An exploratory study of working alliance in traumatic brain injury peer support
Alyssa Turcott
A B , Janna Griffioen A C , Kix Citton D , Emily Nalder E F , W. Ben Mortenson A B G and Julia Schmidt A B *
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Abstract
Peer support is recognised as a promising intervention for people with traumatic brain injury (TBI). Peer support increases belonging, mood and self-acceptance after TBI. In peer support, working alliance is associated with rehabilitation engagement and better health-related outcomes. A better understanding of the working alliance formed between those providing and receiving TBI peer support will inform design considerations for creating peer support networks, including specific considerations for matching peer support workers with peer support receivers.
The objectives of this study were to characterise how working alliance is developed through brain injury peer support, and to identify barriers and facilitators of creating peer support networks.
This study used a qualitative interpretive description methodology. Semi-structured interviews were conducted with peer support receivers and peer support workers who were involved in a co-designed TBI peer support program, as well as community partners who were involved in the development or implementation of the program. Responses were analysed using reflexive thematic analysis (Objective 1) and inductive content analysis (Objective 2).
Nine participants participated in the interviews: three peer support receivers, two peer support workers and four community partners. Three themes describe how working alliance is developed. First, ‘feeling understood’ explored the importance of validating experiences after TBI. Second, ‘expanding conversations beyond injury’ highlighted participants’ desire to connect on similar life experiences and personal topics other than TBI, such as navigating milestones and life events. Last, ‘reciprocal growth’ identified how learning occurs between both the peer support receiver and worker. There were four main facilitators of forming a peer support network: characteristics of peer support workers, flexibility in content of sessions, collaboration between researchers and peer support organisations, and formatting of sessions. There were three main barriers to forming a peer support network: irregularity of sessions due to scheduling conflicts, lack of an established peer support program within acute care settings, and lack of resources including space, volunteers and funding.
Findings reveal how working alliances between peer support workers and peer support receivers in TBI peer support are facilitated through validation of individual TBI recovery experiences, and mutual growth in the areas of self-acceptance and hope. Successful peer support networks appear to benefit from flexibility and individualisation of format and content of sessions, as well as the creation of collaborations between acute care and community support networks.
Keywords: collaboration, lived experience, peer support, TBI, working alliance.
Introduction
Individuals with a traumatic brain injury (TBI) may experience limited social participation and reduced employment due to the post-injury impairments, stigma associated with TBI and environmental constraints (Poritz et al. 2019; Mamman et al. 2022). People with a TBI can feel isolated, excluded or invalidated by those who do not understand what it is like to experience a TBI and the life changes that occur (Mamman et al. 2022, Brown et al. 2024a). Moreover, healthcare system costs are significant due to the chronic nature and rehabilitation service needs of people who experience a TBI (Silva et al. 2021; Brain Injury Canada 2023; Dams-O’Connor et al. 2023). Much of the formal supports available during acute care are significantly reduced after patients are discharged from the hospital, and individuals with brain injury and their caregivers have expressed difficulty with the transition and a need for better continuity of care (Wobma et al. 2019; Sveen et al. 2022). Additionally, the rehabilitation provided during acute care tends to focus on mobility and cognition, and less so on areas such as social role or identity shifts (Andreassen and Solvang 2021; Talbot et al. 2023).
Peer support programs offering social or informational support have been proposed as a feasible intervention for addressing social and emotional needs after brain injury, especially during this transition from hospital to home (Baumgartner-Dupuits et al. 2021; Levy et al. 2021; Sveen et al. 2022; Cornwell et al. 2024). Peer support is the sharing of knowledge gained from personal experience from one individual with lived experience (i.e. peer support worker) to another person with a similar lived experience (i.e. peer support receiver; Norton 2024). Peer support provides social support in a way that a therapist or family member cannot. A peer support worker can offer validation, hope and reassurance through sharing a similar lived experience (Kessler et al. 2014). TBI peer support interventions vary in format across studies; sessions have been one-on-one or in groups, in the community or in the hospital, and in-person or over the phone. Sessions range from 15 min to 5 h, although most are within 30–60 min, and the peer support occurs anywhere from twice per week to monthly for a duration of 3–17 months.
Peer support interventions have been shown to increase confidence and self-management of TBI – or the engagement in health-promoting behaviours (Liu et al. 2023) – through increasing knowledge and improving physical and psychological health outcomes (Lau et al. 2021; Aterman et al. 2023). Improvements in coping, social participation and quality of life have also been observed following engagement in a TBI peer support program (Lau et al. 2021). Yet, a systematic review of TBI peer support showed improved quality of life, mood and coping, but no significant impact on self-efficacy or community integration (De Dios Perez et al. 2024). This is surprising, as self-efficacy – or one’s perceived ability to perform desired behaviours and achieve goals (Liu et al. 2023) – has been tied to self-management of brain injury and ability to overcome setbacks (Zhou 2019). The lack of clarity on the impact of peer support on specific health outcomes suggests a need to better understand possible factors that impact efficacy of peer support.
Working alliance, also referred to as therapeutic alliance, is defined as the collaborative relationship between a service provider and a patient, that consists of three components: the interpersonal bond, shared therapeutic goals and co-determined tasks to work towards those goals (Bordin 1979; Stagg et al. 2019). Although traditionally conceptualised within a healthcare provider and patient relationship, working alliance has been explored between peer support workers and receivers in a peer support context (Thomas and Salzer 2018; Maru et al. 2021). Working alliance has been identified as a facilitator of greater rehabilitation engagement (Heredia-Callejón et al. 2023; Sohlberg et al. 2024), and has been associated with better recovery-related health outcomes at 24 months post-intervention for a mental health peer support program (Thomas and Salzer 2018). In this way, the development of working alliance may increase engagement during peer support, potentially leading to better health outcomes.
Prior literature has predominantly focused on working alliance between individuals with TBI and clinicians. Barriers to developing a positive working alliance included poor self-awareness, unrealistic expectations and deficits in social communication, as this interfered with agreement between the patient and clinician (Sherer et al. 2007; Pagan et al. 2016). On the flipside, individuals with TBI have reported better working alliance with their clinician when they felt recognised as an individual and personally connected to their clinician, and when the clinician worked together with the individual during rehabilitation (Williams and Douglas 2022). To our knowledge, studies have yet to explore working alliance within a TBI peer support context between two individuals with lived experience. Understanding what facilitates working alliance in TBI peer support could improve the quality of peer support interventions. Identifying specific considerations for matching peer support workers with peer support receivers could improve the efficacy of peer support. Furthermore, understanding the barriers and facilitators of TBI peer support programs at a personal and institutional level would inform future programs of key considerations to create and maintain successful peer support networks.
The current study was part of a larger project that aimed to evaluate the feasibility of a co-designed peer support intervention for people with moderate to severe TBI with a community brain injury organisation. The objectives of this current study were to characterise how working alliance is developed through brain injury peer support, and to identify barriers and facilitators of creating peer support networks. Working alliance in the current study is defined as the relationship between a peer support receiver and a peer support worker with lived experience of TBI.
Methods
Study design
This study was a qualitative component of a feasibility study focused on peer support after brain injury. The current study followed a qualitative interpretive description methodology (Thorne et al. 1997), an inductive approach to qualitative research that addresses experiential questions through a constructivist and naturalistic perspective (Thompson Burdine et al. 2021). This methodology is especially effective for addressing complex questions that aim to create knowledge that can be used in medical education (Thompson Burdine et al. 2021). This methodology was chosen for its ability to capture the experiences of each participant beyond a restrictive quantitative scale, and collect open-response feedback on design considerations for brain injury peer support programs for rehabilitation.
Data were analysed using both a reflexive thematic analysis (Objective 1) (Braun and Clarke 2019) and conventional content analysis approach (Objective 2; Cole 1988). This study adheres to the COnsolidated criteria for REporting Qualitative research (COREQ) checklist (Tong et al. 2007). Ethics approval was completed by the University of British Columbia’s Behavioural Research Ethics Board (H23-01105), and the research was undertaken with appropriate informed consent of participants.
Program design
The peer support program was created collaboratively between researchers and the Nanaimo Brain Injury Society (NBIS) with an aim to support individuals with TBI during the transition from hospital to home. The NBIS program had been conducting peer support programs for >7 years prior, which involved a peer support worker visiting a hospital and meeting with patients who were interested. The current peer support program was adapted from the initial iteration of the NBIS program by focusing on consistent and regular connection of individuals involved in peer support – a key element of the program.
A co-design approach was used, which involved meaningful engagement with NBIS to receive guidance and expertise in the areas of program design (Kent 2019; Canadian Institute of Health Research 2023). NBIS recruited and trained peer support workers, helped match them to peer support receivers, and provided guidance and expertise on design considerations for a one-on-one peer support program within a hospital setting.
For the current study, a person with a new brain injury (peer support receiver) was matched with a person with brain injury who would provide the peer support (peer support worker). This pairing was sustained during the hospital stay, and then also while the peer support receiver transitioned back home. The matching process was conducted by a community partner from NBIS who matched a peer support receiver and peer support worker based on characteristics, such as similar age, gender and life experience. The peer support intervention was 10 weeks in duration, with 30-min sessions each week. Most sessions took place virtually due to logistical constraints, although the option was provided to have them in-person. The content of sessions was participant-driven and guided by a reflection checklist. This checklist was developed based on Peer Support Canada competencies, and co-designed by people with brain injury with experience providing peer support, community brain injury organisation leaders and the researchers. Details on the checklist are included in the feasibility study. Although specific goals were not pre-determined by researchers, goal setting naturally occurred as part of the working alliance.
Participants
Participants were invited to participate in the current study if they were involved in or connected with the feasibility study. Recruitment occurred via convenience sampling of participants involved in the feasibility study from November 2023 to May 2024. Three types of participants were included to obtain a comprehensive understanding of the program: peer support receivers, peer support workers and community partners. Peer support receiver participants were included if they were aged 19–75 years; sustained a TBI in the past 12 months; could communicate in English effectively; and had completed the feasibility study on peer support. They were excluded if they were currently participating in a peer support program or other study that may affect the outcomes in the present study. Peer support worker participants were included if they were aged 19–75 years; had sustained a TBI >3 years ago; could communicate in English effectively; and had completed providing peer support for at least one participant in the feasibility study. Community partner participants were included if they were able to communicate in English and were involved in the creation or implementation of the peer support feasibility study, including involvement in the matching process of peer support receivers with peer support workers. Community partner participants were included to gain insight into considerations on the barriers and facilitators of creating peer support networks, and included volunteer coordinators at NBIS and clinicians who were within the circle of care for peer support receivers in the hospital.
Data collection
A demographic questionnaire and 45–60-min semi-structured interviews were conducted via Zoom with participants involved in the Peers Actively Involved in Rehabilitation TBI peer support program as a peer support receiver, peer support worker, or community partner involved in the program creation or implementation process. Interview guides (see Multimedia Supplementary File S1) were based on previous TBI peer support research that were developed with patient partners (Kersten et al. 2018; Lau et al. 2021). Kersten et al.’s (2018) qualitative study focused on the acceptability of TBI peer support, and included perspectives from both peer support workers and receivers. Questions for peer support receivers focused on experiences during the program, and aspects of the program that were impactful or useful for peer support receivers. Questions for peer support workers focused on feelings of preparedness, suggested modifications to the program and feelings of support throughout the program. Lau et al.’s (2021) qualitative descriptive study focused on perceived barriers and facilitators of participating in TBI peer support from the perspectives of peer support receivers, peer support workers, caregivers and staff of the peer support program. Questions focused on experiences during the program, impact of the program on different outcomes, such as mood, quality of life and confidence, and perceived barriers to participation.
The current study’s interview questions asked about the participants’ experiences with the peer support program and peer support in general, with the addition of questions relating to specific factors that may have helped facilitate the development of working alliance between peer support receiver and worker. Within the interview, working alliance was referred to as ‘meaningful connection’ to reduce academic language. Recruitment was finalised when all participants who met the eligibility criteria (i.e. previous participants in the Peers Actively Involved in Rehabilitation TBI peer support program) had been contacted to participate. The interviews were conducted by first author AT, along with support from co-author JG (graduate student). Interviews were audio-recorded and transcribed verbatim. Credibility and trustworthiness of data was enhanced by using strategies of data collection triangulation and researcher reflexivity (Morrow 2005; Ahmed 2024). First, by including the perspectives of peer support receivers, peer support workers and community partners, a more holistic picture of the peer support program could be captured from those with lived experience, and those who have familiarity with clinical and systematic considerations. Additionally, researchers debriefed before and after each interview to discuss their positionality and personal biases throughout the data collection process and aim to mitigate this.
Data analysis
Data analysis followed interpretive description methodology (Thorne et al. 1997), where analysis occurred alongside data collection to allow for repeated analysis. Data were analysed using reflexive thematic analysis (Objective 1) and then inductive content analysis (Objective 2; Cole 1988; Braun and Clarke 2019). Reflexive thematic analysis was used to find patterns in interview responses across participant types and identify overarching themes that reflect the research objective of characterising working alliance through brain injury peer support (Braun and Clarke 2019). This form of analysis is beneficial, as it encourages the researcher to explore subjective perspectives and realities of participants without trying to fit responses into preconceived frameworks (Nicmanis 2024). Reflexive thematic analysis was chosen to address the first objective as the flexibility in interpretation of data allowed for researchers to attempt to be in the participants’ shoes to understand the dynamics of a working alliance, instead of taking responses at face value. As an inductive approach was used, coding guides were not used during data coding. All three groups of participants were analysed together to find commonalities across groups. Colour coding was used to track participant types to obtain an overview of how reflective the final themes were for each participant group and identify any unique perspectives.
The first author (AT) transferred transcribed interview data into Microsoft Excel, dividing verbatim responses into meaningful unit chunks, familiarising herself with the data and taking notes of initial ideas of what was being said. She then transferred these meaningful unit chunks while retaining the original terminology from participants to a Miro platform to systemically code the data. These data software were chosen over other qualitative analysis software (e.g. NVivo), as Microsoft Excel is known to be equally effective for data immersion, and is especially useful for narrative analysis and triangulating data (Moncada 2025). This involved grouping similar ideas together. Next, initial themes emerged from the data. These themes were shared, discussed and revised with three other researchers (JG, WM, JS). Once data were regrouped in a way that was accepted by these researchers, theme names were brainstormed. These names were chosen by referring to verbatim quotes from participants, as well as names that captured the grouped data. These theme names were discussed with all authors (researchers and the community partner). Additionally, themes were verified by participants in the study, facilitating complementary perspectives.
Conventional content analysis was then used to identify barriers and facilitators to peer support implementation (Cole 1988). Conventional content analysis involves coding data, then creating themes based on patterns identified within the data itself, without the use of predetermined themes (Cole 1988). Content analysis was used to address the second objective, as much of the barriers and facilitators identified were surface level, and did not require deeper analysis, but rather, were most beneficial when summarised and presented concisely for applications in peer support network development. The first author (AT) thematically coded the data in Microsoft Excel and proposed themes, which were shared, discussed and revised with all four researchers (JG, EN, WM, JS). Themes were developed using an iterative process, discussing with all authors (researchers and the community partner). Additionally, themes were verified by participants in the study, facilitating complementary perspectives. Once data were analysed, relevant models were reviewed to better frame the data. The Person-Environment-Occupation (PEO) model was chosen as a way to present the data (Law et al. 1996). The PEO model considers the interacting components of the person (e.g. self-concept, personality, abilities), the environment (e.g. geographical, social or institutional) and the occupational tasks (e.g. task components; Law et al. 1996). Although the PEO model was used to present the data, it was not used to guide or influence the analysis. Rather, the model was chosen as a means of formatting the findings in a way that could be easily utilised within clinical practice by practitioners.
The two researchers facilitating the interviewers (AT, JG) were a white- and East Asian-identifying woman with educational background in biology and psychology, and a white-identifying women with educational background in psychology, neuroscience and behaviour. Both researchers had interest in the area of brain injury, and >3 years of work experience in brain injury rehabilitation research. There is potential for academic and experiential backgrounds to influence the phrasing of questions during semi-structured interviews, and interpretation of the data during reflexive thematic analysis. In an aim to mitigate this, the researchers engaged in trustworthiness strategies.
For thematic analysis, strategies of researcher reflexivity, researcher triangulation and member checking were used (Morrow 2005). First, the interviewers discussed reflections on content and participant responses after each interview, with an effort to examine personal biases and positionality during the research process. Some realisations included the idea that peer support is beneficial even when session content does not focus solely on the injury, and that individuals with TBI value discussions on personal topics as well. Through open conversations, interviewers tried to actively reduce how their biases influenced the research process, while still acknowledging that the findings were ultimately co-constructed. Second, multiple researchers were involved in analysing the data and deriving themes, therefore integrating different perspectives of the data. The first author (AT) performed the initial round of coding, then these themes were brought to the other authors (JG, WBM, JS) to receive input. Finally, another round of review was done by researchers (AT, JG, EM, WBM, JS). Third, member checking involved sending emergent themes to participants to ensure the findings accurately reflected the participants’ experiences.
For content analysis, two trustworthiness strategies were used: researcher triangulation and member checking (Morrow 2005). The barriers and facilitators identified by the first author (AT) were reviewed and confirmed by the other researchers, as well as the participants.
Results
Out of the 10 individuals invited to participate in the study, one person (a peer support worker) declined to participate due to scheduling conflicts. Participants (n = 9) consisted of three peer support receivers, two peer support workers and four community partners. Peer support receivers (n = 3) and peer support workers (n = 2) were between the ages of 21–50 years and had a range of mechanisms of injury. One peer support receiver and one peer support worker reported having comorbidities (i.e. co-presenting medical condition). Community partners (n = 4) were between the ages of 21–75 years, and included employees and volunteers of community organisations (n = 3), and one clinician. A summary of participant demographics and health characteristics is presented in Table 1.
| Characteristics | PSR | PSW | CP | |
|---|---|---|---|---|
| n (%) | n (%) | n (%) | ||
| Age | ||||
| 21–50 years | 3 (100) | 2 (100) | 3 (75) | |
| 51–75 years | 0 (0) | 0 (0) | 1 (25) | |
| Gender | ||||
| Female | 0 (0) | 0 (0) | 4 (100) | |
| Male | 3 (100) | 2 (100) | 0 (0) | |
| Ethnicity | ||||
| White | 2 (66.7) | 2 (100) | 3 (75) | |
| Middle Eastern | 1 (33.3) | 0 (0) | 0 (0) | |
| Not reported | 0 (0) | 0 (0) | 1 (25) | |
| Mechanism of injury | ||||
| MVA | 1 (33.3) | 0 (0) | N/A | |
| Brain bleed | 1 (33.3) | 0 (0) | N/A | |
| Sport-related | 1 (33.3) | 0 (0) | N/A | |
| Aneurysm | 0 (0) | 1 (50) | N/A | |
| Stroke | 0 (0) | 1 (50) | N/A | |
| Comorbidities | ||||
| Yes | 1 (33.3) | 1 (50) | N/A | |
Note: PSR, peer support receiver; PSW, Peer support worker; CP, community partner; MVA, motor vehicle accident.
The three themes determined through reflexive thematic analysis will be presented first (Objective 1), followed by the barriers and facilitators identified through inductive content analysis (Objective 2). Quotes provided by peer support receivers will be denoted as ‘PSR’, peer support workers as ‘PSW’ and community partners as ‘CP’.
Theme 1: feeling understood
The first theme, ‘feeling understood’, explored the importance of having experiences after a TBI validated, as many individuals have uncertainty on what experiences are a normal part of recovery. This theme equally reflects perspectives from all participant types: PSRs, PSWs and CPs. Three subthemes were identified: ‘sharing shared experiences’, who wears these shoes’ and ‘met where you’re at’, which explained how acknowledgement of and empathy with challenges of having a TBI can strengthen the working alliance.
Participants described the benefit of experiential knowledge and social support from peer support, complementing evidence-based advice from clinicians. Participants highlighted how PSWs are in a unique position to understand the experiences of brain injury, and thus process and reflect with peer support receivers. One CP described the added benefit and reassurance provided when someone has gone through a similar experience:
I think, as a therapist, I can teach people how to do stuff, and I can, you know, give them strategies and make them stronger…but I’ll never fill the gap of lived experience and being able to say, like, ‘hey, this is what worked for me’ and like, ‘yeah, that sucks, and we can talk about that.’
Another CP expressed how peer support is not a replacement for traditional therapy, but can bridge the gap between clinical evidence and lived experience, stating: ‘Peer support provides a living example of what it is to interact with the world with this experience, so it’s experiential, both for the peer volunteer and for the patient.’
The importance of feeling seen and understood by others was emphasised by participants, along with the genuine empathy accompanying shared experience of a TBI, which provided reassurance and validation of the challenges faced post-injury. Participants also expressed the reduced power differential experienced in peer support, versus patient and clinician interactions, which can enhance feelings of trust. As a CP shared,
to have somebody sit down with you and be really present with you and tell you about their journey and that it, you know, has similarities to yours and to have that personal lived experience just allows a sort of vulnerability that wouldn’t otherwise occur and therefore allows room for healing on that level.
Feelings of uncertainty during the initial phase of the TBI experience were reflected on by participants. Participants expressed the benefit of having someone with shared lived experience in reducing stress by broadening their perspective. One PSW reflected on their own experience of the initial phases of TBI, stating, ‘sometimes it’s hard to see the forest through the trees when you’re in the thick of the situation. Often you don’t really realize everything. And I think if I would have met someone like me then… my whole outlook would have changed.’
Building a working alliance in peer support was described to facilitate self-acceptance, hope and resilience. Participants reported that PSWs provide an example of life after TBI, and that seeing someone walking along the same path of recovery, further ahead, provided validation and acknowledgement that others have made it through similar life experiences (e.g. wearing their shoes). One PSR expressed ‘there’s a sense of hope for the future when you’re speaking to someone who’s been through the same thing, i.e.: ‘if this person got through, so can I.’’
Participants expressed that they developed more resiliency through peer support as PSWs provided reassurance and guidance during setbacks or disappointing circumstances. For example, one PSR described the feelings of resilience and hope when he was encouraged to shift his focus:
[Peer support] supported me to be stronger…sometimes I had some hiccups in the middle. You know, I got sick. I had to go to the hospital. But [my peer support worker] helped me to understand that none of these things can hurt and can be a problem. You know, I have to have my plan for future.
Participants described the benefits of open discussions about challenges during ongoing rehabilitation and recovery, discussing the chronic and life-long nature of TBI. One PSR described:
I would say it mostly helped in making me see that there is another side to my recovery, that it’s not just, ‘and you’re done’. That it’s continuous work, and that there is another side to it that I have seen other people on. So I’ll get there too.
Many participants expressed that peer support provided a type of hope and support that family members and friends could not provide. A CP shared a story they heard from a PSW:
[The husband] said, ‘thank you, this is the first time in six weeks that my wife has smiled…there’s a sense of hope after talking with you that there can be, you know, there’s still life available’. And I was like, he was crying. I was crying. [She] was crying. Like it was just such a positive experience that couldn’t be offered from the clinicians.
Overall, one PSR summed up the normalisation and reassurance associated with participating in peer support: ‘I think it’s just helpful to realize this is the person who has been through something very similar to my experience and they’re still okay.’
Participants emphasised that peer support provides normalisation and reassurance about TBI recovery and future potential. A PSR expressed the complexity of the TBI experience, and feeling understood during peer support within his particular stage of life:
It wasn’t until I…started meeting people… especially my own age, that had brain injuries and that had left their careers or even in some situations didn’t even get their careers started. And it wasn’t until I met those people that I, you know, really started to make an improvement in my own recovery
Participants reported that peer support workers can speak from personal experience on common challenges. As one PSR explained, ‘I was getting tired and I was getting fatigue…and [my peer support worker] was saying, ‘do not worry. These things continue. You’re just going to get better and better.’ So that that was helpful.’ In this way, PSWs can provide reassurance and normalisation.
Preference for structured sessions were reported by some peer support, but others reported appreciating the dynamic and tailored framework. A PSW explained the benefit of flexibility in the content of sessions and ‘just to have had a space to be understood and also be just met where [they were] at the time’. Another PSW expressed that being able to discuss relevant and personally meaningful topics depending on the day was especially beneficial during recovery:
Peer support is, ‘I’m here just for you. And I have no expectations. We can just sit here. We can just be. Or you can choose to send me on my way.’ And maybe we had a good, great, you know, visit today, but two days later…not.
Theme 2: expanding conversations beyond injury
Participants highlighted their desire to connect about their similar life experiences and relate on personal topics other than TBI (e.g. navigating milestones and life events). This theme reflects perspectives from PSRs and PSWs directly. Two subthemes were identified: ‘beyond brain injury’, and ‘similar life experience’, which described the development of trust and working alliance through personal and vulnerable discussions.
Emphasis was placed on the value in acknowledging life beyond injury. As one PSW described, ‘I remember like, I would give anything to just have an hour, half an hour a day, where I don’t think, talk, live, feel, brain injury.’ In this way, participants reported the unique aspects of peer support, building an initial alliance through shared brain injury experience, which then created a space to connect on parts of the person’s life outside of TBI. One PSW explained:
Let’s create a space where we can just have a space to talk about what makes us feel good, what we can laugh about, or what he can share about his week. That doesn’t necessarily have to be about brain injury. And that sounds super backwards, you know, not backwards, but counterintuitive.
Participants noted the benefit of simply talking to someone about any aspect of life. One PSW explained, ‘oftentimes, from my experience and also what I’ve experienced being a mentor, is that just having someone there to shoot the breeze with is almost therapy in itself.’
Participants expressed that sharing laughter was a very common occurrence in sessions, and attributed this to an intangible connection involving natural and organic chemistry, and promoting working alliance even when there were differences in lifestyle or interests:
It was amazing. My peer, I felt, was – we’ve come from different, completely different lifestyles. Pretty much everything is different, but we found so many similarities within those differences that it was almost, we were almost laughing about it. It became pretty fun, and our differences became a bonding thing. (PSW)
Alongside the laughter, participants expressed that sessions were emotion-provoking, and reflected deep and personal thoughts. One PSR noted:
[my peer support worker] said that emotions come in waves, which is exactly what I’m going through right now. I feel sadness and frustration. Some good days, some bad days that come in waves.
Other participants explained that sessions did not have to be emotional to be meaningful. One PSR explained he ‘never felt that [he] got overly emotional during [the] meetings… it was just nice to see someone who was further along in their journey.’
Participants described the value in sharing similarity in age and life circumstances, as this can increase relatability and bonding. Participants noted the reassurance and value of discussing how to manage and negotiate general life obstacles beyond the TBI experience:
To be able to relate on aspects of where do we go from here with career, with education, with relationships, with future partners, with goals around having children or getting married, or family dynamics? We’d have these really intense conversations about how do we deal with this? Is it realistic for me to be able to have a family in the future? And it would get really vulnerable…and that was a really important part that I was able to take out of it. When you can relate to someone in their timeline of life. (PSW)
Similarities in career path and in hobbies or interests were noted as a facilitator of meaningful conversations. A PSR reflected on the added benefit of connecting on both the TBI experience and life experience:
We had a lot of common interest outside of our injuries, whether it was music or sports or books… it was really cool to just be able to connect on that human level and then have that experience. Just a really unique connection almost like by chance. When we meet and then talk about our injuries, we can connect on both levels. It just creates something special, extra special.
Theme 3: reciprocal growth
This last theme identified the mutual benefit for both the peer support receiver and peer support worker. This theme reflects perspectives from all participant types, though mainly from PSWs. Two subthemes were identified: ‘problem-solving together’ and ‘reinterpreting the injury’, which emphasised how co-occurring personal growth contributed to investment in sessions and a stronger working alliance.
Participants reported that navigating through circumstances together created a sense of mutual respect. As one CP explained, ‘while there are still power dynamics… the mutual experience, the mutual benefit, the mutual challenge is unique within a peer support situation.’
PSWs reflected on how much they learned from and appreciated conversations with the PSRs:
The sharing of experience really goes both ways, and now I learned just as much as I hope that the other peer was able to learn. Walking away from every session like it just felt so fulfilling. (PSW)
PSWs and CPs also reported there was a reinterpretation of roles, as PSWs took leadership roles in the relationship. For example, one CP reported:
Peer volunteers repeatedly mention to me how helping others who are undergoing the same scary experience they once did allows them to gain perspective about how far they’ve come and propels them to continue forward with more confidence.
Participants also emphasised the supportive role from the community program to maximise the potential of peer support workers and facilitate a successful peer support relationship:
People who have the heart and the courage and the…skill in their lives for this work, deserve and require skilful support as well. It doesn’t happen just by magic. It happened very intentionally. (CP)
Such support may include providing adequate training, so peer support workers know how to navigate the unpredictable, dynamic and potentially stressful discussions that occur during peer support.
Participants reported that the collaboration in peer support may help both individuals identify areas of improvement. For instance, one PSW recognised that he could work on improving his communication skills and goal setting. A PSR expressed how peer support helped him identify his reliance on hospital supports and need for support upon discharge home. He explained:
The biggest thing for me was, I wasn’t aware of all the issues that I had when I was in the hospital. And I didn’t have anyone that was with me to really point out my, my deficiencies.
One PSW expressed how, even though he was further in recovery than his peer, he gained a lot from seeing the hope and self-efficacy of his peer, and this inspired the peer support worker in his own recovery:
Looking at other people and how they took their recovery so differently, I really was able to take a lot of hope from that and move forward with that. So even though I was farther along, it was like hey, self-efficacy was really different. The supports that my peer had were different and I could learn from that, even though I’m way farther along timeline-wise. I learned a lot from that experience.
Participants expressed that peer support can be a transformative experience of a previous traumatic experience into a positive asset for supporting others. Participants explained that PSWs relive the earlier stages of their recovery through interactions with their PSR, which provides them with an opportunity to have a new perspective on their own TBI experience and recovery, and learn to heal through providing peer support to others. As one CP explained:
Just reliving that through providing support to somebody else might allow them to sort of move through some things that have really, you know, been traumatic to them or have otherwise caused, you know, like a lot of intense emotions or fear or anxiety. And I just think that the confidence piece is from what I’ve heard, such a big part of that.
Participants described the benefit in engaging in productive activities, such as peer support, to regain a sense of confidence. As a PSW explained, ‘For myself like having not necessarily been able to go to work and be in full time school like I was before my injury. Yeah, it just brings such a fulfilment to life.’
A CP described how peer support workers can use their traumatic experience to now support an individual in unique ways, which can be a very fulfilling and meaningful experience:
It can be hard after a brain injury to feel that you have like a meaningful role, especially if you’re not able to return to your previous job, or things look different with your family and just your roles in the home community are different. And I think people really benefit from turning their dramatic and painful, and like totally life destabilizing, reorienting experiences into something productive and meaningful and beautiful.
PSWs described how sharing stories with PSRs helped them reflect on their own growth and progress through recovery. One PSW shared the impact this role had on his mental health:
After my injury…I felt like I kind of lost that direction and passion and purpose in my day-to-day life, but being able to be like a peer mentor or peer support worker or volunteer, gave a bit more purpose, a little bit more passion in that day-to-day. It was a huge boost. It gave me something to look forward to in the week and something that I felt like my experience was not a negative thing. It was something that was positive.
Participants expressed renewed motivation that accompanied having a different perspective on their own rehabilitation progress. Some peer support workers expressed a deeper level of empathy for those who are new to TBI, and a desire to give back to the TBI community. Participants described the re-evaluation peer support receivers had after engaging with peer support workers, and how ‘they see someone who has like a meaningful role in the community and has like, a home and like, people that love him and like a vision of kind of like a possible successful future.’ (CP)
Barriers and facilitators to creating peer support networks
A summary of the barriers and facilitators to creating peer support networks is provided in Tables 2 and 3, respectively. The PEO model (Law et al. 1996) was used to guide display of the results for clinical practice.
| Categories of barriers | Theme | Frequency of PSR | Frequency of PSW | Frequency of CP | Exemplar quote | |
|---|---|---|---|---|---|---|
| f (% of total) | f (% of total) | f (% of total) | ||||
| Person | Injury-related impairments that impact attendance and scheduling (e.g. memory, organisation) | – | 1 (33.3) | – | Some of the logistics aspects, I would say, were difficult, but [the researchers] made it easy for me and set it up nicely… I know there was scheduling stuff there as well. So yeah, it was. It’s it’s sort of a balance. – PSW | |
| Injury-related impairments that impact session delivery (e.g. distractibility) | – | – | 1 (25) | … one of the challenges with [providing] peer support is that a lot of patients have cognitive impairment. And that’s a very, like real and inherent part of having a brain injury…so you would need to somehow find a peer support worker who…has experienced some type of cognitive impairment…to actually serve as a meaningful resource to all the people who have had that experience, but also have enough insight, which is a cognitive skill – CP | ||
| Environment | Limitations of online delivery (e.g. may not be as intimate as in-person, may not be as helpful for people with certain impairments like aphasia or vision issues) | 2 (66.7) | 2 (100) | – | …no fault of his, of course, but on his screen for his Zoom, he was often either walking or moving around. And so and for me, just with my own brain injury, because I have a lot of vision issues, I found it really hard – PSW | |
| Logistical barriers to consistent organisational support for peer support program within major acute care settings beyond the project; limited sustainability of the program | 1 (33.3) | 2 (100) | 1 (25) | When we’re so spread out, it’s almost like, ‘Oh, I wish we had like could just pick up a NBIS kind of structured program and just create like a Vancouver brain injury’ – PSW | ||
| Limited long-term resource stability (e.g. secured online space, volunteers and funding) | – | 1 (50) | 4 (100) | Depending on the funding cycles and the priorities within government, and the capacity within an organisation year by year it’s very challenging… this program could go away next year… then we would be scrambling to find funding somewhere else – CP | ||
| Occupation | High frequency of sessions may cause strain for peer support workers without adequate support | – | 2 (100) | – | The only problem was sometimes it was once a week, so sometimes I was really, you know, busy and trying to kind of catch up to it once a week. It was difficult… – PSR | |
| Low frequency of sessions may reduce familiarity, trust and efficacy | 2 (66.7) | – | – | We had good conversations. The 30-minute sessions went by quickly, like they weren’t long enough… I think if we really, really got in in depth in conversation, it was short – PSR |
Note: frequency of barriers mentioned by peer support receiver (PSR), peer support worker (PSW) and community partner (CP) participants.
| Categories of facilitators | Theme | Frequency of PSR | Frequency of PSW | Frequency of CP | Exemplar quote | |
|---|---|---|---|---|---|---|
| # (% of total) | # (% of total) | # (% of total) | ||||
| Person | Personal characteristics of peer support workers | 3 (100) | 2 (100) | 4 (100) | You know, I think the caring characteristics was important. You know, he always cared about me and about the stuff that I had. So it was important. – PSR | |
| Transparency and clear communication of program parameters (e.g. expectations of program content, ending program) | 1 (33.3) | 1 (50) | 2 (50) | …so that would be understanding that communication is probably the weakest area of my recovery right now and like any individual with brain injury that would be a, that would be the only change I would say to this. Clearly articulating what the next steps are after the 10 weeks is over. – PSR | ||
| Effective and thorough training of peer support workers to increase skills and confidence for peer support | 2 (66.7) | 2 (100) | 1 (25) | So, one of the things we did to evolve the training package was to make sure that peers were able to provide their input and also critique, right, to say ‘yeah… that’s not really how it goes down’, you know? – CP | ||
| Environment | Strong collaboration between brain injury organisations and researchers in program delivery | – | – | 3 (75) | It’s great, because we have an established relationship with [the researchers] and we have we work on different projects as well… Because there can be delays and there’s always bumps in the road in these in these projects. So there with that foundation of trust. And and understanding that things don’t always go the way that we’re, we think they’re going to go. I think that’s very helpful. – CP | |
| Access to necessary resources (e.g. funding for participants with TBI, assistance for peer support workers, communication of program parameters) | – | 1 (50) | 2 (50) | Barriers? Funding. Like just management initiating that process and being an advocate for it. … I want to provide peer support in terms of connecting patients, but there’s not really a means to do that, like a formal way. Which would be really cool if it was but currently, there’s not. – CP | ||
| Consistent peer support workers provide stability for the peer support receiver during the discharge transition from hospital to home | – | – | 2 (50) | We were both super flexible, and being able to kind of adapt and be able to talk about it… like this happened, how do I navigate this situation and what should I do? Kind of having that person to kind of get feedback from is really good. – PSW | ||
| Occupation | Individual sessions (as opposed to group sessions) are more personalised and tailored | – | – | 1 (25) | I think it’s just like a more intimate environment and a space to have conversations that they might not feel comfortable having in a group setting…meeting with the same person on a regular basis and starting to build a relationship that way, I think, brings out a lot of the healing journey for people where otherwise they might not get to if they just met with the person one time, or again within a group setting. – CP | |
| Implementing the learning and decision-making from sessions can increase autonomy and control over recovery | 2 (66.7) | 2 (100) | 3 (75) | [my PSW] had lots of those issues before and he could tell me that, you know, how he dealt with it and it was useful for me to plan things, you know, after talking to him to know how what to do with it. – PSR | ||
| Flexibility of sessions to be individualised to participants (i.e. goal-based vs conversational, session duration, online to increase accessibility | 1 (33.3) | 1 (50) | 1 (25) | It sometimes guided the whole conversation. He would have really specific questions sometimes about certain appointments or certain scans. Anything really and just asking for advice. Sometimes that really guided the conversation. I’m not saying every peer has to do that, but it was a really cool thing he did. – PSW |
Note: frequency of facilitators mentioned by peer support receiver (PSR), peer support worker (PSW) and community partner (CP) participants.
Certain PSW qualities were identified as major person-level facilitators to peer support success. For instance, humility allowed peer support workers to reflect on adapting and adjusting during the sessions, and openness reduced the power differential during sessions. Additionally, showing genuine interest and passion for PSRs’ progress in recovery was reported to increase feelings of fulfilment for the PSW, as well as connection for the PSR and investment into the program. Participants also reported it was beneficial for PSWs to have self-awareness of their abilities and limitations, as it modelled transparency for the PSR. Sociableness and kindness were also described as factors that increased the PSR’s comfort during sessions, and encouraged them to disclose personal or vulnerable thoughts and facilitated the flow of conversations. Participants reported that courage of participants with TBI was a facilitator for peer support sessions, as participants require courage and strength to reflect on personal traumatic experiences and uncertainty in life.
Discussion
To our knowledge, this is the first study to provide insight on experiences developing a working alliance in peer support, as well as barriers and facilitators to supporting working alliance after brain injury. Our study indicated that working alliance in TBI peer support is facilitated through vulnerable conversations between PSRs and PSWs that provide reassurance and validation about the recovery process and connection beyond the injury. Furthermore, this study highlights the mutual growth that occurs for both peers with TBI in areas of resilience, hope and self-acceptance, and how the two-way nature of peer support reduces power differentials and further contributes to a working alliance. This study also identified several barriers to creating peer support networks, including TBI-related impairments affecting scheduling and session delivery; lack of consistent resources needed to run peer support programs; and strain on peer support workers and organisers due to the intense time commitment. Facilitators included having skilled peer support workers with effective leadership qualities; collaborative relationships between researchers and peers support organisations; and flexibility in peer support session format and content.
Our first theme indicates the complimentary role of peer support to standard rehabilitation, such as occupational therapy or physical therapy. In hospital and rehabilitation settings, it is common for traditional health outcomes (e.g. mobility, cognition) to be prioritised, rather than identity or social roles (Andreassen and Solvang 2021). However, aligning with previous research, knowledge gained from lived experience can complement clinical knowledge, as it reflects firsthand experiences (Miao et al. 2022). Peer-to-peer interactions can reduce the power differential between those providing and receiving advice, leading to increased receptiveness (Patterson et al. 2017). The social support provided by peer support in our study may have helped to reduce feelings of loneliness that are commonly associated with a TBI, which is congruent with previous research on brain injury experiences (Wobma et al. 2019; Lowe et al. 2021).
The importance of shared life experience was also emphasised in our first theme. Previous studies on developing connections during spinal cord injury and traumatic brain injury peer support indicated that lived experience of the injury and shared interests were the most important characteristics to consider when pairing peer support workers and receivers, over and above demographic factors (Gainforth et al. 2019; Lau et al. 2021). Although this partially supports our findings, participants in our study indicated that age can be a particularly important demographic factor in creating a working alliance, as this had a large impact on the life stage, and the respective milestones to navigate. Future research is needed to understand whether age is an appropriate proxy for life stage when considering matching TBI peer support receivers and workers.
One notable finding was the desire for peer support receivers to connect on aspects beyond the injury, which suggests that there is importance in navigating milestones and important life events alongside each other. This may be due to the desire to be seen as more than just the injury (Mamman et al. 2022; Williams and Douglas 2022). This also reflects a need to meet PSRs where they are at in recovery, and to allow for flexibility and tailoring of peer support sessions to meet the needs of PSRs at that time. Individualisation of content, design and delivery mode of sessions (e.g. online or in-person) was highlighted by participants as being beneficial. This aligns with previous research on working alliance that identified collaborative decision-making and goal setting for treatment as key facilitators of working alliance (Williams and Douglas 2022; Sohlberg et al. 2024).
Previous research indicates that people can experience changes in identity, coping and appraisal during the transition from hospital to home (Nalder et al. 2013). As described in our third theme, peer support provided stability during this time of transition when hospital supports were no longer readily accessible. Another part of the transition process involves navigating the changing and evolving relationships with family and friends after TBI (Douglas 2020). Having someone with similar lived experience to help navigate and make sense of the relationship changes can be beneficial during recovery (Northcott et al. 2022). Peer support also increased self-acceptance and hope, as PSWs were perceived as role models and ‘walking testimonies’ of where the PSR can get to with time and resilience, while still setting realistic expectations for the long-term nature of TBI. The increased feelings of closeness and resulting alliance reflects previous research indicating peer support and peer befriending supports validation of rehabilitation as a continuous process with various setbacks and challenges (Northcott et al. 2022; May et al. 2023).
Our third theme indicated personal and rehabilitation benefits experienced by the peer support worker, which highlights the ongoing and continuous rehabilitation journey after TBI; indeed, TBI is described as a chronic condition (Dams-O’Connor et al. 2023). PSWs obtained reciprocal benefits of engaging in peer support sessions, similar to previous research, indicating meaning and purpose can occur within the peer support role (MacLellan et al. 2015; Tsow et al. 2024). A scoping review on peer support among disadvantaged groups found that mutual learning was a major benefit to peer support (Mikolajczak-Degrauwe et al. 2023). The ‘two-way effect’ of growth and mutual benefit during peer support was facilitated through problem-solving together, which further reduced the power dynamic, and overcoming obstacles together, which created mutual joy and strengthened alliance. This also fostered a sense of strength and mutual support through sharing both struggles and success together, thus sharing vulnerability and developing trust. The transformation of a traumatic experience to a powerful tool for productive activity promoted confidence and self-efficacy as well.
A major person-level barrier in maximising the benefit of peer support was the inability for participants with TBI to regularly attend sessions, most often due to scheduling conflicts. Participants reported difficulty maintaining consistency due to memory issues and needing reminders from community partners. Scheduling inconsistency has been identified as a common barrier to the effectiveness of TBI peer support (Morris et al. 2017), although research has found that cognitive difficulties do not prevent the development of a successful working alliance within a TBI cognitive behavioural therapy context (Zelencich et al. 2019). Other environmental-level barriers identified in our study included the lack of a consistent peer support program within all acute care settings, resulting in a disconnect between hospitals and brain injury organisations in the community, and logistical barriers when peer support receivers transitioned from hospital to home. A study on barriers and facilitators to acquired brain injury healthcare services by Grewal et al. (2024a) found similar barriers, noting that siloed care systems result in difficulties in accessing necessary care. They proposed collaboration between community organisations as a potential solution, which reflects our study findings that collaborative relationships between researchers and community organisations can help facilitate the creation and maintenance of peer support networks.
Limitations
Our study had four main limitations. First, the sample size of this study was relatively small, which may impact how reflective the experiences described are for other individuals in TBI peer support programs. However, given that our sample included multiple perspectives and the exploratory design of the study, findings provide key knowledge of working alliance. Second, our sample was fairly homogenous in gender representation, with all participants with TBI being men. There may be key differences in experiences after TBI, such as differences in mental health (Brown et al. 2024b), so future research on TBI peer support should include more non-male identifying participants. Third, we used convenience sampling, which may impact the generalisability of our findings to peer support participants in other countries or contexts. Further research on peer support within a variety of contexts, such as international peer support programs or programs targeted for people in rural areas, could be beneficial in understanding preferences in session format, content and match characteristics cross-culturally. Finally, participants in our study only participated in the peer support program virtually. A previous study on working alliance between social workers and individuals with chronic diseases found no significant difference in alliance between online and in-person sessions (Damianakis et al. 2008). However, other literature on acquired brain injury community support programs showed mixed results for online versus in-person programs, with some potential trade-offs with accessibility, usability and inclusivity (Grewal et al. 2024b). Valuable insight could be gained through comparing the engagement of participants during in-patient rehabilitation context delivered programs compared with online meeting formats.
Conclusion
Future research could consider implementation of working alliance in peer support programs using a larger sample that includes peer support workers with varying ages and experiences after brain injury. Research could consider how demographic factors, such as gender and culture, may influence the impact of peer support on health outcomes.
Data availability
The data that support this study will be shared upon reasonable request to the corresponding author.
Declaration of funding
This study was funded by the Canadian Institutes of Health Research (CIHR) and Social Sciences and Humanities Research Council of Canada (SSHRC).
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