Understanding the experiences, needs, and strengths of people with incomplete spinal cord injury who can ambulate.

PURPOSE: To identify the experiences, needs, and strengths of people with incomplete spinal cord injury who can ambulate and to explore and discuss potential supports, services, and programs that would best assist them in the community. MATERIAL AND METHODS: In this qualitative descriptive study, interviews were the primary means of data collection. These were supplemented with descriptive standardized measures of function and life satisfaction. Qualitative data were analyzed thematically. RESULTS: Twenty-four participants were interviewed, their average age was 55 years and 46% were female. We identified three themes: 'I really couldn't go there', described the physical and social barriers experienced by participants, 'It'd be really nice to let the public know there are people out there like me' expressed the desire for greater social understanding of incomplete spinal cord injury, and 'I just don't quit', displayed the perseverance that participants demonstrated following their injury. CONCLUSION: Findings indicate service providers to improve the inclusion of ambulatory individuals with incomplete spinal cord injury in their programs. Suggestions include designing programs (community, healthcare, return to work, peer support), environments using the principles of universal design for people with incomplete spinal cord injury who ambulate, and increasing consideration of their perspectives.Implication for rehabilitation:People with incomplete spinal cord injury who can ambulate live with invisible impairments, which are often not acknowledged by family, friends, health professionals, and people with complete spinal cord injuryThey may feel excluded from activities (organized by spinal cord injury associations) that were originally designed for people with complete spinal cord injuryGreater awareness among health professionals, friends, family, and people with complete spinal cord injury of the needs of people with incomplete spinal cord injury who can ambulate is needed to increase their inclusion.

Principles to guide spinal cord injury research partnerships: a Delphi consensus study.

PURPOSE: To establish consensus regarding principles that should be used to guide spinal cord injury (SCI) research partnerships between researchers and research users. MATERIALS AND METHODS: A three-round Delphi consensus exercise was carried out with researchers and/or research users involved in one or more SCI research partnerships. Participants considered a list of 125 partnership principles. In rounds 1 and 2, participants rated their agreement that a principle should guide SCI research partnerships on an 11-point Likert scale. After each round, principles that received a mean score of ≥8.0 or 70% of participants rated the principle ≥8.0 were retained. In round 3, participants categorized principles as essential, desirable, irrelevant, or unsure. RESULTS: At least 20 individuals participated in each round. In round 1, 103 principles met consensus criteria and eight principles were added. In round 2, 93 principles met the criteria. In round 3, 29 principles were categorized as essential and eight as desirable. Recommended principles focused on the interpersonal, relational, and logistical aspects of partnerships. Principles that did not reach consensus related to social justice and actionable impact. CONCLUSIONS: Findings provide insight into 37 principles that could be used to combat tokenism and inform future guidance to meaningfully engage partners in SCI research.Implications for RehabilitationConsensus-based research partnership principles (i.e., norms or beliefs) were identified and could be prioritized to help support spinal cord injury (SCI) researchers and research users combat tokenism and meaningfully engage research users as partners in the co-creation of knowledge.The resulting list of recommended research partnership principles was used to inform the development of guidance to support quality partnerships between SCI researchers and research users within and outside the rehabilitation context (www.IKTprinciples.com).Guidance supporting meaningful research partnerships may accelerate the time between discovery and use of research in practice.

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.

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.