Introduction

Peer mentorship programs for people living with spinal cord injury (SCI) have been made widely available across Canada [1]. Our team has defined peer mentorship as a peer interaction that aims to help individuals who share similar lived experiences adapt and/or thrive [2]. Peer mentorship programs delivered by community-based SCI organizations typically aim to help individuals with SCI adapt to living with a SCI and thrive with their new reality. These programs are often multi-purposed (e.g., focusing on rehabilitation and/or social reintegration), address various issues (e.g., improving health, teaching skills) and are delivered using different approaches (e.g., group, one-on-one). Individuals with SCI can be introduced to these programs while in rehabilitation or through community outreach and events organized by community-based organizations [3].

The multi-purposed approach to peer mentorship renders these programs difficult to evaluate and identify key outcomes. In a broad evaluation of Canadian SCI community-based organizations that offer peer mentorship programs, only 67% of community-based organizations systematically tracked outcomes [1]. Lack of resources and uncertainty about which outcomes to use were identified as key barriers to evaluate community-based peer mentorship programs. In their scoping review, Barclay and Hilton highlighted that SCI peer mentorship studies assessed many outcomes with no consensus on which outcomes should be consistently measured in this setting [4]. There is evidently a lack of understanding on the outcomes most relevant in SCI peer mentorship context, and especially within programs delivered by community-based organizations.

Some SCI peer mentorship qualitative studies have hinted at key outcomes such as hope, acceptance, identity building, self-efficacy, quality of life, and participation in daily and social activities [5, 6]. However, when quantitatively exploring the impact of peer mentorship programs delivered by community organizations, only small to moderate effects were found on some of the identified outcomes including competence/self-efficacy, participation, and quality of life [7]. There has been some promise in controlled research-based interventions which have found moderate positive effects on self-efficacy, self-management skills, awareness of resources and services, and life satisfaction [8, 9]. There remains an important gap in our understanding of key outcomes of peer mentorship programs delivered by SCI community-based organizations.

Capturing a comprehensive picture of SCI peer mentorship outcomes within ‘real world’ peer mentorship programs is critical for optimal evaluation of these programs. Such a picture could provide community-based organizations with data highlighting the impact of their peer mentorship programs on people with SCI and help them obtain additional resources to support peer mentorship programs. The data can also help guide the process to identify the most important outcomes for the SCI context and inform the development of a community-based peer mentorship evaluation tool. Therefore, the purpose of this study was to obtain a deeper understanding of the outcomes of SCI peer mentorship programs delivered by community-based organizations. This qualitative study was led by the following research question: What are the outcomes of SCI peer mentorship programs delivered by community-based organizations?

Methods

Research design

A community-university partnership was established between four provincial community-based SCI organizations and researchers from two universities [10, 11]. Using the IKT guiding principles for SCI research [12], members of the partnership were involved with the funding application, co-developing the research questions, and interpreting and disseminating the results. The research team consisted of directors of community-based SCI organizations with, collectively, over 25 years of experience (TC and HF), academic SCI researchers with qualitative research experience (SS and HG), a qualitative academic researcher (LS), and graduate students (LH, ZS, and SH). LH, a graduate student, was trained as a qualitative researcher under the supervision of LS and completed SCI educational modules prior to conducting the interviews. Team meetings were held throughout the research process (Appendix A).

We applied a generic qualitative design given the exploratory and descriptive nature of this study on the subjective experiences of individuals with peer mentorship programs [13, 14]. We adhered to a constructivist, interpretivist approach with a relativist ontology. Meaning, we positioned knowledge as being socially constructed and reality as relative to the individual and context. We did not attempt to find a transcendental “Truth” about SCI peer mentorship, but rather we aimed to illustrate the diverse experiences of individuals involved in SCI peer mentorship [15].

Participants

Using a purposive method, the partnered provincial community-based SCI organizations recruited participants through their data management system and/or direct contact. Eligible participants were adults, spoke English or French, and were not diagnosed with cognitive impairment. They either received peer mentorship (i.e., mentees), provided peer mentorship (i.e., mentors), be a family member of a mentee/mentor, or coordinated peer mentorship programs (i.e., staff with or without SCI) within the programs delivered by our partnered community-based SCI organizations. Participants self-reported whether they met or not each inclusion criteria when signing the consent form. Prior to the commencement of the interviews, the researcher doubly verified with the participants to confirm their eligibility.

Procedures

The Research Ethics Boards of McGill University and the University of British Columbia Okanagan approved this study. We collaborated with our partner organizations to identify eligible SCI peer mentors, mentees, and organizational staff. After obtaining informed consent, participants took part in a one-on-one interview. During the interviews, participants shared their experience with community-based SCI peer mentorship. We also invited mentors and mentees to refer family members who may have an interest in our study. Family members who consented to participate were also individually interviewed to discuss the impact of peer mentorship.

All interviews were semi-structured by following an interview guide (Appendix B) consisting of open-ended questions. The interview guide was co-designed with the community partners and pilot tested with lab members and a person with SCI prior to the start of the study. We did not apply any theoretical frameworks when developing the interview guide. No adjustments were made to the interview guide following the test as it was found to be comprehensive and open to input from multiple perspectives. Each interview was 45–60 min long and was performed via phone or Skype because participants were recruited from four different provinces in Canada. All interviews were audio-recorded and transcribed verbatim while the organizations’ and participants’ names were replaced by pseudonyms. LH composed fieldnotes during and after the interviews.

Data analysis

Data were analyzed using a thematic analysis approach [16]. The graduate student (LH) was immersed in the data by reading and recalling the interviews repeatedly, and then extracted codes (i.e., meaningful portions of data relevant to the research questions) from the transcripts which were reviewed by SS. The codes were reviewed and grouped into themes and sub-themes by LH, SS, and a research assistant over two days. Next, six rounds of discussion were held between LH and SS to ensure that the codes cohered meaningfully within each theme and the definitions of the themes differed. All themes and sub-themes were developed inductively based on the data reported by participants and researchers’ interpretations. The codes, themes, and sub-themes were reviewed with community partners TC and HF, as the community-based critical friends. Their active involvement helped ensure the results were valid to the practice of our community partners [17, 18]. Therefore, multiple researchers were involved in the analysis, which ensured reliability and credibility. Important considerations, actions, and decision-making throughout the data collection and analysis were documented using an audit trail. This strategy enabled us to inspect and reflect on the research process [17]. We have opted not to consider data saturation for the analysis because it did not align with our constructivist, interpretivist research approach [19].

Results

I was twenty-four when I got hurt…and very involved in a very superficial world. When I got hurt, obviously, that was over for me. I, basically, lost all sense of my image. I was never going to wear a skirt again, like that was it. [Then], at the hospital, I remember seeing this girl roll by. She was so beautiful, and she was wearing a skirt. I talked to her, and she was a [peer] counselor, but I didn’t know that. She took me shopping. I didn’t buy anything because I was horrified to buy anything. But, we went out, had a glass of wine, and hung out together. We got hit on by some guys. That I was like, ‘Wow’. I didn’t realize the impact of that [moment] until later in my life. (Melissa, staff, complete tetraplegia, had been a mentee and a mentor)

Peer mentorship can have a lasting positive impact on individuals with SCI and these positive experiences extend to those providing mentorship (i.e., peer mentors). Interview data (N = 36) from nine peer mentees, thirteen peer mentors, six family members, and eight staff were organized into four overarching themes (presented as headings)––Positive outcomes for mentees, Positive outcomes for mentors, Reciprocity, and Negative outcomes for mentors––and sub-themes, in italics (Fig. 1). Participants’ demographic and SCI-related information are presented in Table 1. Participants’ quotes supporting each sub-themes are presented below or in Table 2.

Fig. 1: Structure of the themes and sub-themes of SCI peer mentorship otucomes for mentors and mentees.
figure 1

Positive and negative outcomes are listed on the top half of the figure for mentees and on the bottom half for mentors. Reciprocal positive and negative outcomes are listed in the darker boxes in the middle of the figure.

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Table 1 Participant demographic and SCI-relevant information.
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Table 2 Themes, sub-themes, definitions, and quotes of outcomes of SCI peer mentorship.
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Positive outcomes for mentees

Participants emphasized the importance of feeling understood (Understanding) while living with SCI. Specifically, “it helps to know that somebody really understands what you’re going through… [especially when] people say, ‘Oh yeah, I understand.’ [but] How? You’re an able-bodied person. How could you possibly understand what I’m going through” (Valerie, mentee, complete tetraplegia). Therefore, SCI peer mentorship is about “being able to share with someone [with SCI]…it’s just something they understand. Whereas with other people, you kind of need to explain what your situation is or how you’re feeling, and they might not understand” (Linda, mentor, incomplete tetraplegia, had been a mentee).

From an emotional/psychological point of view, SCI peer mentorship serves as a source of Inspiration and Hope because mentors “pretty much showed me that there is life after. You can live a great life. And yeah, just because you’re in a chair––life still rolls on” (David, mentee, complete tetraplegia). It also helped reduce feelings of Loneliness and Isolation by “knowing that you’re not alone” (Melissa, staff, complete tetraplegia, previously a mentee and mentor). SCI peer mentees often tell Melissa “My doctor tells me that I’m a unicorn. There’s no one else like me” and Melissa typically responds that “[the type of SCI] is not unusual, but it could be for a doctor” to highlight that a mentee is not alone in their experience of SCI. Peer mentorship can serve as an Emotional Outlet and Psychological Support for people with SCI. Lisa, a family member, mentioned that “there’s a fine line between falling into a depression and trying to live day to day. Leo [Lisa’s partner] said that Leo’s mentor’s visits helped him [Leo] get out of that depression. Peer mentees also obtain a sense of Belonging in a community because it helps a person “stay involved. I guess to make new friends. Find a community… Just enjoying life better” (Sam, mentee, incomplete tetraplegia).

Tangible outcomes of SCI peer mentorship were also noted by participants. For one, SCI peer mentorship assisted mentees to navigate the Medical Field and healthcare system such as communicating and understanding healthcare professionals: “making sure that I’m speaking to the right person [healthcare professional]” (Jeff, mentee, complete tetraplegia). Participants indicated that SCI peer mentorship can help mentees regain Independence/Self-reliance as highlighted by Kimberly (mentor, complete tetraplegia): “Positive outcomes are when they’re able to progress in life, and start managing things on their own”. Mentees also acquired Knowledge including tips and tricks. Without mentorship, “I’d still be probably struggling. It’s basic little tricks and tips. I’ve seen a lot of guys that they end up going back to their apartment or house, and struggle out because they don’t know how to transfer right” (David, mentee, complete tetraplegia). These tricks are important for various life domains such as Housing and Financial Assistance.

From a community engagement perspective, mentees reported experiencing enhancement in Mobility within the community such as assistance for transportation: “When I was looking for a vehicle, I asked him [the mentor], because he’s been driving for years, what should I watch for when picking out a vehicle” (Richard, mentee, complete tetraplegia). Sport Engagement was another way that SCI mentorship benefited mentees where James (mentee, incomplete tetraplegia, had been a mentor) mentioned:

The highlight would be when I got in that rugby chair. [My mentor] finally hounded me enough to actually get in it and to actually do it. And then, I mean, I wanted to spend as much time in the rugby chair as I can.

SCI peer mentorship supported individuals to find Employment. Paul (mentor, incomplete tetraplegia, previously a mentee) highlighted that “my first summer job in [city] was found for me by the [provincial organization], through the association’s contacts. [It was about] being aware of the potential job that would fit”. As such, gaining the knowledge, tips and tricks can help mentees build Self-confidence, as Emily (mentee, incomplete tetraplegia) stated that peer mentorship “made me less worried and it gave me courage to move on and have my head up high”.

Positive outcomes for mentors

Participants discussed how SCI peer mentorship benefited mentors by virtue of engaging in the mentoring process. From a personal attribute perspective, mentors reported gaining Confidence and Pride: “Obviously, it wasn’t all from me, but I’d like to take a little bit of pride in knowing that I sort of got them to open up and not feel as bitter and angry as they did when they first got there” (Josh, mentor, complete tetraplegia). From mentoring, they reported developing a sense of Purpose (“I know Tom [participant’s husband] has mentioned that before; it makes him feel like he has a purpose. He felt lost for a while”; Natalie, family) and experiencing Personal Growth (“It’s a good healing thing for me as well. Every time I do a talk, I think: ‘Well, maybe I could’ve talked about this or that a little more.’ So you can grow on what you talk to people about”; Brian, mentor, complete tetraplegia).

Mentors got a sense of Gratitude from Mentees from the positive feedback they received for helping a fellow person living with SCI. Natalie (family) expressed the gratitude felt by her husband: “[He] was just so happy that he was able to answer all the questions. He had the biggest smile on his face. He was like ‘I feel like I actually helped him’”. Mentors also indicated enjoying Giving Back by Helping Others, as Kimberly (mentor, complete tetraplegia) expressed mentorship gives her “that drive and determination each day to go to work, and to help people, and to be there as a support to them. And it just feels good when you’re able to help someone and be there for them”.

Reciprocity

Participants reported outcomes that were beneficial for both mentees and mentors. As a result, there was a Collective Benefit where “even if you are positioning yourself as a mentor, and someone is kind of a role model and in a position of helping, you still derive an immense benefit, kind of reciprocally from the other person” (Donald, mentor, incomplete tetraplegia). Mentors and mentees also gained knowledge about living with SCI from each other through Shared Learning. Drawing on the multiplicity of experiences and perspectives, mentors and mentees improved their Problem Solving Skills by co-creating unique solutions. For mentees and mentors, Community Building was an important outcome: “There’s a reality to say we are building an SCI community because we need each other” (Jeffrey, staff, complete tetraplegia, had been a mentee and a mentor).

Some participants reported having No Negative Experiences or Outcomes. However, a challenge in some mentorship relationships was a Lack of Connection between mentees and mentors, resulting in less than optimal mentorship experiences or even the discontinuation of mentorship.

Negative outcomes for peer mentors

The emotional commitment of providing peer mentorship could also have some negative outcomes as expressed by participants. They reported the Emotional Toll of mentorship:

“As a mentor, I’m still a person living with SCI, dealing with stuff every day. If I’m feeling kind of precarious about that, on top of that I’m dealing with someone who’s also got a very serious issue…that can become difficult to manage emotionally” (Donald, mentor, incomplete tetraplegia)

The demands of peer mentorship can also force mentors to relive their traumatic experiences while retelling their story when trying to support others. Further, the Impact of Negativity associated with difficult mentorship conversations/interactions also took a toll on mentors. Finally, participants noted feelings of Disappointment when expected outcomes were not attained, such as Donald (mentor, incomplete tetraplegia) who mentioned “I mean if you’re working with someone who’s facing really serious issues and you have the sense of not being able to help them as much as you would want, and [you will be] frustrated by that”.

From a practical perspective, providing mentorship led to Time/Energy Demands where mentors invest their time and resources to provide mentorship. Participants also reported some difficulties establishing Boundaries between themselves and mentees: “A mentee that is calling me every single day gets to the point where it’s too much or it’s overbearing, then you’ll have to say something, whether it’s to one of my supervisors here or not” (Joseph, mentor, complete paraplegia). Participants also reported a Lack of Engagement as feeling difficult or discouraging to work with unmotivated/uninterested mentees.

Discussion

Our study aimed to garner an understanding of outcomes of SCI peer mentorship from multiple perspectives. Our results have identified SCI peer mentorship outcomes not previously researched and brought attention to negative outcomes experienced by peer mentors. As such, this outcome-focused study highlighted the importance of looking at both positive and negative outcomes of mentees and mentors.

Similar to past studies, participants discussed outcomes such as hope, engagement in daily and social activities, and management of emotions [4, 6, 7]. Further, our study confirms that feelings of confidence (self-efficacy/competence) as a consistent outcome of SCI peer mentorship [4, 7, 8] and should be considered when evaluating SCI peer mentorship programs/interventions. However, other outcomes such as feeling understood have not been reported in previous SCI peer mentorship studies. Instead, the concept of understanding is discussed as a process/style of peer mentorship (e.g., mutuality of SCI experiences [7], providing empathy [20,21,22]). There maybe a missed opportunity to investigate the concept of understanding/feeling understood as an outcome in this context.

Feeling understood is a different concept from approaches or styles that support feeling understood [23]. Feeling understood can be defined as the belief “that another person ‘gets the facts right about me’ and also appreciates how the ‘self’ experiences the social world” (p. 2). This definition reflects our participants’ mentorship experiences and the experiences of others in different domains, including peer mentorship studies in mental health [24] and type 1 diabetes contexts [25]. Further, feeling understood maybe a proximal outcome of human interactions, such as in peer mentorship, that leads to broader outcomes. For example, university students reported greater life satisfaction on days they felt understood [26]. Similar findings maybe found in a SCI context, but the SCI peer mentorship literature has not embraced the notion of ‘feeling understood’ as an outcome. Our result suggests that greater emphasis can be placed on proximal/direct outcomes (e.g., understanding) rather than broader/indirect ones (e.g., quality of life).

A negative outcome that was reciprocal for both mentors and mentees was a lack of connection. Sharing the same disability may not be sufficient for high quality mentorship experiences [27] and little research exists on the important matching criteria for peer mentorship relationships [28]. Recently, Gainforth et al. described that matching characteristics should be more focused on interest and lived experience, which differs from traditional models matching on level of injury/sex [23]. As such, community-based SCI organization may need to consider matching criteria as a way to foster stronger connections between mentors and mentees.

Peer mentors also experience outcomes when engaging in peer mentorship [29]. In our study, personal growth, giving back, and an increase in self-confidence and pride were identified outcomes for mentors. Further, the reciprocal benefit of peer mentorship also assisted in co-learning problem-solving skills and building a sense of community. Our results also highlighted negative elements of peer mentorship for mentors. For one, discussions arose around boundaries and the friendship/non-friendship lines. The challenge of establishing boundaries is appearing more frequently in the peer mentorship literature [20]. Brown et al. highlighted that foster care peer support volunteers expressed concerns regarding boundaries, showing that this topic requires greater attention [30]. We may need to reach out to other professional care practices (e.g., psychologist) to learn how such boundaries are established in those contexts to provide support to SCI peer mentors.

Participants also highlighted the emotional toll and the impact of negativity that mentors feel from providing mentorship. One explanation is that mentors might be experiencing compassion stress/fatigue. Compassion stress/fatigue is an emotional outcome resulting from helping others who are in difficult situations. It has often been observed in nursing [31] and psychological professions [32]. Given mentors highlighted the potential emotional toll and the impact of reliving their SCI, mentorship programs need to be mindful about finding ways to support mentors, including helping them identify early signs of compassion fatigue. The importance of providing this type of training for SCI peer mentors was recently highlighted by Hoffman et al. [33]. Community organizations and researchers may need to work together to better understand how to best develop training materials and strategies to support mentors experiencing compassion fatigue.

Limitations

All interviews were performed via phone or Skype due to the national scope of the research. Compared to face-to-face methods, breakdowns and misunderstandings in communication maybe more likely to arise in such distal interviews [34]. However, the interviewer LH had previous experience in conducting virtual interviews for other projects. We interviewed a wide range of individuals, including those who received, provided, or supported mentorship. However, we did not differentiate by province, mentorship role, time since engaged in peer mentorship. We also did not differentiate between hospital and community-based outcomes as participants were all community-dwelling individuals and were asked about the impact of peer mentorship in general. Few mentees reported negative outcomes of SCI peer mentorship which maybe because we did not interview people who stopped peer mentorship due to negative experiences. Thus, future research could interview individuals who stopped peer mentorship and determine if there are outcomes specific during rehabilitation and in the community.

Conclusion

This study provided an account of possible positive and negative outcomes of SCI peer mentorship programs delivered by community-based organizations. As such, these programs are an important resource for those directly or indirectly engaging in these programs. These results will inform our team’s goal to co-develop a community-friendly peer mentorship evaluation tool to effectively and accurately evaluate the impacts of SCI peer mentorship programs delivered by community-based organizations.