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The Yale Journal of Biology and Medicine logoLink to The Yale Journal of Biology and Medicine
. 2024 Sep 30;97(3):271–280. doi: 10.59249/YXEB6783

There Is More to Life Than Walking: A Qualitative Study of Survivorship Among Peer Mentors in the Spinal Cord Injury Community

Teimur Kayani a,1,*, Robert Cotter a,1, Jonathan Sigworth b, Benjamin Doolittle c
PMCID: PMC11426298  PMID: 39351326

Abstract

Objective: To identify factors impacting survivorship among people living with spinal cord injury (SCI) and volunteering in a peer mentorship program. Research Method/Design: Semi-structured interviews were conducted by a leader of a non-profit organization designed to promote independent living after SCI. Questions explored intrinsic factors such as resilience and emotional coping as well extrinsic factors such as family support and accessibility challenges that impacted their SCI survivorship journey. Two independent anonymous reviewers conducted thematic analysis to identify these factors. Results: Twenty-eight members of the SCI peer mentorship program participated. Four themes affecting survivorship were identified: Sense of Achievement, Post-Injury Growth, Post-Injury Challenges, and Giving and Receiving Support. Nearly all participants focused their responses on Post-Injury Growth and Giving and Receiving Support as reasons for their interest in serving as peer mentors. Conclusions: This study highlights a need for peer community integration following SCI and underscores the importance of using a community-driven participatory model to inform and guide research. Peer mentorship programs can link SCI survivors to mentors and facilitate other sources of social fulfillment and thus can have a profound impact on individuals’ survivorship post-SCI. This study identified a Sense of Achievement, Post-Injury Growth, Giving and Receiving Support, and Post-Injury Challenges as factors that most impact the SCI survivorship journey. This community leader’s work underscores the importance of cognitive framing and social networks in post-injury rehabilitation in this population. Future directions include analyzing the longitudinal effects of peer mentorship participation on life satisfaction and community building in individuals living with SCI.

Keywords: spinal cord injury, peer mentorship, survivorship in spinal cord injury, qualitative interview, community-derived research, cognitive framing

Introduction

Spinal cord injury (SCI) produces a spectrum of physical challenges, ranging from sensory, motor, and autonomic deficits. Years of physical and psychological rehabilitation are often required to provide survivors with independence and improve quality of life (QoL). While remarkable improvements in SCI-related mortality and physical morbidity have been achieved over the past century, the unique psychological and social challenges faced by individuals living with SCI – such as social isolation, community reintegration, and physical dependence – have been neglected [1,2]. A 2015 meta-analysis found a prevalence of depression of 22% in SCI [3] survivors compared to 11% in the general population [4]. Another study demonstrated that people living with SCI are 1.33 times more likely to suffer new-onset anxiety or depression compared to age and comorbidity-matched controls without SCI [5]. Existing evidence suggests a need for increased detection of mental health challenges and targeted interventions to optimize mental health and improve emotional support in the SCI community.

Peer mentorship programs are being recognized as an increasingly popular resource for SCI survivors [6,7]. A qualitative meta-synthesis of 21 studies on SCI peer mentorship revealed a variety of positive outcomes from such interventions, including increased independence and social reintegration [8]. While the recognition of the importance of peer mentorship is a step forward in improving SCI care, SCI survivors have expressed the desire for more community-based participatory research and greater involvement in study design and execution, as opposed to serving predominantly as study participants [9]. Engaging SCI survivors as partners and consultants can elucidate factors that impact survivorship following SCI that can be targeted for future study and the development of novel interventions [10-12].

This work represents a novel community-driven qualitative initiative involving analyses of 28 individual interviews of SCI peer mentors. Interviews were designed and conducted by a leader in the SCI community. Here, we examine these interviews with the aim of identifying factors that impact SCI survivorship.

Methods

More Than Walking (MTW) is a non-profit organization that was founded in 2017 to promote independent living after SCI. The Peer Mentor Program of MTW was implemented to seek and foster participation of SCI affectees who may be interested in serving as peer mentors for other affectees, from across the United States through SCI support group networks and social media platforms. The primary goal of this study was to better understand characteristics that relate to an individual’s ability to overcome the significant adversity of SCI among those participating in a peer mentorship program.

Interested individuals participated in a virtual interview session with the MTW president (JS), who lives with a C7 SCI himself, between 2019–2021. The proceedings were recorded with permission and transcribed for future outreach and research purposes. Virtual interviews were semi-structured (Appendix A) and were standardized to include 16 questions that served to garner unique characteristics of each volunteer’s story and allowed for assessment of factors affecting SCI survivorship and the desire to mentor SCI-affectees (Appendix A). Our interviewer designed each of interview questions based on his own lived experience of combating SCI-related challenges and serving as a SCI peer mentor for nearly a decade. Each session lasted about 1 hour. This study centered on review of existing anonymized data and was approved by the Yale University Institutional Review Board (IRB # 2000022828).

Qualitative Analyses

Anonymized interview transcripts were made available to the research team. An iterative, thematic analysis approach as described by Clarke et al. was employed by the two co-first authors, who were not involved in the initial interviews [13]. The themes uncovered by this initial review were then discussed among all four members of the research team until consensus was reached on overarching major themes and sub-themes.

Results

Data from transcribed interviews from 28 SCI peer mentors were available for analyses. Table 1 describes the demographic variables of the study participants.

Table 1. Demographic Characteristics of Participants (n=28).

Age at Time of Interview N
  20-29 2
  30-39 6
  40-49 9
  50-59 7
  60-69 4
Sex N
  Female 8
  Male 20
Race/Ethnicity N
  White/Caucasian 23
  Black or African American 2
  Hispanic, Latino, or Spanish 1
  Native Hawaiian or Pacific Islander 1
  Asian 1
Spinal Cord Injury Levels * N
  Complete (n=12), Incomplete (n=16) **
  C1-3 2
  C4 4
  C5 2
  C6 6
  C7-8 1
  T1-9 6
  T10-L1 7
Years Post-Injury N
  Range 1 – 46
  Median 17
  Mean 18

*Participants self-identified their own level of injury. Where multiple levels of injury were indicated by an individual, the highest level was included. ** The number of incomplete injuries represented in the total for each category is as follows: 1 (C1-3), 3 (C4), 1 (C5), 3 (C6), 1 (C7-8), 3 (T1-9), 4 (T10-L1). The remaining number were complete injuries.

Four themes and 14 sub-themes related to SCI survivorship and interest in SCI peer mentorship emerged from semi-structured thematic analysis: Sense of Achievement, Post-Injury Growth, Giving and Receiving Support, and Post-Injury Challenges were the four major themes (Table 2). Identified sub-themes are also listed in Table 2.

Table 2. Five Themes and Associated Sub-themes Involved in SCI Survivorship Across 28 Interviews of Peer Mentors.

Sense of Achievement Giving and Receiving Support
• Feelings of Progress •Community and Family
• Wisdom or Perspective Gained • Desire to Serve
• Independence and Belonging
Post-Injury Growth Post-Injury Challenges
• Resilience and Optimism • Depression, Embarrassment, Shock, and Fear
• Perspective on Walking • Isolation and Denial
• Gratitude • Comorbidities
• Accessibility Challenges
• Lack of Community Support
• SCI-Related Relationship Damage

Sense of Achievement

Many participants commented on their journey with SCI as being one filled with personal growth in the form of either progress, achievement, perspective, or wisdom gained. Generally, this theme was a product of the physical, structural, and social challenges that participants faced and their learned responses to those challenges. Expressions of gratitude for some of the changes in perspective that participants experienced because of their SCIs were common, as were mentions of injuries serving as a source of unique opportunity.

“I hate to use the word thankful, but being able to see what I’ve been able to do because of my chair, that a wheelchair has taken me places that I never dared to imagine is what I like to say.” Age 49, C6-7 Complete Tetraplegic, 32 Years Post-Injury

“I would’ve never gone to college had it not been for my spinal cord injury. I never would’ve thought about it, nor would I’ve ever had the funds to do it.” Age 52, C6 Incomplete Tetraplegic, 32 Years Post-Injury

“I wouldn’t be the man I am today if I had not been put in a wheelchair 16 years ago, and if I never walk another day on this earth, I am grateful for the man it has made me.” Age 38, C4-5 Incomplete Tetraplegic, 16 Years Post-Injury

Participants also shared their perspectives on finding happiness and fulfillment following SCI. One participant stressed that life after injury operates on similar paradigms of emotional wellness as prior to injury:

“It’s just about finding happiness with whatever we have. And if I can’t find happiness in the chair, I’m not going to find happiness when I’m able to walk again if that day ever comes.” Age 52, C3-4 Incomplete Tetraplegic, 5 Years Post-Injury

Many participants mentioned initial struggles with physical, emotional, and social challenges that originally inhibited their independence and negatively affected self-perception. Despite the initial hurdles, participants also frequently noted changes in perspectives and experiences over time that led them to change the way they see their new realities post-SCI; feelings of increased agency, independence, and normalcy with passing time were frequently voiced.

“My son still looks at me and calls me Superman and I’m still his hero and we still play catch, and he pushes me around, and I chase him around, and we still wrestle, so I feel like nothing has changed other than my legs don’t work.” Age 30, C6-7 Incomplete Tetraplegic, 3 Years Post-Injury

“I’m always asked the question why aren’t you in a motorized wheelchair, I’m like well, ‘Listen, I have upper body strength, I’m lucky enough to have that.’ I have the ability to use my arms and my hands. I want to be as independent as I possibly can, so that’s my primary goal.” Age 46, L1-5 Incomplete Paraplegic, 46 Years Post-Injury

“I don’t want to spend [time] vegging in front of a TV or stuck in the seat of a wheelchair if I can help it. I get down on the floor and play with my grandchildren, I wrestle with them, I do everything that I would normally have done if I had two working legs. It’s fun.” Age 70, T9-L1 Incomplete Paraplegic, 25 Years Post-Injury

One participant noted this change in perspective about the loss of physical abilities when asked about what advice he gives to individuals facing recent SCI:

“Don’t wait until you’re walking to start living life. That’s great, that’s great if you start walking again. I hope you do, I pray for you, and don’t ever lose that faith that you’re going to, but for today let’s live life like this is what we have… Don’t wait until you’re walking to start living life, go ahead and start doing that now.” Age 52, C6 Incomplete Tetraplegic, 32 Years Post-Injury

Post-Injury Growth

One of the most prevalent themes in participant responses was the concept of growth following the physically and emotionally traumatic experiences of SCI, the process of rehabilitation, and eventual setting of a new normal. Participants frequently exemplified resilience, optimism, humor, and vulnerability when asked what advice they would give to those newly experiencing SCI. Their passion for peer mentorship is evident:

“Don’t be afraid to try anything you can. If you’re going to sit in a chair and give up, you will not advance. You have to get off your butt, figuratively obviously, and figure a way to move forward in life where you will succeed, and not everybody can do this.” Age 70, T9-L1 Incomplete Paraplegic, 25 Years Post-Injury

“You’re going to have falls mentally, spiritually, don’t be afraid to fall because if you can survive this, then you can survive anything thrown at you.” Age 37, T12 Incomplete Paraplegic, 16 Years Post-Injury

Others’ advice focused on messages of optimism that centered around finding meaning and inspiration to carry on through the many physical and emotional complications that SCI survivors face:

“Find those lights, those moments, and be like today is going to be a good day. Whatever it is, keep the positivity and make yourself smile… keep your motivation going and give you the best quality of life that you can have moving forward.” Age 31, T7-8 Incomplete Paraplegic, 6 Years Post-Injury

Many participants’ responses also centered on the topic of being able to walk again. This theme is the basis for MTW, as it encourages SCI survivors to aspire for something greater than simply returning to a previous level of physical ability.

“Walking again is not necessarily a goal because… the chair is a part of my body. I’m settled … I guess the goal is to be settled, to be happy with your life and to be satisfied with what you got and not disappointed or angry that something happened.” Age 46, C6 Incomplete Tetraplegic, 18 Years Post-Injury

“I don’t need to walk to be happy. I just need to be me to be happy … I will tell you boldly how it is, and that is just the way I am … nothing has changed about me except for my means of transportation.” Age 54, T10-11 Complete Paraplegic, 28 Years Post-Injury

Post-Injury Challenges

Interview responses highlighted some of the many emotional challenges that SCI survivors face, including sadness, depression, embarrassment, shock, fear, isolation, and denial. Participants described how these challenges impacted their life following SCI. Many of these comments focused on the emotional trauma caused by their injuries as well as the deleterious effects of the absence of social support.

“I remember every single second of my accident. So, for a long time I dealt with nightmares. My wife will tell you that I woke up numerous times reliving it in my dreams ... People don’t understand, they can look at you and see what you’re going through, but until you’re sitting in my chair, and you feel like your legs weigh 400 pounds apiece and you can’t move them, it’s just not the same feeling.” Age 37, T12 Incomplete Paraplegic, 16 Years Post-Injury

“When I get in that mindset ... I’m down, I don’t want to do anything, I’m not productive, I’m not productive in my job, I’m not productive in my daily life.” Age 31, T7-8 Incomplete Paraplegic, 6 Years Post-Injury

“If you stay to yourself and don’t talk to anybody when people are reaching out trying to have something to do with you, you will eventually be left there by yourself and not have anybody.” Age 38, C4-5 Incomplete Tetraplegic, 17 Years Post-Injury

One participant specifically discussed situations of conflict between his pride in remaining independent and the practical need to sometimes ask for assistance and how that interplay can negatively impact his life satisfaction and daily functioning:

“I didn’t want to ask for help. That is the biggest and one of the most challenging things to face as somebody who is injured, is to ask for help… If somebody offers, I might take you up on it; I will be very thankful for the offer, but my pride and my independence don’t allow me to take help, so that’s a huge barrier.” Age 31, T7-8 Incomplete Paraplegic, 6 Years Post-Injury

Unfortunately, many participants noted that certain environmental factors can also negatively impact life following SCI. These negative extrinsic factors include logistical concerns surrounding accessibility challenges in a variety of settings:

“To me the greatest barrier to freedom was transportation. And whether you have your own vehicle or you have access to bus lines in your city or town, that’s a big difference to me in making a step towards independent living, is being able to get out in the world.” Age 60, C6-7 Complete Tetraplegic, 11 Years Post-Injury

“I had to be an advocate for myself, I had to just push, push, and push so that my college experience was as accessible to me as it could possibly be.” Age 46, L1-5 Incomplete Paraplegic, 46 Years Post-Injury

Struggling to prevent, treat, and recover from comorbidities frequently associated with acute and chronic SCI was often noted by participants to create further hurdles in addition to the challenges incumbent in post-SCI life.

“I think walking is on the bottom of my list when it comes to living with a spinal cord injury. First and foremost, for me I think it would be just keeping my butt intact, preventing any skin breakdown… [I]t’s not the wheelchair that is the issue, it’s all the other secondary issues that come along with a spinal cord injury.” Age 49, C6-7 Complete Tetraplegic, 32 Years Post-Injury

“The biggest thing I would address is watch for bedsores, because to me that was the biggest reason that I’m still in a chair and not walking, because I was laid up twice for six to eight months and that muscle mass you just cannot get that back.” Age 45, L1 Incomplete Paraplegic, 19 Years Post-Injury

Additionally, prolonged negative social and community or family factors were frequently noted challenges in our participants.

“The main barrier is having people not see the chair and see the person that I am and not the disability.” Age 47, L1 Complete Paraplegic, 15 Years Post-Injury

“I mean it’s really sad to say but at the time of your life when you need family and friends the most, a lot of them seem to leave or treat you differently or look at you differently.” Age 37, T12 Incomplete Paraplegic, 16 Years Post-Injury

“But the number one thing that you have to do, it doesn’t matter how bad it is, don’t get negative on the people around you, because they will leave you. If you get bitter and get angry with the people that are there, they’re not going to put up with it, and then you’re going to be stuck with nobody.” Age 38, C4-5 Incomplete Tetraplegic, 17 Years Post-Injury

Giving and Receiving Support

Family and community support was an extremely prevalent factor in SCI survivorship in most of our interviews. Interestingly, it was both the receiving of support from family and community and the giving of support to others (often within the SCI community) that arose as prevalent themes behind SCI survivorship and interest in providing peer mentorship. Giving and receiving these acts of support were equally represented in thematic prevalence.

“If I was so focused on walking …. I think I would lose track of what actually brings me joy in life, which is my family and my friends and cooking dinner for the people that I love or doing projects and things.” Age 31, T7-8 Incomplete Paraplegic, 6 Years Post-Injury

“I gained my independence; I have to give credit to those people in my life. I have an amazing mother and boyfriend and dad and brother who helped me with everything. I mean my mom helped me clean; my dad helped me build my house; my brother is a paramedic, he’s helped me off the floor a lot; my boyfriend does everything, like things I could never imagine asking anybody else to do; and he just does them without asking. So, without this team of people, I couldn’t be where I am.” Age 31, T7-8 Incomplete Paraplegic, 6 Years Post-Injury

“But you can’t let things get you down and keep you down. Don’t live about the chair or for the chair, do it for yourself and your family, and your loved ones.” Age 47, L1 Complete Paraplegic, 15 Years Post-Injury

Throughout the interviews, many participants expressed that giving back to the SCI community in some capacity, often through peer mentorship, was enriching and uplifting. They also frequently noted that peer mentorship was beneficial both as the mentor and as the mentee in their respective survivorship journeys.

“Because of my injury, it’s very limited, some of the things I can do physically, but I still have a voice, and I still have a passion. And if there is anybody that I can help out on this planet I will do so…. I’m always here to help.” Age 52, C3-4 Incomplete Tetraplegic, 5 Years Post-Injury

“So no, [walking isn’t] the most important thing in my life. Now I just want to be as good of a person as I can and do what I can to try and help others.” Age 52, C5 Incomplete Tetraplegic, 36 Years Post-Injury

“I mean the strongest, most intelligent people that I’ve met are wheelchair users that I have met because I’ve been injured, and they have given me motivation just to be a better person in life. I would’ve never met those people if I wasn’t injured. I would’ve never had this outlook on life.” Age 31, T7-8 Incomplete Paraplegic, 6 Years Post-Injury

“I had the belief when I was in the hospital and early on that there were a lot of other people who live with this condition and are successful and live fulfilling lives and so I had the mindset like that was possible for me too, but ultimately meeting those people and becoming friends with those people that’s what got me over those humps.” Age 32, C4-5 Incomplete Tetraplegic, 7 Years Post-Injury

“I truly think that the main thing that this whole wheelchair experience has taught me is sometimes it’s not about what you need or what you want, it’s what can you do for somebody else that’s in the same situation that you’re in.” Age 45, L1 Incomplete Paraplegic, 19 Years Post-Injury

Discussion

Here we present a qualitative, community-driven study exploring factors affecting SCI survivorship in a cohort of peer mentors living with SCI. These interviews examine the life journeys of SCI survivors pre- and post-injury. These experiences ranged from moments of profound powerlessness to the discovery of agency, from depressed states to prideful moments, and from feelings of being lost in a new world to now having the desire to support new survivors. Responses of interviewees reveal wisdom born from significant trauma that have inspired their decisions to serve as mentors to new survivors of SCI. In the world of disability-related research, there is a glaring need for community-based research that accurately reflects the attitudes, perspectives, and desires of those afflicted by illness and the unique physical and psychological challenges that present in its aftermath [9]. A qualitative meta-synthesis among people with SCI who participated in community-based projects evaluated 21 peer-reviewed studies [8]. The emergent themes from this meta-synthesis demonstrated similar themes to this project: enhanced self-sufficiency, personal growth, greater participation in activities, improved adaption, obtaining improved knowledge, improved adaption to disability, and improved social connection. This project enhances the extant literature by highlighting the roles of a sense of achievement, post-injury growth, post-injury challenges, and giving and receiving help.

Although many of our participants are far removed from their initial injuries, their experiences present valuable insight into the long-term progression of life challenges following SCI. These interviews provide insight into 28 journeys to agency across a wide range of spinal cord injuries. Themes identified in this analysis reflected intrinsic qualities that proved instrumental in their survivorship journey, valuable external support systems, and details of the many hurdles in their paths to recovery. Resilience, optimism, gratitude, and humor were all traits that enabled participants to learn from their experiences and derive satisfaction from their progress. These traits represent potential domains for psychological and social interventions to target to augment SCI survivors’ progress post-injury. Most participants who spoke about a Sense of Achievement also discussed Post-Injury Growth, where they credited their progress to a sense of resilience, optimism, and gratitude that carried them through moments of perceived weakness.

The interviewer across each encounter was the President of More Than Walking, an organization that focuses on improving quality of life following SCI through peer support, mentorship, and digitized physical rehabilitation resources. It is therefore not surprising that ambulation was a frequently enquired topic discussed during interviews. MTW’s namesake is derived from its bold assertions that there is more to life and rehabilitation following SCI than regaining the ability to walk. MTW mentors, as all SCI patients must, frequently confront their own perceptions and desires related to regaining the ability to walk and support peers in their journey toward acceptance of current physical abilities and life circumstances. Our participants thus frequently expressed ambivalence about returning to ambulation, and instead endorsed appreciation of current functional abilities, the importance of health maintenance, and striving for more readily attainable rehabilitation goals. Also, participants focused on deriving life satisfaction from internal sources as more effective and practical approaches to life following SCI.

While the themes of Sense of Achievement and Post-Injury Growth center on individual factors in SCI survivorship, all participants in our study heavily credited community and family factors in sustaining their survivorship journey by Giving and Receiving Support. The sub-theme of community and family involvement highlights the need for social connection post-SCI. While similar findings have been identified in previous qualitative studies with SCI survivors [14], a novel pertinent sub-theme that emerged during interview analysis was the desire to serve the SCI community. This finding was likely influenced by the fact that our study population was composed entirely of peer-mentors for SCI survivors; participants noted that being able to guide others through the process of recovery was an action that brought them a unique sense of fulfillment.

Importantly, many deleterious factors influencing SCI survivorship were identified within the theme of Post-Injury Challenges. They included a lack of social support, logistical challenges incumbent in living with an SCI, medical and psychiatric comorbidities, and accessibility issues that were all prevalent and impactful and remain as challenges to be addressed for those supporting and caring for SCI survivors. Horn et al. have previously demonstrated that comorbidities and accessibility challenges are some of the largest hurdles that SCI patients face following injury [15]. Our participants demonstrated that while the former factor is often not modifiable, the latter certainly is. Some of our participants discussed how they helped install a variety of accessible infrastructures, such as ramps and elevators, in their college campuses and workplaces. The lack of accessible infrastructure in many professional and public spaces prevents those living with SCI from experiencing many dimensions of normal living, but simple adjustments can produce a significant impact in quality of life in this population.

Engaging with the SCI community is often neglected when addressing the needs of SCI survivors through research. The interviews examined in this study highlight a need for peer community integration following SCI and underscore the importance of using community-driven participatory research to inform and guide relevant investigations. Peer mentorship programs can link SCI survivors to potential mentors and facilitate other sources of social fulfillment and thus can have a profound impact on individuals’ survivorship post-SCI. This study identified a Sense of Achievement, Post-Injury Growth, Giving and Receiving Support, and Post-Injury Challenges as factors that impact the SCI survivorship journey. Participants repeatedly demonstrated that their self-perceptions as adding value to various social groups significantly impacted their post- SCI journey. The concept of deriving benefit not simply from social groups but also from one’s perception of their contributions to them was a topic that we have not found elsewhere in SCI qualitative literature. Future studies should engage individuals living with SCI to inform relevant research questions and investigate targets for novel interventions to improve SCI survivorship within these domains, such as peer mentorship and community-building programs, psychotherapeutic modalities, and methods of alleviating accessibility issues and medical comorbidities of SCI.

Despite these meaningful insights, this work has limitations. We recognize that this study is limited by its sample homogeneity and the use of a single interviewer. Our study focused exclusively on peer-mentors in the SCI community, which limits the generalizability of our findings surrounding SCI survivorship. However, the unique perspectives of motivated peer mentors do offer an important model for SCI survivorship. That the majority of our participants were White males is a reflection of the gender distribution of people living with SCI in the US [16]. However, the lack of ethnic diversity suggests that important perspectives may have been missed among minority groups. That all interviews were conducted by a single interviewer renders the susceptibility to personal bias. Despite these limitations, we maintain that the organic nature of the research design and execution by a leader in the SCI community with lived experience provides a community-driven insight that is sorely needed in modern disability research. We believe that this unique design allowed for a level of rapport, emotional depth, and insight that would not have occurred if a non-SCI academic researcher whose knowledge was entirely grounded in theory, were to design and conduct these interviews.

Conclusions

We present a community-driven project that was designed by a leader and peer mentor in the SCI community examining factors in survivorship in a cohort of 28 peer-mentors living with SCI. Deriving research aims from community perspectives and including community members in the design and execution of research are paramount to not just to understand the lived-experience of SCI survivors but also for conducting meaningful, authentic research. Rectifying the inequitable power dynamics that have characterized researcher-participant relationships for centuries, especially those among historically disenfranchised study groups like the participant-partners of varying degrees of physical ability, as in this study, must be prioritized as a goal for future research endeavors. The relevance of our findings to our participant-partners is this work’s greatest strength and, to our knowledge, serves as the first example of community-driven qualitative survivorship analysis in the field of SCI.

Glossary

SCI

spinal cord injury

MTW

More Than Walking

Appendix A.

Author Contributions

TK (ORCID: https://www.orcid.org/0000-0002-8564-5777) and RC (ORCID: https://www.orcid.org/0000-0002-7535-6576): Lead and performed all interview analyses; responsible for drafting and editing all sections of this paper. JS (ORCID: https://www.orcid.org/0000-0002-0811-9327): Designed and conducted all interviews of peer mentors; oversaw methods and discussion sections of paper. BD (ORCID: https://www.orcid.org/0000-0002-6922-6556): Provided oversight for each aspect of this paper, provided edits for all sections. Provided assistance with shaping iterative analyses.

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