The spinal cord injury (SCI) peer support evaluation tool: the development of a tool to assess outcomes of peer support programs within SCI community-based organizations.

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.

Bowel burdens: a systematic review and meta-analysis examining the relationships between bowel dysfunction and quality of life after spinal cord injury.

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.

Transforming research systems for meaningful engagement: a reflexive thematic analysis of spinal cord injury researchers' barriers and facilitators to using the integrated knowledge translation guiding principles.

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.

Providing researchers with clear, procedural information and strategies to use each of the Integrated Knowledge Translation Guiding Principles in practice can support the implementation of the principles and partnered research in rehabilitation-based research.Fostering and evaluating resources and initiatives that help researchers network, build connections, and receive mentorship could help spinal cord injury researchers partner more effectively.Academic, research, and funding systems must ensure their practices, structures, culture, and processes enable, value, resource, support, and/or incentivize partnered research to ensure the research being conducted is relevant and useful in addressing the needs and priorities of research users.

Assessing the reach, effectiveness, adoption, implementation, and maintenance of the ProACTIVE SCI physical activity counseling intervention among physiotherapists and SCI peer coaches during the transition from rehabilitation to community.

Introduction: Physical Activity (PA) levels for individuals with spinal cord injury (SCI) peak during rehabilitation and sharply decline post-discharge. The ProACTIVE SCI intervention has previously demonstrated very large-sized effects on PA; however, it has not been adapted for use at this critically understudied timepoint. The objective is to evaluate the reach, effectiveness, adoption, implementation, and maintenance of the ProACTIVE SCI intervention delivered by physiotherapists and SCI peer coaches during the transition from rehabilitation to community. Methods: A single-group, within-subjects, repeated measures design was employed. The implementation intervention consisted of PA counseling training, champion support, prompts and cues, and follow-up training/community of practice sessions. Physiotherapists conducted counseling sessions in hospital, then referred patients to SCI peer coaches to continue counseling for 1-year post-discharge in the community. The RE-AIM Framework was used to guide intervention evaluation. Results: Reach: 82.3% of patients at the rehabilitation hospital were reached by the intervention. Effectiveness: Interventionists (physiotherapists and SCI peer coaches) perceived that PA counseling was beneficial for patients. Adoption: 100% of eligible interventionists attended at least one training session. Implementation: Interventionists demonstrated high fidelity to the intervention. Intervention strategy highlights included a feasible physiotherapist to SCI peer coach referral process, flexibility in timepoint for intervening, and time efficiency. Maintenance: Ongoing training, PA counseling tracking forms, and the ability to refer to SCI peer coaches at discharge are core components needed to sustain this intervention. Discussion: The ProACTIVE SCI intervention was successfully adapted for use by physiotherapists and SCI peer coaches during the transition from rehabilitation to community. Findings are important for informing intervention sustainability and scale-up.

IKT Guiding Principles: demonstration of diffusion and dissemination in partnership.

INTRODUCTION: Integrated knowledge translation (IKT) is a partnered approach to research that aims to ensure research findings are applied in practice and policy. IKT can be used during diffusion and dissemination of research findings. However, there is a lack of understanding how an IKT approach can support the diffusion and dissemination of research findings. In this study, we documented and described the processes and outcomes of an IKT approach to diffusing and disseminating the findings of consensus recommendations for conducting spinal cord injury research. METHODS: Communication of the IKT Guiding Principles in two phases: a diffusion phase during the first 102 days from the manuscript's publication, followed by a 1147 day active dissemination phase. A record of all inputs was kept and all activities were tracked by monitoring partnership communication, a partnership tracking survey, a project curriculum vitae, and team emails. Awareness outcomes were tracked through Google Analytics and a citation-forward search. Awareness includes the website accesses, the number of downloads, and the number of citations in the 29 month period following publication. RESULTS: In the diffusion period, the recommendations were viewed 60 times from 4 different countries, and 4 new downloads. In the dissemination period, the recommendations were viewed 1109 times from 39 different countries, 386 new downloads, and 54 citations. Overall, during dissemination there was a 17.5% increase in new visitors to the website a month and a 95.5% increase in downloads compared to diffusion. CONCLUSION: This project provides an overview of an IKT approach to diffusion and dissemination. Overall, IKT may be helpful for increasing awareness of research findings faster; however, more research is needed to understand best practices and the the impact of an IKT approach on the diffusion and dissemination versus a non-partnered approach.

Often, research findings do not get to the people, groups, and/or institutions who could benefit from the findings. Two ways to help move research into practice more efficiently are to: (1) work in partnership with people who may benefit most from the research findings, and (2) share and communicate the findings of research beyond scientists. However, little is known about how to work in partnership while sharing the results of a research study. Therefore, this project demonstrates how a research partnership can work while promoting the results of their research project. Overall, working in partnership while sharing research findings may further help to ensure the research results are shared with those who could benefit from those findings.

Supporting meaningful research partnerships: an interview study applying behavior change theory to develop relevant recommendations for researchers.

Research partnerships, while promising for ensuring translation of relevant and useable findings, are challenging and need support. This study aimed to apply behavior change theory to understand and support researchers' adoption of a research partnership approach and the Integrated Knowledge Translation (IKT) Guiding Principles for conducting and disseminating spinal cord injury (SCI) research in partnership. Using an IKT approach, SCI researchers across Canada and the USA completed a survey (n = 22) and were interviewed (n = 13) to discuss barriers and facilitators to deciding to partner and follow the IKT Guiding Principles. The Behaviour Change Wheel, Theoretical Domains Framework (TDF), and Mode of Delivery Ontology were used to develop the survey, interview questions, and guided analyses of interview data. COM-B and TDF factors were examined using descriptive statistics and abductive analyses of barriers and facilitators of decisions to partner and/or use the IKT Guiding Principles. TDF domains from the interview transcripts were then used to identify intervention, content, and implementation options. 142 factors (79 barriers, 63 facilitators) related to deciding to partner, and 292 factors (187 barriers, 105 facilitators) related to deciding to follow the IKT Guiding Principles were identified. Barriers to partnering or use the IKT Guiding Principles were primarily related to capability and opportunity and relevant intervention options were recommended. Interventions must support researchers in understanding how to partner and use the IKT Guiding Principles while navigating a research system, which is not always supportive of the necessary time and costs required for meaningful research partnerships.

Research partnerships, which expand beyond researchers solely working with other researchers, are said to be promising for helping to move research into practice. However, there is a lack in understanding of how to support meaningful research partnerships with those who are not part of academia. This study interviewed spinal cord injury researchers to understand what helps and prevents them from deciding to partner when conducting research projects. Results suggest that researchers do not lack motivation to partner; however, their ability and opportunity to do so is lacking. Overall, support is needed to help researchers understand how to work in partnership within the research system.

Couples' experiences with sexuality after spinal cord injury.

PURPOSE: To explore sexuality after spinal cord injury (SCI) from the perspectives of individuals with SCI and their romantic partners. METHODS: A sample of 8 Canadian adults with SCI (6 men, 2 women) and their partners participated in this study (N = 16). Semi-structured dyadic and individual interviews were conducted, discussions surrounding sexuality and intimacy were extracted, and a qualitative description of the interview data was performed using thematic analysis. RESULTS: Three major themes were identified: the changing definition of sex; emotions; and practical support. Couples' conversations around the changing definition of sex after SCI addressed the taboo topic of sexuality and the importance of communication between couples, peers, and healthcare providers. Emotions included fears of losing intimacy, embarrassment in managing bladder and bowel interference, and acceptance in balancing being a romantic partner and a caregiver. Finally, couples reported challenges accessing practical support including medical interventions and sexual health nurses, but saw value in peer mentorship programs. CONCLUSION: Couples explored a changing definition of sex following SCI that was complicated by the taboo nature of discussing sexuality, experienced a range of emotions throughout the recovery process, and had difficulties navigating the healthcare system for appropriate support.IMPLICATIONS FOR REHABILITATIONHealthcare professionals should promote discussion and provide support for sexuality following SCI, but during initial rehabilitation may be too early.Healthcare providers should prepare people with SCI and their partners for the inevitable trial-and-error process involved in sexual rehabilitation.Rehabilitation professionals could direct couples to SCI peer mentorship programs to help normalize the experiences and emotions of sexual rehabilitation.

Investigating the peer Mentor-Mentee relationship: characterizing peer mentorship conversations between people with spinal cord injury.

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.

Exploring smoking cessation experiences among persons with spinal cord injury: Informing theory-based recommendations for interventions.

STUDY DESIGN: Qualitative study. OBJECTIVE: Use an integrated knowledge translation (IKT) and theory-based approach, to (1) explore factors influencing smoking cessation behaviour among people with SCI, and (2) explore the preferred intervention and implementation options for smoking cessation interventions for persons with SCI. SETTING: Community. METHODS: Aligned with an IKT approach, an SCI organization was meaningfully engaged throughout the research process. Semi-structured interviews were conducted with people with SCI who have quit or tried to quit smoking. Barriers and facilitators to smoking cessation were extracted and deductively coded using the Theoretical Domains Framework (TDF) and inductively analysed. To identify intervention options, a behavioural analysis was conducted using the Behaviour Change Wheel. To identify implementation options, modes of delivery and intervention messengers were extracted. Modes of delivery were deductively coded, and themes relating to intervention messengers were constructed. RESULTS: Among the 12 participants (7 males; 6 with tetraplegia), seven had quit and five had relapsed. Across the 12 interviews, 130 barriers and 218 facilitators were coded to the TDF. The prominent TDF domains were beliefs about consequences, social influences, environmental context and resources, and behavioural regulation, and served as themes in the inductive analysis. Multiple modes of delivery and intervention messengers were considered important for the delivery of smoking cessation interventions. CONCLUSION: This study is the first to use IKT and theory-based approaches to explore factors influencing smoking cessation among persons with SCI. Findings from this study resulted in the co-development of practical recommendations for future SCI-specific smoking cessation interventions.

Barriers and facilitators to changing bowel care practices after spinal cord injury: a Theoretical Domains Framework approach.

BACKGROUND: Improvement to autonomic processes such as bladder, bowel and sexual function are prioritised by individuals with spinal cord injury (SCI). Bowel care is associated with high levels of dissatisfaction and decreased quality of life. Despite dissatisfaction, 71% of individuals have not changed their bowel care routine for at least 5 years, highlighting a disconnect between dissatisfaction with bowel care and changing routines to optimise bowel care. OBJECTIVE: Using an integrated knowledge translation approach, we aimed to explore the barriers and facilitators to making changes to bowel care in individuals with SCI. METHODS: Our approach was guided by the Behaviour Change Wheel and used the Theoretical Domains Framework (TDF). Semi-structured interviews were conducted with individuals with SCI (n = 13, mean age 48.6 ± 13.1 years) and transcribed verbatim (duration 31.9 ± 7.1 min). Barriers and facilitators were extracted, deductively coded using TDF domains and inductively analysed for themes within domains. RESULTS: Changing bowel care after SCI was heavily influenced by four TDF domains: environmental context and resources (workplace flexibility, opportunity or circumstance, and access to resources); beliefs about consequences; social influences (perceived support and peer mentorship); and knowledge (knowledge of physiological processes and bowel care options). All intervention functions and policy categories were considered viable intervention options, with human (61%) and digital (33%) platforms preferred. CONCLUSIONS: Modifying bowel care is a multi-factorial behaviour. These findings will support the systematic development and implementation of future interventions to both enable individuals with SCI to change their bowel care and to facilitate the optimisation of bowel care approaches.

Investigating the influence of interaction modality on the communication patterns of spinal cord injury peer mentors.

OBJECTIVES: To examine how the quality of spinal cord injury peer mentorship relationships and mentor-mentee behaviors are impacted by interaction modality. METHODS: Using a within-subjects, repeated measures, experimental design, peer mentors (n = 8) completed two mentoring sessions with a standardized mentee in a telephone and a video chat condition. Measures of therapeutic alliance and autonomy supportiveness were administered following each session. Mentors' leadership behaviors, motivational interviewing skills, and behavior change techniques were compared across conditions. Mentors' and mentees' use of motivational interviewing skills and behavior change techniques were further analyzed using state space grids. RESULTS: Mentors' therapeutic alliance, autonomy supportiveness, use of leadership behaviors, motivational interviewing skills, and behavior change techniques did not significantly differ across the two conditions (ps > 0.123; Cohen's d range = 0.218-0.619). State space grids analyses revealed that the dynamic structure of mentoring conversations was similar when interactions occurred through the telephone versus video chat. CONCLUSIONS: Mentors were effective at forming positive, autonomy supportive relationships with mentees in telephone and video chat interaction conditions. Mentors also used leadership/counselling behaviors to a similar extent when interacting through these two modalities. PRACTICE IMPLICATIONS: Organizations that provide peer mentorship can have confidence in using both telephone and video chat modalitites.

Identifying the outcomes of participating in peer mentorship for adults living with spinal cord injury: a qualitative meta-synthesis.

OBJECTIVE: Peer mentorship is a flagship program utilized by Canadian community-based spinal cord injury (SCI) organizations. Through connecting trained SCI peer mentors with fellow adults with SCI, these programs help adults adapt and thrive following their injury. The objective of this meta-synthesis was to work with SCI community organizations and to identify outcomes of participating in community- or rehabilitation-based peer mentorship programs using an integrated knowledge translation approach. DESIGN: A meta-synthesis of 21 qualitative peer-reviewed studies and 66 community documents was conducted. MAIN OUTCOME MEASURES: A total of 87 outcomes of peer mentorship were identified. RESULTS: The outcomes of peer mentorship were grouped according to six higher-order themes: 1) Independence: enhanced self-sufficiency; 2) Personal growth: positive psychological changes; 3) Activities and participation: greater participation in activities and events; 4) Adaptation: adapting to life with disability; 5) Knowledge: obtaining new information, resources, and opportunities; and 6) Connection: developing and maintaining social relationship. CONCLUSION: The positive nature of the identified outcomes suggests that participating in peer mentorship can promote improved health and quality of life for adults with SCI. Furthermore, the integrated knowledge translation approach helped identify outcomes that were previously not examined within SCI peer mentorship research, thus providing important insight for future research.

Implementation of the spinal cord injury exercise guidelines in the hospital and community settings: Protocol for a type II hybrid trial.

STUDY DESIGN: Type II hybrid effectiveness-implementation trial protocol. OBJECTIVES: To (1) evaluate the implementation of coordinated physical activity (PA) coaching delivered by physiotherapists and spinal cord injury (SCI) peers during the transition from in-hospital care to living in a community (implementation objective) and (2) assess the effect of coaching on PA behaviour and psychosocial predictors among people with SCI (effectiveness objective). SETTING: Rehabilitation hospital and home/community settings in British Columbia, Canada. METHODS: Implementation objective: PA coaches (physiotherapists and SCI peers) receive an implementation intervention including training, monitoring, feedback, and champion support. A Theoretical Domains Framework-based questionnaire is collected at baseline, post-training, 2, and 6 months follow-up and semi-structured interviews conducted at 6 months. Effectiveness objective: Using a quasi-experimental design, 55 adults with SCI are allocated to intervention (PA coaching, n = 30) or control (usual care, n = 25) groups. Participants in the intervention group are referred by physiotherapists to receive 11 SCI peer-delivered PA coaching sessions in the community. Control participants received usual care. Questionnaires assessing PA behaviour and psychosocial predictors are administered at baseline, 2-months, 6-months, and 1-year. Semi-structured interviews are conducted to assess intervention satisfaction at 6 months. Analyses include one-way (implementation objective) and two-way (effectiveness objective) repeated measures ANCOVAs for questionnaire-reported outcomes and thematic content analysis for interview data. Data are summarised using the reach effectiveness adoption implementation maintenance (RE-AIM) framework. ETHICS AND DISSEMINATION: The University of British Columbia Clinical Research Ethics Board approved the protocol (#H19-02694), clinicaltrials.gov registration NCT04493606. Documentation of the adoption process will inform implementation in future sites.

Participation of people living with disabilities in physical activity: a global perspective.

Approximately 1·5 billion people worldwide live with a physical, mental, sensory, or intellectual disability, about 80% of which are in low-income and middle-income countries. This Series paper provides a global overview of the prevalence, benefits, and promotion policies for physical activity for people living with disabilities (PLWD). PLWD are 16-62% less likely to meet physical activity guidelines and are at higher risk of serious health problems related to inactivity than people without disabilities. Meta-analyses have shown that physical activity has beneficial effects on cardiovascular fitness (average standardised mean difference [SMD] 0·69 [95% CI 0·31-1·01]), musculoskeletal fitness (0·59 [0·31-0·87]), cardiometabolic risk factors (0·39 [0·04-0·75]), and brain and mental health outcomes (0·47 [0·21-0·73]). These meta-analyses also show that health benefits can be achieved even with less than 150 min of physical activity per week, and suggest that some physical activity is better than none. Meta-analyses of interventions to increase physical activity for PLWD have reported effect sizes ranging from SMD 0·29 (95% CI 0·17-0·41, k=10) to 1·00 (0·46-1·53, k=10). There is increasing awareness among policy makers of the needs of PLWD for full participation in physical activity. Physical activity action plans worldwide must be adequately resourced, monitored, and enforced to truly advance the fundamental rights of PLWD to fully participate in physical activity.

Enhancing participation while aging with spinal cord injury: applying behaviour change frameworks to develop intervention recommendations.

STUDY DESIGN: Knowledge translation study. OBJECTIVES: Use the Theoretical Domains Framework (TDF) and Behaviour Change Wheel (BCW) to (1) identify barriers and facilitators to participation in daily activities and social roles among people aging with spinal cord injury (SCI); and, (2) systematically co-develop participation-focused intervention recommendations with SCI community organizations that can support people aging with SCI. SETTING: Canadian SCI community. METHODS: Semi-structured interviews were conducted with 22 people (minimum 45 years of age; minimum 10 years post injury). Participants were asked about their experiences with participating in daily activities and social roles while aging and preferences for what participation-focused interventions should entail. Transcripts were analyzed to address three stages of behaviour change intervention design: (1) identify barriers and facilitators; (2) identify intervention functions and policy categories; (3) identify implementation options. Findings were synthesized into intervention recommendations and assessed for feasibility. RESULTS: Participation in daily activities and social roles was heavily influenced by three TDF domains: environmental context and resources, skills, and social influences. Six intervention functions and all policy categories within the BCW were considered viable intervention options. Multiple messengers and modes of delivery were identified as important. The synthesized recommendations included educating SCI organization membership, partnering with other disability organizations, and advocating to the provincial government. CONCLUSIONS: Findings suggest that multiple intervention formats delivered through a variety of implementation options are needed to enhance participation in daily activities and social roles while aging with SCI. Future efforts should focus on translating the recommendations into real-world behaviour change interventions.

Integrated Knowledge Translation Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnership.

OBJECTIVE: To address a gap between spinal cord injury (SCI) research and practice by rigorously and systematically co-developing integrated knowledge translation (IKT) guiding principles for conducting and disseminating SCI research in partnership with research users. DESIGN: The process was guided by the internationally accepted The Appraisal of Guidelines for REsearch & Evaluation (AGREE) II Instrument for evaluating the development of clinical practice guidelines. SETTING: North American SCI research system (ie, SCI researchers, research users, funders). PARTICIPANTS: The multidisciplinary expert panel (n=17) and end users (n=35) included individuals from a North American partnership of SCI researchers, research users, and funders who have expertise in research partnerships. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Clarity, usefulness, and appropriateness of the principles. RESULTS: Data regarding 125 principles of partnered research were systematically collected from 4 sources (review of reviews, scoping review, interviews, Delphi consensus exercise). A multidisciplinary expert panel held a 2-day meeting to establish consensus, select guiding principles, and draft the guidance. The panel reached 100% consensus on the principles and guidance document. The final document includes a preamble, 8 guiding principles, and a glossary. Survey data showed that the principles and guidance document were perceived by potential end users as clear, useful, and appropriate. CONCLUSIONS: The IKT Guiding Principles represent the first rigorously co-developed, consensus-based guidance to support meaningful SCI research partnerships. The principles are a foundational tool with the potential to improve the relevance and impact of SCI research, mitigate tokenism, and advance the science of IKT.

Exploring meanings of successful aging among people with long-term spinal cord injury.

Purpose/Objective: The purpose of the present study was to develop an understanding of successful aging (SA) meanings and influences that is informed by the lived experiences of people aging with long-term spinal cord injury (SCI). Method: This study was conducted in partnership with three Canadian provincial SCI organizations using an integrated knowledge translation (IKT) approach. To ensure findings were meaningful and practical to the three SCI organizations, the study was grounded in pragmatic philosophical assumptions. Semistructured interviews were conducted with 22 people aging with long-term SCI (minimum 45 years of age; minimum 10-years postinjury). All interviews were audio-recorded, transcribed verbatim, and subjected to a reflexive thematic analysis. Results: SA was understood as an interconnected and multifaceted concept that prioritizes health, participation, and independence. Participants discussed how SA was influenced negatively by personal (aging-related complications, intrapersonal emotional distress) and environmental (lack of available resources, differing community priorities) barriers. Participants reported that SA was positively influenced when individuals acted as self-advocates, were prepared and aware of aging-related changes, and maintained strong relationships with others. Conclusions/Implications: This study presents an initial, SCI-specific understanding of meanings and influences on SA. Although there were similarities between our findings and previous SA models, pertinent differences were also identified. Findings highlight that supporting quality participation experiences for people aging with long-term SCI may be an important direction SCI organizations can take to support their membership. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation.

BACKGROUND: Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called SCI & U. OBJECTIVE: This study aims to evaluate the feasibility and potential impact of the SCI & U program in the context of a mixed methods pilot study. METHODS: The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative. RESULTS: Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. CONCLUSIONS: Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial.

Translating the international scientific spinal cord injury exercise guidelines into community and clinical practice guidelines: a Canadian evidence-informed resource.

STUDY DESIGN: Knowledge translation (KT) study. OBJECTIVES: To demonstrate how to use systematic, community-engaged methods to (1) translate the international scientific spinal cord injury (SCI) exercise guidelines into community and clinical practice guidelines, and (2) develop supporting resources. SETTING: Canada. METHODS: An expert panel of SCI researchers and stakeholders translated the guidelines and developed a supporting resource, using a KT process guided by an adapted version of the Appraisal of Guidelines, Research and Evaluation (AGREE) II Instrument. Pilot tests with end-users were conducted throughout. RESULTS: The panel recommended (1) the two scientific exercise guidelines be combined and presented in a single message titled "The Canadian SCI physical activity guidelines"; (2) development of an online supporting resource, with educational and motivational information presented in "layers" to address the needs and preferences of diverse end-users. The top layer presents and explains the Canadian SCI physical activity guidelines. The deeper layers include information on benefits, overcoming barriers, activity examples, safety tips, and links to existing resources. Interviews with adults with SCI (n = 8) and survey-data from end-users (n = 90) showed that the guidelines and supporting resource were perceived as clear, useful, and appropriate. CONCLUSION: Using community-engaged methods, the two scientific SCI exercise guidelines were combined into one single physical activity guideline message. This KT process provides a template for groups in other countries to translate the scientific SCI exercise guidelines to their local settings using a similar systematic, community-engaged approach. SPONSORSHIP: Rick Hansen Institute; Social Sciences and Humanities Research Council of Canada.