Participants' perspectives of "NeuroSask: Active and Connect"-a virtual chronic disease management program for individuals with a neurological condition.

Introduction: Neurological conditions account from more than half of Canadians requiring chronic care. Both physical activity and the development of a self-management skillset are critical components supporting individuals with chronic health conditions. "NeuroSask: Active and Connected" is a virtual chronic disease management program offering twice weekly neuro-physiotherapist directed "active" exercise sessions, followed by weekly knowledge-exchange "connect" sessions with invited guest experts. NeuroSask was launched April 2020 in response to the restricted services and supports for people with neurological conditions. The program aimed to provide seated physical activity, social interaction, and access to expertise in neurological conditions and neurorehabilitation. A program evaluation of NeuroSask was conducted to gain participants' perspectives. Methods: All participants registered for the NeuroSask program were invited to complete optional online surveys (SurveyMonkey) circulated by email at 3 occasions post-program launch: 10 weeks, 1 year, and 2 years. Participants could complete any one or all of the surveys, at their discretion. The number of potential respondents changed dependent on the total number of participants registered for NeuroSask at the time the survey was circulated. Questions were co-designed by multi-stakeholder team members. Descriptive statistics were used for closed-ended questions and a reflexive thematic analysis was completed with coding conducted in NVivo 12 Plus for open-ended text. Results: Response rates (participants/registrants) were as follows: 10-week survey 260/793, one year survey 326/1224, and 2-year survey 434/1989. 90% of participants reported being in either the age categories of 40-59 years or above 60 years. 75% of both survey respondents and program registrants were female. 70% of both survey respondents and program registrants reported a diagnosis of multiple sclerosis and 30% reported other neurological conditions. Survey respondents were from all ten Canadian provinces, with 45% reporting living outside of large cities. Respondents reported preferring online vs. in person format for this type of programming. Three main themes, and eight corresponding subthemes were identified highlighting the perceived impact and key components of the NeuroSask program: Theme 1 "together in a positive and encouraging environment" (subthemes 1a: connection, 1b: empowerment); Theme 2 "access to enthusiastic qualified leaders from home" (subthemes 2a: leader characteristics, 2b: accessibility, 2c: program logistics); Theme 3 "being able to enjoy everyday life" (subthemes 3a: symptom benefits and beyond, 3b: carry-over, 3c: keep going, please do not cancel). Conclusion: NeuroSask is an example of an accessible and meaningful virtual approach to providing ongoing support for some individuals with neurological conditions. It was perceived as beneficial for fostering community and connection in a positive environment with perceived benefits extending beyond symptom management to participant reported improvements in function, daily life, and disease experience.

Perspectives on medical assistance in dying amongst persons with traumatic spinal cord injury: a qualitative study.

STUDY DESIGN: Qualitative. OBJECTIVE: To explore the perspectives of persons living with chronic (>5 y) traumatic spinal cord injuries (tSCI) concerning medical assistance in dying (MAID). SETTING: Saskatchewan, Canada. METHODS: Qualitative exploratory using an interpretative description methodology. Individual semi-structured interviews were held with online video conferencing. Interviews were analyzed using codebook thematic analysis. RESULTS: Ten persons with a chronic (>5 y) tSCI participated (seven males, three females; age 20s-50s; spinal cord level C2-T10). Participants expressed support for persons living with SCI having access to MAID, specifically in the context of preserving autonomy and respecting equality when compared with able-bodied individuals. However, some were concerned about the implications of access to MAID solely based on the diagnosis of a SCI. Participants also emphasized the variability in the initial personal response to injury and expressed concern about MAID being immediately available after injury. They explained the significance and necessity of reflecting on the injury in what can be a lengthy process of adjustment and acceptance. Participants also discussed the importance of hope and highlighted the irreplaceable value of peer support in shaping hope throughout rehabilitation and the need for compassionate, comprehensive, and continuous care to facilitate reintegration and support independence. CONCLUSIONS: Access to MAID provides a greater range of choices for individuals with tSCI but could increase deaths occurring before optimal adaptation and adjustment. The involvement of inter-professional teams, mental health specialists and peers is important to frame hope and understand the potential of a fulfilling life with a tSCI.

Ipsilesional Motor Cortex Activation with High-force Unimanual Handgrip Contractions of the Less-affected Limb in Participants with Stroke.

Stroke is a leading cause of severe disability that often presents with unilateral motor impairment. Conventional rehabilitation approaches focus on motor practice of the affected limb and aim to suppress brain activity in the contralesional hemisphere. Conversely, exercise of the less-affected limb promotes contralesional brain activity which is typically viewed as contraindicated in stroke recovery due to the interhemispheric inhibitory influence onto the ipsilesional hemisphere. Yet, high-force unimanual handgrip contractions are known to increase ipsilateral brain activation in control participants, and it remains to be determined if high-force contractions with the less-affected limb would promote ipsilateral brain activation in participants with stroke (i.e., the ipsilesional hemisphere). Therefore, this study aimed to determine how parametric increases in handgrip force during repeated contractions with the less-affected limb impacts brain activity bilaterally in participants with stroke and in a cohort of neurologically intact controls. Participants performed repeated submaximal contractions at 25%, 50%, and 75% of their maximum voluntary contraction during separate functional magnetic resonance imaging brain scans. Brain activation during the tasks was quantified as the percent change from resting levels. In this study, higher force contractions were found to increase brain activation in the ipsilesional (stroke)/ipsilateral (controls) hemisphere in both groups (p = .002), but no between group differences were observed. These data suggest that high-force exercise with the less-affected limb may promote ipsilesional cortical plasticity to promote motor recovery of the affected-limb in participants with stroke.

Development of employment indicators to advance the quality of spinal cord injury rehabilitation care: SCI-High Project.

CONTEXT: Employment and Return to Work (RTW) rates following spinal cord injury/disease (SCI/D) are low due to individual and impairments characteristics, secondary health conditions, social and environmental barriers, prior work experience, workplace supports and resources, and physical or psychosocial work demands. To improve RTW, the SCI-High Project team developed a set of Employment structure, process, and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. METHODS: A pan-Canadian Working Group of diverse stakeholders: (1) defined the Employment construct; (2) conducted a systematic search of available outcomes measures; (3) constructed a Driver diagram summarizing factors associated with employment. Subsequent facilitated meetings allowed for the creation of structure and process indicators, and the selection of outcome indicators. RESULTS: The structure indicator is the proportion of SCI/D rehabilitation programs with an employment resource center. The process indicator is the proportion of SCI/D rehabilitation inpatients who receive an employment assessment during inpatient rehabilitation. The intermediary and final outcome measures are the Readiness for Return-to-Work Scale (RRTW) and Work Productivity and Activity Impairment (WPAI). Scale A of the RRTW for those who are unemployed and Scale B of RRTW and WPAI will be used for those who are employed. CONCLUSION: This framework of Employment indicators intends to support the RTW needs of persons with SCI/D by ensuring that rehabilitation professionals provide opportunities to explore RTW within the first 18 months after rehab admission. Increased employment rates have the potential to enhance the wellbeing, health, and longevity of individuals with SCI/D.

Development of community participation indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

Community participation following spinal cord injury/disease (SCI/D) can be challenging due to associated primary impairments and secondary health conditions as well as difficulties navigating both the built and social-emotional environment. To improve the quality of SCI/D rehabilitation care to optimize community participation, the SCI-High Project developed a set of structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission.A pan-Canadian Working Group of diverse stakeholders: (1) defined the community participation construct; (2) conducted a systematic review of available outcomes and their psychometric properties; (3) constructed a Driver diagram summarizing available evidence associated with community participation; and (4) prepared a process map. Facilitated meetings allowed selection and review of a set of structure, process and outcome indicators.The structure indicator is the proportion of SCI/D rehabilitation programs with availability of transition living setting/independent living unit. The process indicators are the proportion of SCI/D rehabilitation inpatients who experienced: (a) a therapeutic community outing prior to rehabilitation discharge; and, (b) those who received a pass to go home for the weekend. The intermediary and final outcome measures are the Moorong Self-Efficacy Scale and the Reintegration to Normal Living Index.The proposed indicators have the potential to inform whether inpatient rehabilitation for persons with SCI/D can improve self-efficacy and lead to high levels of community participation post-rehabilitation discharge.

Conception and development of Self-Management indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

CONTEXT: Although self-management is linked to reduced secondary health complications (SHCs) and enhanced overall quality of life post-spinal cord injury or disease (SCI/D), it is poorly integrated into the current rehabilitation process. Promoting self-management and assuring equity in care delivery is critical. Herein, we describe the selection of Self-Management structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. METHODS: Experts in self-management across Canada completed the following tasks: (1) defined the Self-Management construct; (2) conducted a systematic search of available outcomes and their psychometric properties; and (3) created a Driver diagram summarizing available evidence related to Self-Management. Facilitated meetings allowed development and selection following rapid-cycle evaluations of proposed structure, process and outcome indicators. RESULTS: The structure indicator is the proportion of staff with appropriate education and training in self-management principles. The process indicator is the proportion of SCI/D inpatients who have received a self-management assessment related to specific patient self-management goal(s) within 30 days of admission. The outcome indicator is the Skill and Technique Acquisition, and Self-Monitoring and Insight subscores of the modified Health Education Impact Questionnaire. CONCLUSION: The structure indicator will heighten awareness among administrators and policy makers regarding the need to provide staff with ongoing training related to promoting self-management skill acquisition. Successful implementation of the Self-Management process and outcome indicators will promote self-management education and skill acquisition as a rehabilitation priority, allow for personalization of skills related to the individual's self-management goal(s), and empower individuals with SCI/D to manage their health and daily activities while successfully integrating into the community.

Incidence and trends of limb amputation in first nations and general population in Saskatchewan, 2006-2019.

BACKGROUND: There is conflicting evidence whether limb amputation (LA) disproportionately affects indigenous populations. To better understand this disparity, we compared the LA incidence rate between First Nations persons registered under the Indian Act of Canada (RI) and the general population (GP) in Saskatchewan. METHODS: We used Saskatchewan's retrospective administrative data containing hospital discharge LA cases, demographic characteristics (age and sex), and residents population reported in the database stratified by RI and GP from 2006-2019. The LA cases for each stratified group were first disaggregated into three broad categories: overall LA (all reported LA), primary LA (first reported LA), and subsequent LA (revision or contralateral LA), with each category further split into the level of amputation defined as major amputation (through/above the ankle/wrist joint) and minor amputation (below the ankle/wrist joint). LA rates were calculated using LA cases as the numerator and resident population as the denominator. Joinpoint and negative binomial regressions were performed to explore the trends further. RESULTS: Overall, there were 1347 RI and 4520 GP LA cases reported in Saskatchewan from 2006-2019. Primary LA made up approximately 64.5% (869) of RI and 74.5% (3369) of GP cases, while subsequent LA constituted 35.5% (478) of RI and 25.5% (1151) of GP cases. The average age-adjusted LA rate was 153.9 ± 17.3 per 100,000 in the RI cohort and 31.1 ± 2.3 per 100,000 in the GP cohort. Overall and primary LA rates for the GP Group declined 0.7% and 1.0%, while subsequent LA increased 0.1%. An increased LA rate for all categories (overall 4.9%, primary 5.1%, and subsequent 4.6%) was identified in the RI group. Overall, minor and major LA increased by 6.2% and 3.3%, respectively, in the RI group compared to a 0.8% rise in minor LA and a 6.3% decline in major LA in the GP group. RI females and males were 1.98-1.66 times higher risk of LA than their GP counterparts likewise, RI aged 0-49 years and 50+ years were 2.04-5.33 times higher risk of LA than their GP cohort. Diabetes mellitus (DM) was the most prevalent amputation predisposing factor in both groups with 81.5% of RI and 54.1% of GP diagnosed with DM. Also, the highest proportion of LA was found in the lowest income quintile for both groups (68.7% for RI and 45.3% for GP). CONCLUSION: Saskatchewan's indigenous individuals, specifically First Nations persons registered under the Indian Act of Canada, experience LA at a higher rate than the general population. This disparity exists for all variables examined, including overall, primary, and subsequent LA rates, level of amputation, sex, and age. Amplification of the disparities will continue if the rates of change maintain their current trajectories. These results underscore the need for a better understanding of underlying causes to develop a targeted intervention in these groups.

Investigating proactive balance control in individuals with incomplete spinal cord injury while walking on a known slippery surface.

BACKGROUND: Up to 83 % of individuals with incomplete spinal cord injury (iSCI) experience ≥ 1 fall/year. Individuals with iSCI employ more cautious walking strategies than able-bodied (AB) individuals during normal walking. Whether individuals with iSCI can use proactive balance strategies to adapt to expected slip perturbations/reduce slip severity while walking has not been previously assessed. METHODS: 19 individuals with iSCI (AIS D; 14 males; 61 ± 18 years) and 17 AB individuals (13 males; 61 ± 18 years) completed 3 walking conditions: normal walking trials, an unexpected slip trial, and expected slip trials. Steel rollers induced a slip in the antero-posterior (AP) direction. Outcome variables included step length, center of mass velocity, foot-floor angle, AP margin of stability, and maximum post-slip velocity (PSV). RESULTS: The iSCI group used a greater magnitude of cautious strategies (i.e. walking slower with shorter, flatter steps) than AB individuals in all conditions. However, the lack of significant interaction effects indicate that the proactive adaptations compared to normal walking (i.e. walking slower with shorter, flatter steps, and a more anterior xCOM-position) were similar between the two groups (AB & iSCI). Both groups showed a similar rate of adaptation (after just 1 slip) and these feedforward changes were maintained throughout the remaining slip trials which was effective at reducing maximum PSV. CONCLUSIONS: Individuals with iSCI use proactive balance strategies to adapt to a known slippery surface in a similar manner to AB individuals both in terms of the proportion and timing of adaptation.

Reactive balance responses to an unexpected slip perturbation in individuals with incomplete spinal cord injury.

BACKGROUND: Frequent falls while walking among individuals with incomplete spinal cord injury may suggest impairments in reactive balance control; however, reactive balance control during walking has not been studied in this population. The objective was to compare reactive balance control with respect to changes in margin of stability, onset of arm and heel responses, and onset and magnitude of muscle activity following an unexpected slip perturbation in individuals with incomplete spinal cord injury and able-bodied individuals. METHODS: Kinematic and electromyography data were obtained during normal walking and one unexpected slip. Changes in margin of stability following a compensatory or aborted step, onset of arms and trail heel responses, and onset and magnitude of activation of the tibialis anterior, soleus and gluteus medius were calculated. Multivariate analyses compared responses between incomplete spinal cord injury and able-bodied groups. FINDINGS: Data from 16 participants with incomplete spinal cord injury (all American Spinal Injury Association Impairment Scale Grade D, 8 with tetraplegia) and 13 age-and-sex matched able-bodied individuals were included. Individuals with incomplete spinal cord injury demonstrated limited ability to increase margin of stability in the lateral direction during a compensatory or aborted step, and a smaller magnitude of soleus activity compared to able-bodied individuals. INTERPRETATION: There are limitations in reactive balance control of individuals with incomplete spinal cord injury, which may be a reason for the high frequency of falls in this population. Reactive balance assessment should be included as a component of routine balance assessment and fall avoidance strategies in this population.

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.

A Scoping Review of Self-Management Interventions Following Spinal Cord Injury.

Objective: To conduct a scoping review to identify what components of self-management are embedded in self-management interventions for spinal cord injury (SCI). Methods: In accordance with the approach and stages outlined by Arksey and O'Malley (2005), a comprehensive literature search was conducted using five databases. Study characteristics were extracted from included articles, and intervention descriptions were coded using Practical Reviews in Self-Management Support (PRISMS) (Pearce et al, 2016), Barlow et al (2002), and Lorig and Holman's (2003) taxonomy. Results: A total of 112 studies were included representing 102 unique self-management programs. The majority of the programs took an individual approach (52.0%) as opposed to a group (27.4%) or mixed approach (17.6%). While most of the programs covered general information, some provided specific symptom management. Peers were the most common tutor delivering the program material. The most common Barlow components included symptom management (n = 44; 43.1%), information about condition/treatment (n = 34; 33.3%), and coping (n = 33; 32.4%). The most common PRISMS components were information about condition and management (n = 85; 83.3%), training/rehearsal for psychological strategies (n = 52; 51.0%), and lifestyle advice and support (n = 52; 51.0%). The most common Lorig components were taking action (n = 62; 60.8%), resource utilization (n = 57; 55.9%), and self-tailoring (n = 55; 53.9%). Conclusion: Applying self-management concepts to complex conditions such as SCI is only in the earliest stages of development. Despite having studied the topic from a broad perspective, this review reflects an ongoing program of research that links to an initiative to continue refining and testing self-management interventions in SCI.

Walking Stability During Normal Walking and Its Association with Slip Intensity Among Individuals with Incomplete Spinal Cord Injury.

BACKGROUND: Ambulatory individuals with incomplete spinal cord injury (iSCI) experience frequent falls suggesting impairments in their balance control. Individuals with iSCI are more stable during normal walking as compared to able-bodied (AB) individuals; however, it is not known whether this increased stability helps prevent hazardous slips. OBJECTIVE: To compare walking stability during normal walking between iSCI and AB individuals, and to study the association between stability during normal walking and the intensity of an unexpected slip perturbation. DESIGN: Cross-sectional. SETTING: Biomechanics of Balance and Movement lab, University of Saskatchewan, Saskatoon. PARTICIPANTS: Twenty iSCI (15 men; age: M = 60.05, SD = 17.77 years) and 16 (12 men; age: M = 58.92, SD = 17.10 years) AB individuals. METHODS: Stability measures during unperturbed walking at a self-selected speed were collected from all the participants. Additionally, stability measures were also collected from 10 of the AB participants walking at a slower speed. An unexpected slip perturbation was recorded in all participants during a self-selected speed trial and peak-slip heel velocity post slip was recorded. MAIN OUTCOME MEASUREMENTS: Measures of stability: ankle co-contraction, required coefficient of friction, walking velocity, foot angle, anteroposterior margin of stability, percentage double support, step length, and step width were compared between iSCI, AB-self selected, and AB-slow walking groups. Associations between slip intensity, indicated by peak post-slip heel velocity, and stability measures were also examined through correlation analysis. RESULTS: Individuals with iSCI walked slower, took shorter steps, and spent a greater percentage of time in double support compared with AB individuals walking at a self-selected pace (P < .01). Slower walking velocity was correlated with slower post-slip velocity in participants with iSCI (P = .01) only. CONCLUSIONS: Individuals with iSCI walk with greater stability than AB individuals during unperturbed walking because of a lower self-selected speed, which appears to reduce the intensity of an unexpected slip perturbation. LEVEL OF EVIDENCE: III.

Provincial Differences in the Diagnosis and Care of Amyotrophic Lateral Sclerosis.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease resulting in muscle weakness, dysarthria and dysphagia, and ultimately respiratory failure leading to death. Half of the ALS patients survive less than 3 years, and 80% of the patients survive less than 5 years. Riluzole is the only approved medication in Canada with randomized controlled clinical trial evidence to slow the progression of ALS, albeit only to a modest degree. The Canadian Neuromuscular Disease Registry (CNDR) collects data on over 140 different neuromuscular diseases including ALS across ten academic institutions and 28 clinics including ten multidisciplinary ALS clinics. METHODS: In this study, CNDR registry data were analyzed to examine potential differences in ALS care among provinces in time to diagnosis, riluzole and feeding tube use. RESULTS: Significant differences were found among provinces, in time to diagnosis from symptom onset, in the use of riluzole and in feeding tube use. CONCLUSIONS: Future investigations should be undertaken to identify factors contributing to such differences, and to propose potential interventions to address the provincial differences reported.

Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study.

BACKGROUND: Rehospitalization rates resulting from secondary conditions in persons with spinal cord injuries (SCI) are high. Self-management programs for many chronic conditions have been associated with decreases in hospital readmissions. However, in the SCI community, evidence suggests that satisfaction with traditional self-management programs is low. Users with SCI have indicated preference for programs that are online (rather than in-person), that target SCI-specific concerns, and are led by peers with SCI. There is currently no program with all of these features, which addresses self-management of secondary conditions after SCI. OBJECTIVE: The aim of this study was to provide details of a participatory design (PD) process for an internet-mediated self-management program for users with SCI (called SCI & U) and illustrate how it has been used to define design constraints and solutions. METHODS: Users were involved in development as codesigners, codevelopers, and key informants. Codesigners and codevelopers were recruited from consumer advocacy groups and worked with a core development team. Key informants were recruited from geographically distributed advocacy groups to form a product advisory council that met regularly with the core team. During meetings, codesigners and informants walked through stages of work that typify PD processes such as exploration, discovery, and prototyping. This paper details the process by analyzing 10 meetings that took place between August 2015 and May 2016. Meetings were recorded, transcribed, and subjected to an inductive thematic analysis; resulting themes were organized according to their relationship to PD stages. RESULTS: A total of 16 individuals participated in meeting discussions, including 7 researchers and 9 persons with SCI from 4 Canadian provinces. Themes of trust, expertise, and community emerged in every group discussion. The exploration stage revealed interest in online self-management resources coupled with concerns about information credibility. In general, participants indicated that they felt more confident with information received from trusted, in-person sources (eg, peers or health care professionals) than information found online. The discovery stage saw participants propose and discuss concepts to filter credible information and highlight community expertise, namely (1) a community-curated resource database, (2) online information navigators, and (3) group chats with peers. Several tools and techniques were collectively prototyped in an effort to foster trust and community; these are illustrated in the Results section. CONCLUSIONS: A PD process engaging users as codesigners, codevelopers, and informants can be used to identify design concerns and prototype online solutions to promote self-management after SCI. Future work will assess the usability of the collectively designed tools among a broad population of Canadians with SCI and the tools' impact on self-efficacy and health.

Using the theoretical domains framework to guide the development of a self-management program for individuals with spinal cord injury: Results from a national stakeholder advisory group.

OBJECTIVE: To determine the implementation considerations for a targeted self-management program for individuals with spinal cord injury (SCI) from the perspective of a national stakeholder advisory group using the Theoretical Domains Framework (TDF) as a guide. DESIGN: Qualitative descriptive approach. SETTING: Two focus groups held at the 6th National Spinal Cord Injury Conference (October 2-4th, 2014) in Toronto, Ontario, Canada. PARTICIPANTS: A total of 25 stakeholders from across Canada participated in focus groups or "brainstorming sessions". The stakeholders included 5 clinicians, 14 researchers, 3 policy makers, and 3 individuals with SCI. INTERVENTIONS: Not applicable. OUTCOME MEASURES: Not applicable. RESULTS: All 14 theoretical domains were identified in the brainstorming sessions. No new themes or domains were identified. The need to consider the theoretical domains of Knowledge, Skills, Reinforcement, Intentions, Goals (e.g. the readiness of the individual with SCI), Environmental Context and Resources (e.g. considerations for governance and ownership of the program and a business model for sustainability), as well as Social Influences (e.g. issues of privacy and security in the context of on-line delivery) was identified. CONCLUSIONS: The current study provides complementary results to our previous series of studies on the implementation considerations for the development of a targeted self-management program for individuals with SCI by emphasizing the health care professional/health policy perspective. It is anticipated that such a program could not only reduce secondary complications and subsequent inappropriate health care use but it may also improve the quality of life for individuals with SCI and their caregivers.

Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.

Empowerment is believed to be an essential element in self-management of disease and the promotion of self-efficacy, and can be defined as the ability of individuals to increase control over aspects of their lives. In contrast, powerlessness in individuals with chronic illness can occur when they perceive that they lack the capacity, authority or resources to affect an outcome. Individuals with spinal cord injuries (SCIs) are at risk for powerlessness and have the potential to become empowered, but these concepts have not been explored within their context. The purpose of this study was to explore how individuals with SCI enact the empowerment process using Lord's (1991) process of empowerment framework. This study used a secondary analysis of a data set obtained from a mixed methods study exploring access to health and social care for 23 persons with SCI in Saskatchewan, Canada. The primary study data were collected from September 2012 to January 2013. The secondary analysis of data utilised a deductive thematic analysis approach and findings were conceptualised and applied to a model that represents the shift in balance between powerlessness and empowerment in individuals with SCI.

Access to health and support services: perspectives of people living with a long-term traumatic spinal cord injury in rural and urban areas.

PURPOSE: To examine the perspectives of persons living with traumatic spinal cord injuries (tSCI) on their access to health and support services. The specific aims were to identify the perceived gaps in access, classify the nature of the perceived gaps and compare differences in perceptions of access between urban and rural participants. METHOD: Using a descriptive, qualitative approach, semi-structured interviews were conducted with 23 adults living with tSCI, 13 of whom had paraplegia. Ten participants resided in rural areas and 16 were male. Thematic analysis allowed for the identification of patterns, which were then categorized according to the dimensions of access. RESULTS: Opportunities to engage in health-promoting activities through a broad range of health and support services were at times limited, particularly by issues of affordability. In addition to core healthcare services, participants reported the need for complementary therapies, sports and leisure, peer support, equipment and mobility related services. Availability and accessibility of services was limited in some cases for rural participants, although rural residence conferred other valued benefits. Narratives of "not being heard" by providers were common. CONCLUSIONS: Maintaining health and well-being in people with tSCI demands access to both conventional health care and support services. Implications for Rehabilitation Access to both health and support services are important to maintaining the health and wellness of people with spinal cord injury. People with spinal cord injuries take an active role in coordinating their health, at times assuming various roles to compensate for perceived shortcomings of health care providers. Negotiating balances of power with gatekeepers in the health and insurance sectors was a key function of the coordinating role assumed by people with spinal cord injury. In order to effectively address the needs of this population, a coordinated interdisciplinary out-reach service, which includes peer support, must cross boundaries to engage sectors beyond traditional health care services, such as insurers and wellness providers.

Meeting the privacy requirements for the development of a multi-centre patient registry in Canada: the Rick Hansen Spinal Cord Injury Registry.

Privacy legislation addresses concerns regarding the privacy of personal information; however, its interpretation by research ethics boards has resulted in significant challenges to the collection, management, use and disclosure of personal health information for multi-centre research studies. This paper describes the strategy used to develop the national Rick Hansen Spinal Cord Injury Registry (RHSCIR) in accordance with privacy statutes and benchmarked against best practices. An analysis of the regional and national privacy legislation was conducted to determine the requirements for each of the 31 local RHSCIR sites and the national RHSCIR office. A national privacy and security framework was created for RHSCIR that includes a governance structure, standard operating procedures, training processes, physical and technical security and privacy impact assessments. The framework meets a high-water mark in ensuring privacy and security of personal health information nationally and may assist in the development of other national or international research initiatives.

Cardiomyopathy presenting as severe fatigue in a person with chronic spinal cord injury.

BACKGROUND/OBJECTIVE: To describe a case of fatigue associated with cardiomyopathy in a man with spinal cord injury. STUDY DESIGN: Case report. SUBJECT: An obese 35-year-old man with long-term ASIA A L2 paraplegia, accompanied by a 2-year history of progressive severe fatigue. METHODS: Physical examination showed obesity, hypertension, tachycardia, and pitting edema. An echocardiogram showed a 20% ejection fraction, severe dilation, and global hypokinesis in the left ventricle and mild to moderate mitral regurgitation. RESULTS: Symptoms improved after treatment with furosemide, warfarin, ramipril, and continuous positive airway pressure for obstructive sleep apnea. CONCLUSION: Severe progressive fatigue in a patient with chronic SCI may signal cardiomyopathy. Diagnostic studies may be warranted in patients with progressive fatigue.