program and they gave me cooking lessons. So now I’m a cook. And I work with high school students. I love it”. P9 (60- to 64-year-old man) provided another example: “[I] found out about a ski program for people with brain injuries. It’s just gotten bigger and at this point, I’m an instructor. I’ve worked with just about any kind of disability you can think of”. Some participants attended programs to learn new skills: “I have found a couple things I’m actually quite gifted, intuitively, psychically. I’ve learned to do some energy healing. I got super courageous and I just took the course.” (P2, 55- to 59-year-old woman)

Participants also reflected on how they experienced meaning through volunteer work that involved supporting peers with brain injury. For example, P12 (25- to 30-year-old man) talked about a reciprocal relationship where both themselves and the people they supported benefited from the connection:

A big part of my volunteer work has been providing bedside support to patients who have suffered a brain injury. And it’s been a very empowering and fulfilling part of my recovery as well. It goes both ways where for me, being able to reflect on how far I’ve come and also provide support to someone who’s just beginning their journey.

This was echoed by P13 (45- to 49-year-old man): “I’ve done some volunteering and I’m a big peer support person. I value my time with my peers who have suffered brain injuries”.

3.3.2. Subtheme 3b: Taking Charge

Participants indicated how they assumed control of their new reality, to facilitate their independent living and social activity. Participants reflected that they needed to be their own advocates for their needs. For example, P3 (45- to 49-year-old man) discussed advocating for rehabilitation support:

I felt that once everything stopped, the speech pathology and you’ve used up your lessons, you’re left on your own, and that was a real challenge for me. Finding and learning that I need to be my own advocate. And I really need to fight hard for what I wanted.

P13 (45- to 49-year-old man) also noted, “I find we have to be our own advocate and that is often really difficult to do. It’s hard to know who to reach out to at what time”.

Participants recalled how they found acceptance and value in new friendships, by engaging and socializing with people with shared lived experiences. For example, P8 (40- to 44-year-old woman) conveyed:

What really brings me value is engaging in activities or engaging with persons where I’m seen for more than the injury. When I’m seen for who I am and not just labeled as the injury. I developed relationships and friendships with persons who could really relate and empathize with what I was going through and what my needs were.

Likewise, P13 (45- to 49-year-old man) reported, “I’ve made some really good friends over the years. Some of them I’ve traveled internationally with pre-COVID. And it’s so weird that our common characteristic is our brain injury. We all come from very different lives, very different backgrounds.”

4. Discussion

Findings from our exploratory study identified three themes of participant experiences relating to engaging with support systems, public perception, and advocating for needs after TBI. These themes aligned with Sander et al. [7]’s three components of community integration: meaningful employment/activity, independent living, and social connectedness.

Participants in our study reflected on the difficulties of community integration in both the initial transition with employment and relationships and participation within public settings. This finding aligns with previous literature, as qualitative studies have indicated problems accepting a new reality less than one year after brain injury [9,10]. Quantitatively, long-term follow-up of community integration for veterans and civilians who experienced a TBI indicated a large gap in community integration [13,14]. It should be noted community integration is typically measured using results from groups with large variation, rather than individual accounts, therefore creating a need to understand individual experiences of community integration [14].

Findings from the first theme, “am I left on my own?”, highlighted the barriers of institutional support systems (i.e., unemployment and healthcare). Previous research indicates that people with moderate to severe TBI have barriers to financial stability, such as obtaining and sustaining employment [21]. In particular, Gormley et al. [21] found only 42% of those who experience a moderate to severe TBI return to work. Individuals with TBI can experience a lack of community after unemployment, as well as financial stressors leading to a decline in mental and physical health [22]. The absence of monetary support from employment and the reduced access to social settings that require money can result in social isolation.

Some participants in our study experienced isolation from healthcare supports when transitioning from hospital settings. Participants indicated they received limited healthcare support after their injury, though others expressed sufficient support. Access to healthcare for people with brain injury beyond the acute period differs depending on multiple factors, including type of injury, insurance, where they are receiving care (e.g., urban or rural, inpatient or outpatient), and if their social network can support them [23,24,25]. Indeed, some people with TBI may experience little to no rehabilitative care after an acute hospital stay [16].

Participants in our study identified experiencing isolation due to the inaccessibility of their built environment. The built environment can determine the capacity to engage in community activities [3]. Participants in our study identified that environmental sensitivities caused a barrier in community integration, but can be used as a catalyst for deeper social support for those understanding of the participant’s new sensitivities.

The second theme, “one size fits all”, explored public misunderstanding of disabilities and the navigation of public spaces after TBI. Previous research aligns with our findings, identifying social and physical environmental barriers that negatively influence community integration after TBI [4]. Additionally, our findings indicate participants experienced prejudice particularly in the workplace, where supports and services were not given, or abilities were not understood. In keeping with current research, the experience of decreased social participation, such as leaving the workforce, increased instances of perceived stigma after TBI [26].

The third theme, “adapting to a new normal”, discussed conscious decisions of accepting and taking action within their new reality to engage in social, employment, or productive activity. Self-perception and action, such as advocating for needs, could be a reason for positive perceptions of community integration. Aligning with our findings, Winkler et al. [27] identified level of disability, number of close friends, and loss of emotional control as significant predictors of poor community integration.

Rehabilitation strategies can be influenced by creating an understanding of community integration perspectives from both acute and community experiences of TBI. Our findings indicated limited supports for community integration after TBI, especially for individuals living in the community. Access to resources and supports can decrease perceived barriers to community integration [26]. Rehabilitation strategies to facilitate community integration can be individualized, tailoring the needs of the person with lived experience to the environment and culture to which they are returning. However, as formal rehabilitation healthcare services (e.g., occupational therapy and physical therapy) are often limited after hospitalization, there is a greater need for services in the community to support people with TBI [28]. Indeed, community programs facilitated by non-profit organizations are often the only service available for people after TBI. Community organizations often facilitate support groups and peer-mentoring to improve self-acceptance, satisfaction, and social participation, thereby increasing community integration [29,30]. Rehabilitation strategies in conjunction with community organizations can assist in the facilitation of community integration after TBI.

Limitations

This study provides valuable insight into the perspectives of community integration after experiencing a moderate to severe TBI, with three limitations. Firstly, participants were recruited from brain injury associations within British Columbia, Canada. Brain injury associations typically offer programs to support clients; therefore, it cannot be determined if participants’ experiences can be generalized to the broader TBI population. Though participants may have been connected to a brain injury association at the time of recruitment, they could have reflected on times in their recovery journey when they were less supported.

Secondly, participants were recruited if they had access to technology, as the larger study required the completion of an online questionnaire [16]. Those who had limited access or ability to use technology may have been excluded. As such, those with access to online support may have further benefited than those who rely on in-person supports.

Thirdly, the researchers’ positionality (e.g., occupational background) may have influenced the way data were collected and analyzed. For example, prior knowledge of community integration experiences after TBI may have shaped the types of follow-up questions that were asked during the focus group interviews. However, steps were taken throughout the data collection and analysis process to reduce bias, such as debriefing after focus groups, reviewing and refining the codebook, and including multiple perspectives from researchers with different occupational backgrounds.

5. Conclusions

Findings indicate that community integration after TBI should consider new abilities and ways to adapt to overcome barriers. Research and clinical practice may benefit from understanding that community integration is a continuous, dynamic, and personal experience. Individualized approaches to community integration in rehabilitation are needed. Future research can build on our findings, by continuing to evaluate the individual impacts of community integration, to further develop rehabilitation programs.