The Spinal Cord Injury and You (SCI U) intervention aims to improve self-management skills for persons living with SCI using a web-based, peer health-coaching model. This study assessed feasibility of a future definitive trial of SCI U, specifically feasibility of recruitment and retention, program usability and quality, effect size estimates for self-management outcomes and rehospitalisation rates (i.e. health-related quality of life). A two-group, randomised, controlled, pilot trial with prospective recruitment, concealed group allocation, blinded outcome evaluation and waitlist control was conducted. We aimed to recruit 60 adult participants living in the community at least 6 months post-injury who could speak and read English and had a family physician. The intervention included up to 14 1-h online client-coach videoconferencing sessions, goal setting, action planning and a sortable resource library. Data were collected at baseline, 2, 6 and 12 months post-randomisation. SCI U was offered to waitlist participants at 12 months. Trial methodology and procedures were feasible. Recruitment and retention targets were achieved. Individuals were randomised to intervention (n = 31) and waitlist control (n = 34). Mean time since SCI was 25.6 years (intervention) and 20.2 years (control). Timeline for completion of online sessions was extended from 2 months to 6 months. Outcome data were gathered for 86

CONTEXT:Spinal cord injury (SCI) community-based organizations (CBOs) have the potential to inform research so that findings are more relevant and applicable. To support SCI CBOs to meaningfully engage in research partnerships, an understanding of their context is needed. OBJECTIVE:Identify and describe the context of Canadian and American SCI CBOs that offer programs and services to people with SCI. METHODS:An environmental scan was conducted using an integrated knowledge translation approach. A list of Canadian and American SCI CBOs was created using community partners' networks and national-level nonprofit organization search engines. Data from CBOs' websites on programs and services, mission/vision statements, commitments to inclusion, diversity, equity, accessibility, and social justice (IDEAS), financial information, and research/research partnership activities were extracted and analyzed abductively. RESULTS:Two hundred two SCI CBOs were identified. CBOs were described using 34 co-developed categories: organizational statements (n = 8), IDEAS commitments (n = 10), and programs/services offered (n = 16). Revenue and expenses varied greatly across SCI CBOs. Study recruitment advertisements, knowledge translation tools, and research-informed articles were how websites discussed research. Descriptions of engagement in research partnerships varied. CONCLUSION:This environmental scan was used to identify, collate, and describe contextual factors of SCI CBOs from non-peer-reviewed sources, representing an initial characterization of SCI CBO context, grounded in SCI CBO representatives' perspectives. This initial characterization can support researchers, research users, and funders to build capacity for the meaningful engagement of SCI CBOs in research partnerships, such as informing the design of research projects and grants that align with organizational values and account for financial constraints.

PurposeWe examined (1) the feasibility and acceptability of a tailored self-compassion program for peer mentors in Canadian spinal cord injury (SCI) community service organizations and (2) its effectiveness in improving compassion fatigue. compassion satisfaction, self-compassion, and mental health from pre to post and pre to 6-week follow-up.MethodsWe co-developed this study with two Canadian SCI organizations. Fifteen peer mentors completed the self-compassion program. Each participant completed three surveys (pre/post/6-week follow-up) and two interviews (post/6-week follow-up). Non-parametric tests were used to examine quantitative changes in the outcome variables. Qualitative data were analyzed using directed content analysis (feasibility and acceptability data) and thematic analysis (effectiveness data).ResultsThe program was feasible and acceptable. Compassion fatigue decreased from pre to post and pre to follow-up. Total self-compassion and mental health increased from pre to post and pre to follow-up. Four themes were identified: from a self-critic to a self-ally, being a better peer mentor, building resilience, and benefits to the organization. At follow-up, peer mentors had evolving perspectives of the self and improved mental health.ConclusionsThe results from this study provide insight into the benefits of a tailored self-compassion program for peer mentors, the mentees they provide care to, and the organizations delivering the peer support programs.

OBJECTIVE:To evaluate the effectiveness of the ProACTIVE SCI intervention on physical activity (PA) behavior and psychosocial predictors among people with spinal cord injury (SCI). DESIGN:Pre-post trial. SETTING:Community. PARTICIPANTS:Twenty-eight participants (N=28) with SCI (19 men and 9 women, 50±14y). INTERVENTIONS:One-year PA coaching after discharge from rehabilitation provided by SCI-peers. MAIN OUTCOME MEASURES:Primary outcome measure was minutes and days engaged in aerobic and strength-training PA over a 7-day recall period. Secondary outcome measures included psychosocial outcome measures and a semistructured interview that explored effects of the intervention on physical and mental health, intervention satisfaction, and satisfaction with life. RESULTS:Time engaged in aerobic PA was maintained from baseline to both 6-months and 1-year post discharge (all P>.23). The d/wk of strength-training moderate-to-vigorous PA (MVPA) increased from baseline to 6-month (2.1±2.7 vs 4.0±2.7d/wk, d=0.70, P<.01) and 1-year postdischarge (3.0±2.5d/wk, d=0.35, P=.54) (main effect P=.03) as did the percentage of participants meeting SCI-specific strength-training PA guidelines (P=.029). There were no statistically significant changes in psychosocial outcomes; however, there were moderate-sized effects for increased strength exercise task self-efficacy and self-monitoring at both 6-months and 1-year postdischarge (d=0.42-0.56). Analysis of semistructured interviews revealed 4 themes regarding PA coaching after discharge from rehabilitation: physical health, mental health, sense of community, and time. Participants reported high levels of satisfaction with the program (5.5±0.68 on a 6-point scale). CONCLUSIONS:We explored the effectiveness of SCI peer-led PA coaching after discharge from rehabilitation in individuals with SCI-which is typically associated with reduced PA participation. Aerobic MVPA participation was maintained for 1-year, and strength-training MVPA participation significantly increased at 6-months postdischarge. These findings are important as they describe an effective strategy for maintaining PA during the transition from rehabilitation to the community-living in individuals with SCI.

Background Engaging knowledge users in health research is accelerating in Canada. Our objective was to examine perceptions of partnered health research among individuals involved in funded Canadian partnered health research projects between 2011 and 2019. Methods We invited 2155 recipients of 1153 funded projects to answer a questionnaire probing project characteristics and perceptions of partnered health research. We described and compared perceived effects of involving knowledge users in the project, team cohesion, capability, opportunity and motivation for working in partnership between two categories of respondents: project role [nominated principal investigators (NPIs), other researchers and knowledge users] and gender. Findings We analysed data from 589 respondents (42% NPIs, 40% other researchers and 18% knowledge users; 56% women). Among the perceived effects variables, the proportion of ratings of significant influence of involving knowledge users in the project ranged between 12% and 63%. Cohesion, capability, opportunity and motivation variables ranged between 58% and 97% agreement. There were no significant differences between respondent groups for most variables. NPIs and women rated the overall influence of involving knowledge users as significant more than other respondent groups ( p < 0.001). NPIs also reported higher agreement with feeling sufficiently included in team activities, pressure to engage and partnerships enabling personal goals (all p < 0.001). Conclusions Most respondents held positive perceptions of working in partnership, although ratings of perceived effects indicated limited effects of involving knowledge users in specific research components and on project outcomes. Continued analysis of project outcomes may identify specific contexts and partnership characteristics associated with greater impact.

INTRODUCTION:A large decrease in physical activity (PA) is typically observed among people with spinal cord injury (SCI) upon discharge from in-hospital rehabilitation. Physiotherapists and SCI peers are well-positioned to intervene at this critical timepoint; however,the implementation of coordinated PA interventions between these two groups have yet to be studied. PURPOSE:To identify barriers and facilitators that affect the implementation of coordinated PA counseling among physiotherapists and SCI peers during the transition from in-hospital rehabilitation to the community. METHODS:Semi-structured interviews were conducted with nine physiotherapists and two SCI peer coaches, using an interview guide informed by the Theoretical Domains Framework (TDF). Interviews were transcribed and coded deductively onto the TDF with themes and subthemes generated by inductive content analysis. RESULTS:The most salient TDF domains were social influences, environmental context and resources, and skills. Specifically, participants identified challenges such as addressing patient barriers and continual staff onboarding. Facilitators included the availability of peer coaches with lived experience, support from champions of the PA counseling intervention, group training sessions for physiotherapists and SCI peer coaches, and an adaptable PA counseling form as a conversation guide. CONCLUSION:Successful coordination of services provided during the transition from in-hospital rehabilitation to the community may be strengthened by 1) providing resources and training that guide both content and delivery of PA counseling and 2) a referral system that leverages the strengths of both physiotherapists and peer support.

The aim of this study was to explore the perceived relationship between inclusion and participation in social and physical activities for people with physical disabilities. In partnership with a local disability-focused non-profit organization, we completed semi-structured interviews with 12 individuals with physical disabilities. Interview transcripts were analysed using an inductive thematic approach considering the social–ecological model and quality participation framework for people with disabilities. We developed three themes to describe the relationship between inclusion and participation in social and physical activities: physical accessibility of spaces and places, advocates are needed to share knowledge, and social inclusion and social/physical activities influence each other. Participants discussed the facilitating role of social inclusion on physical and social activities and the bi-directional relationship between inclusion and community participation. Fostering social inclusion through increased accessibility, education, and awareness at the community or program level can facilitate full community participation for people with physical disabilities.

Many individuals with spinal cord injury (SCI) face a constellation of sleep disturbances that interfere with sleep initiation and/or continuity. While poor sleep is widely documented post-SCI, sleep management is often deprioritized for clinical attention. Given the potential for reciprocal impacts between sleep disturbances and additive effects on sleep outcomes, we aimed to characterise sleep routines and elucidate relationships between sleep disturbances and sleep outcomes in individuals living with SCI. We conducted an online survey with community partner SCI British Columbia for Canadians (≥19 years old) living with SCI, inclusive of all lesion levels and sensorimotor-completeness. Survey questions pertained to sleep routines, support, and disturbances assessed by frequency, severity, and management. Established questionnaires evaluated poor sleep quality (Pittsburg Sleep Quality Index [PSQI]; score≥5), daytime sleepiness (Epworth Sleepiness Scale [ESS]; score≥10), and fatigue (Fatigue Severity Score [FSS]; score≥36). We report responses from 170 individuals with SCI (aged 43.4±13.6 years, 122 male, 14.5±11.8 years injured). Most (74%) participants manage their sleep independently. However, 28.8% use non-prescription substances to support sleep, which may reflect that 67.1% of participants have not reviewed their sleep care with a healthcare provider since initial discharge. In the past 6 months, 73.5% experienced ≥1 regular sleep disturbance, 55.2% of whom reported ≥3 disturbances. These included nociceptive pain (45.6%), anxiety (44.8%), bladder care (40.0%), spasticity (37.6%), turn routines (34.4%), neuropathic pain (30.4%), thermal discomfort (29.6%), autonomic dysreflexia (episodic hypertension; 23.1%), sleep apnea (20.8%), and bowel care (19.2%). Poor quality sleep was reported by 75.3% of respondents (PSQI 8.3±4.1), with 37.7% experiencing high fatigue (FSS 30.4±15.3), and 29.4% experiencing excessive daytime sleepiness (ESS 7.1±4.6). Compared to those without, individuals with ≥1 sleep disturbance reported higher PSQI (OR=14.9, p< 0.001), FSS (OR=6.0, p< 0.001), and ESS (OR=2.0, p< 0.05) scores, with all scores highly correlated with each other, with sleep duration, and the number of sleep disturbances experienced (p< 0.005). Sleep disturbances post-SCI are highly prevalent, often occur in combination, and emerge as a determinant of global sleep health. Thus, sleep care presents as a clinical and research target with potential to improve quality of life for those living with SCI.

Establishing a multidisciplinary network of researchers, trainees, and research users-such as the Canadian Disability Participation Project (CDPP)-is a promising approach to promote and support research partnerships and improve the application of disability research findings. This study aimed to 1) describe the implementation of the CDPP network over time and 2) explore members' experiences and reflections on the implementation and maintenance of the CDPP network and its partnerships. This mixed-methods study used survey data, collected among CDPP researchers, trainees and research users in the years 2018, 2019 and 2021, and interview data, collected at the end of the study period (2021/2022). Survey items, focused on network functioning and satisfaction (implementation), were analyzed using descriptive statistics. Interviews focused on members' experiences and reflections of the implementation and maintenance of the network and its partnerships, and were analyzed using reflexive thematic analysis. Members were positive about how the network functioned and satisfied with how the CDPP implemented its plans. Over 70% of the survey participants indicated that it was easy to work with researchers/research users in the CDPP network (2018: 71%; 2019: 85%; 2021: 70%). Interview participants discussed the strong leadership of the network, the lack of feeling meaningfully connected to the network as a whole, and key principles that guide the success of individual research partnerships (implementation). Participants reported that (human) resources and continued leadership are needed to sustain the network and its partnerships long-term (maintenance). This study provides unique longitudinal insights into the implementation of a multidisciplinary network of research partnerships. The findings highlighted that building and sustaining a large network of partnerships is challenging and requires strong and continued leadership. To conclude, we describe lessons learned for research partnership capacity building and the translation of disability research to practice and policy.

Individuals who serve as peer mentors within Canadian spinal cord injury (SCI) community service organizations are reporting compassion fatigue from their roles. One psychological resource that has the potential to reduce compassion fatigue and promote overall mental health among peer mentors is self-compassion. However, there is limited knowledge of any self-compassion programs that have been tailored to address the needs of these individuals. To address this limitation, this paper outlines a protocol to examine the feasibility, acceptability, implementation, and effectiveness of a tailored self-compassion program to reduce compassion fatigue and enhance compassion satisfaction, self-compassion, and mental health among peer mentors within Canadian SCI community service organizations. The 6-week online program will be tested among 20 individuals (five separate groups of four) who serve as peer mentors within two Canadian SCI community service organizations. Feasibility and implementation data will be collected throughout the duration of the program and post program while acceptability data will be collected post program. To evaluate the effectiveness of the program, we will follow a single-group quasi-experimental design with surveys (pre/post/follow-up) and semi-structured interviews (post/follow-up). Results from this study are intended to inform the design of a self-compassion program for peer mentors within Canadian SCI community service organizations who experience compassion fatigue and reduced mental health. Providing evidence for the effectiveness of this program could prove useful for Canadian SCI community service organizations who wish to better support and retain their peer mentors and thus improve the quality of support they provide to mentees.

Study design: Guided by the 4-step process outlined in the Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) guideline, multiple methodologies were used: Delphi, literature reviews, ratings with consensus, think-aloud, and test-retest. Objectives: The purpose of this study was to develop and test a spinal cord injury (SCI) peer support evaluation tool that meets the needs of community-based SCI organizations in Canada. Setting: Peer support programs for people with SCI delivered by community-based SCI organizations. Methods: This research was co-constructed with executives and staff from SCI community-based organizations, people with SCI, researchers, and students. Given the multiple steps of this study, sample size and characteristics varied based on each step. Participants included people with SCI who received peer support (mentees) or provided peer support (mentors/supporters) and staff of community-based organizations. Results: In step 1, the 20 most important outcomes for SCI peer support were identified. In step 2 and 3, the 97 items were identified to assess the outcomes and by using rating and multiple consensus methodologies 20 items, one to assess each outcome, were selected. In step 4, content and face validity and test-retest reliability were achieved. The resulting SCI Peer Support Evaluation Tool consists of 20 single-item questions to assess 20 outcomes of SCI peer support. Conclusion: Through a systematic process, the SCI Peer Support Evaluation Tool is now ready to be implemented to assess outcomes of SCI peer support programs delivered by community-based SCI organizations.

PURPOSE:To develop an in-depth understanding of spinal cord injury (SCI) researchers' barriers and facilitators to deciding to use 1) a partnered approach to research and, 2) systematically developed principles for guiding Integrated Knowledge Translation (IKT) in spinal cord injury research (IKT Guiding Principles). METHODS:Qualitative interview study with North American SCI researchers who were interested in using a partnered research approach. The research was conducted using an IKT approach, and interview data were analyzed using reflexive thematic analysis. RESULTS:Thirteen SCI researchers whose research focused on prevention, clinical, rehabilitation, and/or community SCI research were interviewed. Three themes were co-constructed with partners: 1) the principles are necessary but not sufficient for the implementation of a partnered approach to research; 2) relational capacity building is needed; and 3) institutional transformation is needed to value, resource, and support meaningful engagement. CONCLUSIONS:Supporting change that enables SCI researchers to adopt and implement the IKT Guiding Principles will require transformation at the individual (theme 1), relational (theme 2), and institutional levels (theme 3). Findings provide clear, practical, and tangible actions to promote change that can support meaningful engagement in the SCI Research System.

This study aimed to understand the experiences of compassion fatigue and compassion fatigue resilience among peer mentors within Canadian spinal cord injury (SCI) community service organizations. Eight experienced peer mentors completed two online daily diary reflections and participated in one semistructured interview. Using abductive thematic analysis, constructs within the compassion fatigue resilience model and self-compassion theory guided our interpretation of the peer mentors’ experiences. We found consequences associated with compassion fatigue and compassion fatigue resilience and describe the internal and external factors contributing to each. Peer mentors whose experiences aligned with compassion fatigue felt physically, psychologically, and emotionally exhausted. These feelings appeared to have a negative influence on the peer mentors’ perception of their effectiveness, affecting their ability to help their mentees or even leading them to avoid their mentees altogether. Factors such as shared lived experience, exposure to mentee suffering/stress, traumatic memories, lack of self-compassion, and other mentorship/life demands contributed to peer mentors’ compassion fatigue. Conversely, factors such as self-care, self-compassion, detachment from mentee suffering/stress, satisfaction from mentoring, and social support promoted resilience to compassion fatigue. Compassion fatigue (resilience) was experienced by peer mentors as being a complex and multifaceted process including both internal and external factors. These findings highlight warning signs of compassion fatigue among peer mentors and identify the factors—and their interrelationships—that could build resilience to combat this fatigue. Organizations can use the information to tailor self-compassion programs for SCI peer mentorship.

STUDY DESIGN:Systematic review and meta-analysis. OBJECTIVES:Many individuals with spinal cord injury (SCI) experience autonomic dysfunction, including profound impairments to bowel and cardiovascular function. Neurogenic bowel dysfunction (NBD) is emerging as a potential determinant of quality of life (QoL) after SCI. For individuals with high-level lesions ( > T6), bowel care-related autonomic dysreflexia (B-AD; profound episodic hypertension) further complicates bowel care. We aimed to evaluate the extent of bowel dysfunction after SCI, and the impact of bowel dysfunction on QoL after SCI. METHODS:We searched five databases to identify research assessing the influence of NBD or B-AD on QoL after SCI. Metrics of bowel dysfunction (fecal incontinence [FI], constipation, time to complete, and B-AD) and QoL data were extracted and synthesised. Where possible, meta-analyses were performed. RESULTS:Our search identified 2042 titles, of which 39 met our inclusion criteria. Individuals with SCI identified problems with NBD (74.7%), FI (56.9%), and constipation (54.6%), and 49.3% of individuals with SCI > T6 experienced B-AD. Additionally, 40.3% of individuals experienced prolonged defecation ( > 30 min). Moderate/severe deterioration in QoL due to NBD was reported by 55.5% of individuals with SCI, with negative impacts on physical, emotional, and social health-related QoL associated with inflexibility of bowel routines, fear of accidents, and loss of independence. CONCLUSION:Bowel dysfunction and bowel care challenges are prevalent and disabling for individuals with SCI, with a profoundly negative impact on QoL. Improving bowel management is a key target to improve QoL for those living with SCI.

Introduction: During the COVID-19 pandemic, there was an urgent need for information on dealing with it among people with spinal cord injuries (SCI). Organizations provided resources, but many of them were generic. In some cases, the information was provided by dubious sources, contradictory, or not assessed for usability with individuals with SCI. This study reviewed COVID-19 web-based resources for individuals with SCI and evaluated their quality. Methods: A scoping review for COVID-19-related web-based resources for individuals with SCI was performed by first identifying SCI-relevant organizations and, subsequently, targeted website searching using a systematic search strategy in May 2021. The included resources were categorized based on their content and format (e.g., video, infographic, text). The resources were evaluated using tools that had been previously validated. Results: Our search identified 71 SCI organizations and 10,538 potential resources. Based on inclusion and exclusion criteria, 112 resources were included and categorized based on their content into ten main domains: prevention, caregivers, exercise, mental health, stories, telehealth, specific organs/systems, report of evidence, SCI network COVID-19 response and COVID-19 communication rights toolkit. The average score for the quality of the text, infographic, and video resources are 9.72/28 (Range:3-24), 37.75/44 (Range:35-41), and 59.14/80 (Range: 49-75), respectively. Conclusion: Website resources mainly focused on preventing COVID-19. Only five of them addressed telehealth during COVID-19 for individuals with SCI. The results of this study will inform the development of SCI-oriented toolkits for future pandemics.

The COVID-19 pandemic severely impacted vulnerable populations, such as individuals with spinal cord injury (SCI). Concerns within this group have escalated regarding access to essential services, including caregiver support, equipment maintenance, and medical care during the pandemic. In response, multiple COVID-19 online resources tailored for individuals with SCI were developed and provided. This study aimed to investigate the perspectives of individuals with SCI (n=12) on available COVID-19 online resources and to examine the perceived usability, clarity, and applicability of the resources. In this qualitative description study, we used an online survey and semi-structured interviews to collect data. Survey results indicated that 70% of participants found the resources useful, 65% found them easy to navigate, and 60% were likely to use the information provided, with specific feedback revealing generally positive responses for prevention infographics and text-based mental health resources, mixed feedback for mental health and physical activity videos, and varied responses for caregiver resources. Based on the data from qualitative interviews, three main themes emerged, namely “Quality of information”, “Presentation” and “Delivery of Resources”. Findings highlight the need for more specific, realistic, and actionable information tailored to the SCI community, emphasizing the importance of detailed, visually appealing, and regularly updated resources to effectively support individuals with SCI during health crises.

BACKGROUND:Individuals with spinal cord injury (SCI) are dissatisfied with their bowel care, but 71% have not changed their care for at least 5 years. Recently, individuals with SCI expressed a need for knowledge about bowel care options. Healthcare providers (HCP) play a crucial role in supporting bowel care changes OBJECTIVE:We aimed to understand the barriers and facilitators HCP face when discussing changes in bowel care with individuals with SCI. METHODS:Semi-structured interviews were conducted with HCP in partnership with Spinal Cord Injury British Columbia and key community stakeholders. Barriers and facilitators were extracted, deductively coded using the Theoretical Domains Framework, then inductively analysed for themes. RESULTS:Themes highlighted that effective bowel care requires diverse knowledge from a multidisciplinary team. Lack of time to prioritise bowel care and limited healthcare resources were barriers to improving care, which may be augmented through regular bowel care review of both medical and person-centered priorities. Facilitators were accessible and tailored knowledge sharing of care options, complemented by peer support. CONCLUSION:This study highlights the need for targeted interventions that reduce barriers and enhance facilitators to changing care routines, supporting individuals with SCI to change bowel care when needed, and improving quality of life.

PURPOSE:This study aimed to: (1) develop a coding manual to characterize topics discussed and conversation techniques used during peer mentorship conversations between people with spinal cord injury (SCI); (2) assess the reliability of the manual; and (3) apply the manual to characterize conversations.MATERIALS/METHODS:The study was conducted in partnership with three Canadian provincial SCI organizations. Twenty-five phone conversations between SCI peer mentors and mentees were audio-recorded and transcribed verbatim. Ten transcripts were inductively analyzed to develop a coding manual identifying topics and techniques used during the conversations. Inductive technique codes were combined and deductively linked to motivational interviewing and behaviour change techniques. Two coders independently applied the coding manual to all transcripts. Code frequencies were calculated.RESULTS:The coding manual included 14 topics and 31 techniques. The most frequently coded topics were personal information, recreational programs, and chronic health services for mentors and mentees. The most frequently coded techniques were giving personal information, social smoothers, and closed question for mentors; and giving personal information, social smoothers, and sharing perspective for mentees.CONCLUSION:This research provides insights into topics and techniques used during real-world peer mentorship conversations. Findings may be valuable for understanding and improving SCI peer mentorship programs.Implications for RehabilitationSCI peer mentorship conversations address a wide range of rehabilitation topics ranging from acute care to living in the community.Identification of the topics discussed, and techniques used in SCI peer mentorship conversations can help to inform formalized efforts to train and educate acute and community-based rehabilitation professionals.Identifying commonly discussed topics in SCI peer mentorship conversation may help to ensure that peer mentors are equipped with the necessary knowledge and resources, or the development of those resources be prioritized.Developing a method to characterize the topics discussed and techniques used during SCI peer mentorship conversations may aid in designing methods to evaluate how rehabilitation professionals provide support to people with SCI.