A Look at Traumatic Brain Injury Community Programs in British Columbia: Barriers and facilitators of implementation

ABSTRACT

Research Objectives

1) Characterize the delivery of programs that support acceptance and resiliency for people with brain injury in the healthcare sector; 2) Understand the barriers and facilitators in implementation of programs to support self-acceptance and resiliency for people with brain injury

Design

Participatory focus groups were used to explore experiences of conducting brain injury programs and knowledge of the barriers and facilitators to their implementation. Focus group data were analyzed with manifest content analysis to minimally deviate from broad and structural information provided by participants.

Setting

Four focus group sessions were conducted online through a video calling platform.

Participants

22 individuals from community associations conducting programs for people with brain injury. Participants were recruited from a public brain injury organization database.

Results

Systemic challenges such as access to and allocation of funding require navigation support. Resource consistency and availability, including stable program leaders and a welcoming atmosphere, are important for program implementation and sustainability. Shared experiences promote connection with the community and personal development.

Conclusions

This study informs individual- and community-level approaches to promote meaningful life after brain injury. Findings highlight existing resources and support future programming for people with brain injury.

KEYWORDS:

• Acceptance
• resiliency
• brain injury
• implementation
• occupational therapy
• rehabilitation

Introduction

Traumatic brain injury (TBI) is a global health priority and primary cause of injury-related death and disability (1,2). In Canada, over 20,000 people are hospitalized due to TBI per year (3). Following a TBI, people can experience changes in cognition such as reduced attention and memory, and changes in physical ability such as impaired balance and mobility (4,5). As such, TBI can alter one’s social participation and activity engagement, which can directly influence their meaning and quality of life (6–9).

People with TBI can experience changes in participation due to injury-related impairments or social constraints in the environment (10,11), which may cause feelings of fragmentation, anxiety, and depression (12). However, individuals can develop self-acceptance and establish new meaning in life after TBI (13–15). This process can be a powerful motivating force (16) that can contribute to the development of resiliency and self-acceptance (17–19).

Theoretical and empirical evidence describe the importance of developing resiliency and self-acceptance after brain injury to promote improved quality of life and well-being. Resiliency describes one’s ability to adapt and positively respond to adversity (19–21), with evidence showing a positive relationship between resiliency and both subjective and objective well-being among adults with moderate-to-severe TBI (20). Additionally, self-acceptance refers to one’s ability to view themselves as valued and their disability as one of their many characteristics (7), with evidence showing decreased self-acceptance associated with depression and low quality of life (22). Engaging in activities that provide meaning and value, however, can improve a person’s self-acceptance and resiliency after TBI and thus their well-being and sense of capability (22).

There are interventions to improve self-acceptance and resiliency for people after TBI (23–25) including peer support programs, group therapy, and therapeutic approaches. May and colleagues (26) investigated a peer-led program with people with stroke, noting that participants were able to build self-efficacy and explore their potential through shared experience. A group therapy intervention from Sathananthan et al. (27) enhanced behaviors of valued living, and another by Hoepner and colleagues (28) improved sense of self and identity across participants. Domensino and colleagues (29) found that their holistic neuropsychological rehabilitation program enabled individuals with TBI to feel better able to adapt to daily tasks and life events. Various approaches to self-acceptance and resiliency development have been investigated and are appropriate for use in community practice.

In Canada, healthcare services have traditionally been delivered by a range of providers including public bodies, nonprofit organizations and private businesses (30). Current evidence about programs for people with brain injury emphasize government-funded initiatives for early recovery phases (31,32). In comparison, programs and services conducted by fee-for-service or nonprofit community organizations provide the majority of long-term and post-acute TBI care (33,34), yet evidence about them is limited. Leisure activities are important for rebuilding life skills and personal capacities (35) but are also minimally discussed (36). These gaps in literature may result from ongoing views of rehabilitation as limited to the clinical, therapeutic interventions delivered during acute/sub-acute phase of recovery (37). For example, Salas and colleagues (Salas 2021) found that despite the success of their social rehabilitation program in promoting community reintegration, staff themselves viewed their work as lesser than specialized neuropsychological rehabilitation programs. As people with TBI continue to experience decreased quality of life, lowered mental health and unmet needs (5,38–40), it is important to consider all available programs to understand what exists for the TBI population and how these have built self-acceptance and resiliency. This will lend a deeper understanding of what renders certain programs more useful than others, as well as what hinders their implementation and success.

Through this study, we aim to 1) characterize the delivery of programs that aim to support acceptance and resiliency for people with brain injury in the healthcare sector, and 2) understand the barriers and facilitators in implementation of programs that aim to support self-acceptance and resiliency for people with brain injury.

Materials and methods

Study design

This study used a participatory focus group design with patient partnership (41–43). Patient partnership was established through collaboration with three key stakeholders from brain injury organizations included in this study, each of whom held lived expertise of acting as caregivers and advocates for individuals with brain injury. Stakeholders were identified based on their ongoing involvement and expertise in brain injury programming as determined through previous research interactions with author JS. The stakeholders were the acting CEO, executive director, and manager of their respective organizations at the time of the study, with decades of prior experience in program evaluation, research collaboration and community development that positioned them to provide valuable input to this study. Close, ongoing collaboration with stakeholders was fostered through both real-time meetings (three in total) and regular communications over e-mail. Stakeholders were consulted for decisions and feedback throughout the research process regarding matters such as the development of study materials, outlining the scope of the study, and centering brain injury population-specific priorities in research decisions.

The authors adopted a constructivist perspective to understand participant language and experience through an iterative research process (see ‘Study Design’) (44). Using manifest content analysis, virtual focus group data were collected while minimally deviating from broad and structural information provided by participants (45–47). Ethics approval (H22–00114) was obtained through the Behaviour Research Ethics Board at the University of British Columbia. Findings are reported using COnsolidated REporting guidelines for Qualitative studies (COREQ) (48).

Participants

This study focused on programs and services for individuals with TBI. The inclusion criteria for this study were as follows: (1) representing a public, not-for-profit, private OR community-based (e.g., group fitness class, arts and crafts program) body, and (2) involved in program development, delivery or administration for people with brain injury. While this study focused on TBI populations, general brain injury was included because community organizations served individuals with varying levels of injury severity. Organizations that primarily provided support for people with stroke, mild brain injuries and other specific, non-TBI conditions, or those offering clinical therapy-based services alone (e.g., Occupational Therapy, Physiotherapy) were excluded.

Recruitment

Convenience sampling was used to recruit participants from a public database of organizations that support people with brain injuries. The database was hosted under ‘All Resources’ on the ‘Brainstreams.ca’ website and was assembled by The British Columbia Brain Injury Association.

To determine whether organizations were suitable for recruitment, authors RT, AT and RK screened the websites of each organization on the database. Website links were provided by the public database. Screening involved comparing the established inclusion and exclusion criteria of this study (see ‘Participants’) with the information provided by organizations in their organizational mission statements, descriptions of populations served, and listings of services or programs provided.

357 organizations were listed on the database website. After counting branches together and removing organizations that were no longer in operation, this list was reduced to 278 organizations in total. Out of these, 104 organizations were found to match our inclusion criteria. Author RT emailed eligible organizations with an initial letter of invitation introducing the study. To facilitate a systematic recruitment process, standardized e-mail templates and a UBC-affiliated e-mail address were created and used specifically for this study. All participants were offered a $30 CAD honorarium for their participation.

Data collection

Electronic consent was obtained through Qualtrics from all participants prior to their participation in the study. Four 60-minute focus group sessions were held over Zoom, an online video calling platform. Each participant attended one focus group session. Focus group methodologies were selected for their in-depth exploration of participant knowledge and experience through group interaction (41–43,49). Prior to attending focus groups, participants completed a brief online survey to provide demographic information about themselves (e.g., role, duration of employment) and their representative organizations (e.g., geographical service area, organizational level). Participants were assigned to focus groups based on their indicated scheduling preferences and were not aware of who other group members were before their session.

Each focus group session consisted of the following components (1): welcome and introductions (2); overview of study (3); defining relevant terms (4); ground rules (5); discussion period; and (6) closing remarks. Interviewers (authors RT, AT and RK) conducted sessions from May to August 2022 and rotated through the roles of facilitating, moderating and observing the sessions. Each focus group was video-recorded and transcribed verbatim post-session. The authors incorporated literature recommendations to ensure effective organization and delivery of focus groups (41,48,50,51).

The focus group discussion guide was developed with guidance from past research and our stakeholder group (18,28). In particular, stakeholders provided feedback about the usefulness and phrasing of discussion prompts and suggested areas for revision. The finalized discussion prompts addressed types of brain injury support programs that exist, perceived benefits of the programs, and barriers and facilitators of their delivery. The three overarching questions were as follows: ‘In your opinion, what are some services or programs provided by your organization that support life for people with brain injury?,’ ‘In your opinion, what helps the implementation of these programs?’ and ‘In your opinion, what hinders the implementation of these programs?.’ During discussions, the facilitator provided additional probes and follow-up questions as needed to stimulate conversation flow, engage more participants, and increase motivation for interaction (41,48). Probing was also used to connect overarching questions to the constructs of acceptance and resiliency during discussions (see ‘Focus Group Discussion Guide’ in Appendix).

All authors of this study were female. Authors RT, AT and RK were all research assistants and undergraduate students at the University of British Columbia. Their previous training and experience in brain injury research included working with community organizations, interviewing individuals with neurological conditions and participating in all stages of the research process. Authors JS and CP were academic researchers from the University of British Columbia, and author SM was an academic researcher from the University of Western Ontario. Participants were informed of the authors’ backgrounds and no relationships existed between the participants and authors prior to the study. After four focus group sessions, recurring patterns among data suggested theoretical saturation thus data collection was deemed complete (41,52).

Qualitative analysis

Ongoing inductive analysis of focus group data was performed during data collection based on the manifest content analysis approach. Manifest analysis is used to organize and explore information as closely to intended meanings as possible (45–47). Using open coding techniques, author RT conducted a line-by-line review of raw data focusing on action and process to create initial codes. Authors JS, AT and RK performed ongoing reevaluation of the codes throughout data collection to ensure their consistency and stability (47). Moving to a focused, selective phase, the authors then generated categories by identifying frequent or significant codes and applying them to larger amounts of data. Lastly, related categories were grouped into themes and sub-themes to describe the data. Final themes and sub-themes were reviewed alongside focus group transcripts to ensure homogeneity with original meanings and contexts (45). Qualtrics demographic survey responses were transferred to a password-protected Excel file and participant names were replaced with assigned identification numbers (e.g., P1) to maintain confidentiality.

Three trustworthiness strategies were used throughout data collection and analysis. First, authors were mindful of their positioning throughout the study. The research team consisted of female undergraduate research assistants with basic focus group facilitation training (authors RT, AT and RK) and research supervisors with robust qualitative research experience (authors JS, SM and CP). Three key stakeholders in leading positions at different brain injury organizations were also involved in the research process. Incorporating diverse perspectives helped to establish consensus during data analysis and allowed the authors to reflect on their biases (46). Second, documented meetings and peer debriefings increased credibility and dependability (53). The authors engaged in peer debriefings after every focus group session and throughout the coding process to examine the evolving data. Regular meetings with stakeholders also provided valuable feedback about discussion prompts, focus group facilitation, brain injury priorities and effective organization of findings. Meeting minutes were recorded, and follow-up updates were summarized at every meeting. Finally, rich verbatim quotations from the focus groups sessions were included in the results. Quotations can help to highlight the voices of participants and increase credibility of findings (46,54).

Results

There were 22 participants included in our study. Five additional participants completed the demographic questionnaire but were unable to attend a focus group session, thus were excluded from the analysis. 19 participants (86% of the sample) were employed staff and three (14% of the sample) were volunteers at their organization. The average months of work experience was 117 months (range from 6 to 324 months).

Participants represented organizations ranging from municipal to international levels (Table 1). The average number of staff or volunteers at the representative organizations was 47 (range from 1 to 200 staff/volunteers). The majority of representative organizations were of the regional level (16 organizations), altogether spanning seven service regions. Across all representative organizations, one-on-one support (16 organizations), peer support (12 organizations), and sport and physical activity programs (12 organizations) were most commonly offered (Table 2).

Table 1. Organization details.

Reach, n (%):
Regional		17 (77)
Provincial		3 (14)
National		1 (5)
International		1 (5)
Funding source, n (%):
Donations	11 (50)
Grants	11 (50)
Government	12 (55)
Customer fees	3 (14)
Number of staff/volunteers, mean (range)	47 (1–200)
Mandate, n (%):
Personal support	20 (91)
Institutional support	12 (55)
Advocacy/policy changes	10 (45)
Education	13 (14)
Main population served, n (%):
Brain injury	17 (77)
General disability	8 (36)
Community members	5 (23)

Note: Participant responses are represented by multiple categories as needed.

Table 2. Types of services/programs provided.

Service/program, n (%)
Education	11 (50)
One-to-one support	16 (73)
Peer support	12 (55)
Caregiver support	7 (32)
Sport and physical activity	12 (55)
Arts and recreation	9 (41)
Forms, referrals, and applications	6 (27)
Equipment and resources	5 (23)
Work/volunteer opportunities	2 (9)

Note: Participant responses are represented by multiple categories as needed.

Overarching theme: rebuilding life

Our analysis identified an overall theme of Rebuilding life after brain injury. This characterized the common mission described by all participants and their representative organizations, programs and services to help the process of reconstructing life and self after brain injury. Within this, three themes with respective sub-themes were identified. The first theme, Navigating external systems, discussed systems and factors requiring support to negotiate through. The second theme, Offering consistent resources and supports, outlined basic and fundamental supports that foster a sense of ‘normalness’ after brain injury. The last theme, Connecting with the community, highlighted how meaningful engagement with activities and people in the community contributes to the recovery experience.

Theme 1: navigating external systems

The first theme, Navigating external systems, included three sub-themes that described the strategies that community organizations used to negotiate aspects of the brain injury healthcare system.

Finances

Participants described experiencing funding-related issues at their representative community organizations. These issues included inconsistent or insufficient funding, steep resource costs and restrictive funding criteria. One participant (P3) described how funding bodies expected to receive specific information after providing funding:

We’re a culture of efficiency. You know, as non-profits, we’re funded by grants often, which means we have to have deliverables, you know, stats are important… And so I think that that is not good. It’s not efficient, it’s not caring, it’s not helping to connect with the individual in front of us.

Other participants talked about alternative strategies that eased their need for external financial support. For example, one participant (P20) emphasized the value of partnerships with community organizations that have similar mandates to lessen the financial burden: ‘We’ve developed a lot of partnerships with the agencies within our community so that we can share the load for funding with each other to help support.’ In contrast, one participant (P14) reported that their organization was successful in delivering supportive programs without ongoing external funding. They credited their organization’s success to spending a lot of time self-investing in programs and ensuring ‘low or no cost for our clients, and a lot of volunteer hours.’

Overall, participants described flexibility and persistence of their community organization to meet the needs of people with brain injury, despite inconsistent and reduced financial contributions.

Systems and norms

Participants identified that systemic challenges negatively influenced access to and delivery of programs or services in the community. Participants described how existing challenges within their organizations were exacerbated by systemic conditions that constricted service delivery, created delays in care, or impeded the quality of services they could offer. Reflecting on their experience of servicing a largely rural region, one participant (P1) shared,

I am the only case manager. Right? I do almost every single thing here. We have a part time staff and so servicing an entire area that’s made up of 11 communities is really, really difficult because I don’t have the time nor the money to go out into the communities to meet people where they’re at.

Systems issues not only affect program providers but also individuals with brain injury trying to access community programs. Participants expressed that the process of finding and receiving resources available to brain injury populations requires an overwhelming amount of expert guidance. One participant (P2) described that while their job was to assist individuals in receiving the resources they need through one-on-one application support, the very experience of working through these forms posed ‘really detrimental effects’ to their wellbeing. Many also expressed ongoing dissatisfaction with government-mandated procedures, describing them as ‘compounded frustration[s]’ (P5) and ‘insult to injury’ (P4). One participant (P5) shared about her exasperation that no progress had been made to rectify these problems:

They will acknowledge that the system is flawed… Like, is it just going to always stay like this? I was positive, we could not be the only society that has the same issues and barriers over and over and over again. But I don’t know. I don’t know how we change it.

Ongoing barriers were found to have far-reaching implications for both brain injury programs and the populations they serve. Overall, participants emphasized that community organizations need to provide ‘community navigators’ to facilitate people with brain injury to overcome system barriers, undertake complex bureaucratic processes and address underlying systemic norms in external organizations.

Planning ahead

Participants described the importance of early intervention in the healthcare system in the recovery process for people with brain injury. Participants shared that involving family, friends, and other social networks of an individual with brain injury in the acute phase allowed for better planning and a ‘tag-team kind of approach’ (P15) that could reduce caregiver burnout. Participants observed particular benefit from forming early connections with individuals with a new brain injury, describing hospital visits as a chance to have casual conversations with these individuals, get to know their ‘life stor[ies]’ (P17), and help both them and their caregivers to look forward to meaningful life after injury. One participant (P22) spoke of their own program’s efforts in this matter:

So what we’ve tried to really embed with the hospital is to try and be there at the get-go, as well as the doctor’s office. We’ve got, you know, we drop off brochures and say, ‘Hey, we’re here’…So it’s about capturing everybody where they’re at, at the beginning, and letting them know that there are support services here.

Participants described how establishing a collaborative relationship between the individual, their support networks, and the healthcare team was vital. Participant 22 described, ‘It’s that whole idea, it takes a village, right? Connecting all the dots for the individual, the people in their environment, and getting everybody on the same page so they’re moving forward.’

Theme 2: offering consistent resources and supports

The second theme included two sub-themes summarizing supports and networks that, when provided regularly and reliably, help to establish new life routines after brain injury.

Addressing fundamental needs

Ensuring fundamental needs are met in the brain injury community was identified as a priority. Participants shared that providing basic resources alongside their services was ‘the hugest, hugest thing’ (P12) contributing to successful program implementation and continuation. Most participants referenced similar community needs, such as housing, transportation and financial support. Participants also expressed that basic resources could support community reintegration by enabling the use of public settings and structures. For example, one participant (P20) reflected on how brain injury awareness identification cards, used for identifying one’s injury status to others, improved experiences of navigating in the community:

If they’re having a really bad day, and they’re struggling with getting on a bus or trying to pay for something, being able to hand the card over and say, ‘This is what’s going on’… really gives them a lot more dignity within the community, instead of people looking at them like they’re strange.

Consistency, both in providing resources and in program delivery, was important for brain injury programming. This included maintaining program offerings, equipment availability and regular event scheduling. For example, one participant (P2) explained how the unreliability of a local door-to-door public transportation service undermined its efficacy:

Sure, it’s nice because it’s better than just regular transit and it comes to your, it’s a door-to-door service, but a lot of times they give a window and they may not come in that window and the client gets frustrated, or… they’re getting a bit more busier so we always can’t find the perfect window to get our clients to the group setting for the right time. So a lot of the times [clients] can miss out, which is unfortunate.

Participants also indicated that reliable delivery of programs helped to maintain ‘a very brain injury-friendly environment’ (P7) and establish normality and routine after brain injury. Even during the COVID-19 pandemic when program attendance was low, ‘still keeping the doors open’ (P5) at organizations was found to be crucial for accommodating diverse and individualized community needs. Another participant explained how regular program scheduling helped individuals to ‘build trust’ and eventually ‘talk about hard subjects’ (P2) with program facilitators. Overall, consistency was highlighted as an important ingredient for successful programming.

Facilitating support circles

Participants advocated for stable support networks around individuals with brain injury, including family, friends, healthcare providers or program peers with shared experience. Family members were identified as particularly important social supports for individuals with brain injury; participants highlighted engaging them alongside healthcare providers in a ‘tag-team kind of approach’ (P15). However, many participants noted that irrespective of relationship, receiving support from another person was beneficial. For example, one participant (P12) depicted general social support as a source of motivation and accountability:

A lot of folks that I work with tend to get very isolated. Life is overstimulating and people retreat. So just having someone to connect with and encourage them, coach them, just support them to make those little steps forward when they’re ready to get out in life and push their limits… having someone supportive to gently coax them to say you can do it.

Many participants described how their community organizations relied on transient service providers (e.g., practicum students, short-term volunteers) for support. They indicated that staff consistency was ideal for maintaining stable support circles around individuals with brain injury, but often not possible due to financial and system constraints. Several participants described practicum students as valuable members of their program delivery teams as they could handle responsibilities akin to other staff yet did not require payment. One such participant (P6) depicted their way of working with practicum students:

…Practicum students, I might only have for eight to ten months, but I declare with the clients that they won’t be abandoned. [Clients] always have me as a counselor too. But then I can roll them over to another practicum student or another group that we’re doing.

This data demonstrates that while participants valued consistency in all aspects of their program design and delivery, it was difficult to completely ensure the same in actual practice.

Theme 3: connecting with the community

In our third theme, three sub-themes collectively explored how opportunities for meaningful engagement in the community helped to facilitate the individual recovery experience.

Sharing & belonging

Participants stressed that fostering a sense of belonging is important for individuals with brain injury. They noted the importance of creating opportunities for connection, communication and validation while prioritizing a welcoming and non-judgmental environment in program settings. One participant (P22) described their organization’s approach:

So if somebody wants to come in and be quiet, that’s okay. And somebody wants to interact quite a bit - that’s okay… giving people a place where they can feel safe and welcome. And ‘there’s no expectation other than that you got here, so thank you,’ you know, that kind of thing… As much as we offer, they’re going to draw what they need for themselves.

Participants shared how programs also helped to address post-injury grief and loss. They indicated that programs should help individuals to tackle their experiences of loss rather than suppress or avoid them, as ‘…any other loss that may have preceded [a brain injury] that has not been resolved comes forward’ (P6). However, while it was important for individuals to accept and embrace their post-injury selves, participants found that validating an individual’s feelings was simultaneously necessary. As one participant (P7) shared, ‘I think some of that, too, is honoring where people are at – that the injury is there, but the feelings behind it, like grieving the change, what used to be, things like that.’

Participants discussed experiences of belonging and validation in programs involving education, networking or peer support. In particular, peer support was identified as a crucial aspect of brain injury programming. When attending programs alongside others with similar injury contexts, participants found that individuals often felt validated and understood. They suggested that shared experience ‘allows people to sit and have a conversation, and they understand each other and that’s awesome’ (P5). Another participant (P22) described peer support as ‘part of the holistic response to somebody’s healing journey.’ Overall, participants emphasized that peer support programs are embedded with valuable opportunities for conversation about shared experience.

Engaging in community

Community day programs and activities were identified by participants as meaningful connection opportunities. These included sport and recreation outings, which were found to be especially exciting for individuals with brain injury. Participants explained that recreational outings typically took place in group settings as people with brain injuries needed support to attend and participate. As such, these outings often served as opportunities to connect with other individuals living with brain injury. Participants observed that promoting fun and enjoyment was an important goal to create quality of life, yet it was often overlooked in the traditional recovery process, in part due to safety issues. As one participant (P21) representing an organization for adaptive sports shared: ‘Often with disabilities, things seem to focus around what’s safe for people to do. For us, it’s more like being able to get people to do something fun and for them to be excited about it.’

Caregiver respite was identified as a further benefit of day activities and outings. Based on both personal observations and direct feedback, participants noted that day programs allowed caregivers to have time for themselves, which helped to prevent caregiver burnout. For example, one participant (P18) described how their program supported caregiver wellbeing:

And I would say our program, some of the ways that they support caregivers is, well, for one thing, sometimes the caregivers don’t come and it gives them an hour or so by themselves, right? Gives them a chance to know that their loved one is in a safe place, and they can go off and just have a break.

Overall, participants described how community programs involving daytime activities support the wellbeing of those with brain injury and their support circles.

Self-discovery through shared connection

Participants described various ways in which their programs nurtured self-development through connection. Relating to others with brain injury in program settings was observed to foster greater self-awareness, including increased awareness and acceptance of the post-injury self. For example, one participant (P3) shared that networking with other individuals with brain injury helped their program attendees to ‘discover what challenges they have and what techniques… they do to try to alleviate their restrictions.’

Participants also noticed that many individuals with brain injury experienced decreased independence in decision-making, but underscored the potential of program settings to cultivate greater autonomy. They shared that even smaller daily decisions can help provide autonomy and agency for the person with brain injury, such as when making meal selections and ‘just [being] served what they’re having, you know, versus being part of that discussion’ (P9). Multiple participants from diverse program backgrounds expressed the same; one participant (P21) from an adaptive programming organization shared,

It’s just about showing people that they still have so many opportunities and options out there. And because I think [after a brain injury] your world often gets very small, and there’s a lot less things you might be confident in, that you could do… just showing them, ‘Yes, you can still do things,’ and getting them outside.

Finally, participants identified that their programs played a key role in rebuilding self-confidence after brain injury. This included confidence in oneself as well as in the ability to cope with post-injury changes. Programs involving peer support or conversations about shared experience were described as especially empowering. Explaining the impacts of their organization’s peer support group, one participant (P1) shared:

Connecting with others who feel the same has given a lot of power to the survivors that I have worked with … survivors are saying that they feel that they’re better able to cope because they can be part of an organization that understands what’s going on with them.

In this way, participants described how individuals with brain injury had increased confidence, autonomy and awareness when connecting with others.

Discussion

This study explored programs that aim to build acceptance and resiliency for people with brain injury through stakeholder insights about program delivery. Our research focused on TBI programs offered in the British Columbia area, contributing to a larger body of literature exploring the barriers and facilitators of brain injury programming through the perspectives of program providers. Participants identified that guidance when navigating systemic barriers, consistent and reliable supports, and connections that prompt self-discovery foster meaningful experiences for program attendees. The overall theme Rebuilding Life was supported by three corresponding themes, which are discussed below.

Navigating external systems

Participants in our study shared about the need to overcome or adapt to systemic challenges for program implementation and sustainability. Past literature has linked challenges in brain injury programming to larger, system-level processes (55–57). For example, Lancman and colleagues (57) indicated that programs in Brazil promoting inclusion in work after TBI were inhibited by systemic barriers such as financial stability. Another study (55) found that extensive paperwork and protocols as well as travel distance, communication breakdowns with providers, program costs, and delays in payment processing were barriers to accessing rehabilitation programs. As in our study, various system-level restrictions can create challenges to brain injury programming (58).

Our findings described how brain injury organizations manage and adapt to persisting system-level challenges, which have also been reflected in previous studies. First, extensive, early communication between an individual with brain injury, their caretakers and their healthcare team combatted later challenges in community transition (59). Mental preparedness, an awareness of available resources, and accepting changes in the self likely contributed to the strategy’s success, as has also been found in other studies (59–61). Second, the benefit of having designated ‘community navigators’ to help individuals with brain injury was emphasized in our findings and also described in previous literature, reporting a smoother recovery process when receiving pre-discharge navigation support, even as systems issues persist (33). Lastly, our findings indicated that community organizations found creative methods to receive resources or support they needed. Findings from this study indicate how community organizations approached systems gaps; further investigation may reveal ways to enhance navigation support for improved sustainability outcomes.

Offering consistent resources and supports

The second theme described how consistency contributes to fostering program success. Data highlighted the importance of meeting basic needs such as housing, transportation and finances, where meeting needs fostered program success and individual recovery, while failing to do so hindered program participation. Our findings resonate with previous literature (62–64). For example, Oyesanya and colleagues (64) interviewed caregivers and healthcare professionals about the hospital-to-home transition after TBI and identified key factors that can impact an individual’s recovery progress, including stability in their financial situation and home environment. Other studies demonstrated that satisfying basic needs is crucial because due to limited activity tolerance after brain injury, a preoccupation with managing basic needs leaves little energy to engage in opportunities that promote self-acceptance post-TBI (59). Findings revealed that consistency is important for program delivery, indicating that active and ongoing programs provided experiences of ‘normality’ post-injury. Previous literature has indicated that consistent and reliable delivery of services promotes improved functional outcomes and satisfaction with care (65,66). On the other hand, fragmented care can cause caregivers and individuals with brain injury to feel unsupported and insecure about accessing services and resources in the community (61). Other research indicates that establishing routines post-discharge, such as attending a meaningful activity group every week, helped improve resiliency and self-acceptance among other benefits in individuals with TBI (19). Our study offers further evidence that factors which promote routine in life after TBI offer tangible benefits to the recovery process.

This study indicated that consistency is not only important to people with brain injury but also for program implementation and sustainability. Indeed, previous literature notes the importance of receiving trustworthy, reliable, and welcoming support after brain injury (67,68). As shown in previous studies, consistent family involvement has been linked to improved recovery outcomes after brain injury (67,69–71); our study extends this knowledge by showing how community organizations can involve family and close support networks to facilitate an individual’s recovery. Our findings suggest that increased collaboration between family caregivers and brain injury program providers can promote both program sustainability and impact.

Connecting with the community

Our third theme discussed how shared experiences foster community connection and personal development, aligning with previous research on the benefits of peer connection and support in brain injury rehabilitation (19). Participants described how their programs helped attendees to form various connections within themselves, between each other, and with their community, making for effective and meaningful brain injury programming. Literature has found that these connections intersect; as individuals connect with others, they can better understand their post-injury selves (72). Personal connections promote awareness, confidence and autonomy, which are key ingredients for resiliency in individuals with TBI (19,21). Moreover, networking, education, and validation through common experience are crucial to finding belonging and sense of meaning after brain injury (73,74).

The peer support models described in this study demonstrated unique benefits. Findings indicated peer support groups facilitated by community organizations may be more sustainable than peer-led groups (26,44). Participants also noted that their community programs unofficially served as opportunities for caregiver respite, which may have facilitated program participation. Caregiver respite has been recommended in literature to prevent burnout and improve wellbeing among caregivers (21,75,76). These findings supplement knowledge about implementing brain injury peer support programs and highlight external factors to consider in programming.

Limitations

This study had several limitations. First, focus group sessions were conducted online due to the COVID-19 pandemic. This online setting may have resulted in fewer visual cues or unclear body language, which could have hindered participant discussions or reduced the research team’s ability to understand what was being shared. Participants also often responded to focus group prompts by discussing issues specific to their COVID-19 experiences, straying away from this study’s exploration of overarching service delivery patterns and perspectives. Where needed, facilitators clarified that participants should discuss their pre-COVID-19 experiences of delivering brain injury programs, which was intended to facilitate greater reflection on long-term program delivery rather than on addressing situation-specific needs. Furthermore, participants came from a range of backgrounds, such as varying roles or lengths of time employed at their represented organization. After fulfilling our inclusion criteria, this study assumed that participants were able to speak on behalf of their entire organization, but persisting differences in participant background may have impacted the experiences or perspectives that were shared. Interpreter bias may also have occurred while generating codes and themes from the data, but member checking was conducted with the stakeholder group to maximize trustworthiness. Finally, convenience sampling methods may not have captured a comprehensive representation of existing brain injury programs and services. However, the study included a wide range of organizations across the province of British Columbia, and findings may be more transferable to similar provinces or states.

Conclusion

This study identified barriers, facilitators, and characteristics of programs that support meaningful life after brain injury. Our research extends previous knowledge of brain injury resources and provides an in-depth investigation of useful post-discharge supports for individuals with TBI. Overall, this study informs individual- and community-level approaches to brain injury programming. Findings can be used to outline adaptation priorities and guide multiple stakeholders (e.g., policy makers) in their decision-making, increasing program sustainability in the rehabilitation field. Future research should investigate how events such as COVID-19 have impacted experiences of TBI service delivery such as those observed in this study.

Acknowledgments

The authors would like to express their gratitude to the participants who took part in this study as well as the BC Brain Injury Association for assistance in recruitment. The authors would also like to thank the stakeholder group for their continued guidance and involvement throughout the research process.

Disclosure statement

The authors report that there are no competing interests to declare.

Additional information

Funding

This work was supported by the Social Sciences and Humanities Research Council Partnership Engage Grant.

Appendix:

Focus Group Discussion Guide

Title: Enabling Meaning after Brain injury through Acceptance and Resiliency Construction (EMBARC): A Look at TBI Community Programs in British Columbia

Discussion Period

(~45 min)

Q1. In your opinion, what are some services or programs provided by your organization that support life for people with brain injury?

Probes:

• a. How do these programs and services facilitate acceptance, resiliency and/or meaning in life after brain injury?

• b. Are there any programs or services that have not been meaningful for people with brain injury? What do you think made them unhelpful?

Q2. What hinders the implementation of these programs?

Probes:

• a. What factors do you think challenge/inhibit the development and provision of these programs in the community?

• b. From what you’ve seen, how (if at all) does public policy (e.g., funding, laws) hinder theimplementation of these programs?

• c. Have there been impactful programs that underwent changes outside of COVID-19 that led to their closure? What do you think would have been needed to allow those programs to continue?

Q3. In your opinion, what helps the implementation of these programs?

Probes:

• a. What factors facilitate/are helpful to the development and provision of these programs in the community?

• b. How (if at all) does public policy support the implementation of these programs?

• c. Have these programs or services undergone modifications, adaptations, or changes that made them better? Why do you think were these changes helpful? How did you implement these changes?

• d. What programs, services and/or resources for people with brain injury do you think are needed in the community?