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Improving Self-Management Skills Among People With Spinal Cord Injury: Protocol for a Mixed-Methods Study.

ABSTRACT: BACKGROUND:Most people with spinal cord injury will develop secondary complications with potentially devastating consequences. Self-management is a key prevention strategy for averting the development of secondary complications and their recurrence. Several studies have shown that self-management programs improve self-management behaviors and health outcomes in individuals living with chronic conditions such as asthma, diabetes, hypertension, and arthritis. Given the burgeoning health care costs related to secondary complications, we developed an alternative electronic health-based implementation to facilitate the development of self-management skills among people with spinal cord injury. OBJECTIVE:This study aims to evaluate the efficacy of a self-management app in spinal cord injury populations. The primary outcome is attainment of self-selected, self-management goals. Secondary outcomes include increases in general and self-management self-efficacy and reductions in self-reported health events, health care utilization, and secondary complications related to spinal cord injury. This study also aims to explore how the intervention was implemented and how the app was experienced by end users. METHODS:This study will employ a mix of qualitative and quantitative methods. The quantitative portion of our study will involve a rater-blinded, randomized controlled trial with a stepped wedge design (ie, delayed intervention control group). The primary outcome is successful goal attainment, and secondary outcomes include increases in self-efficacy and reductions in self-reported health events, health care utilization, and secondary conditions related to spinal cord injury. The qualitative portion will consist of semistructured interviews with a subsample of the participants. RESULTS:We expect that the mobile self-management app will help people with spinal cord injury to attain their self-management goals, improve their self-efficacy, reduce secondary complications, and decrease health care utilization. CONCLUSIONS:If the results are positive, this study will produce credible new knowledge describing multiple outcomes that people with spinal cord injury realize from an app-based self-management intervention and support its implementation in clinical practice. TRIAL REGISTRATION:ClinicalTrials.gov NCT03140501; http://clinicaltrials.gov/ct2/show/NCT03140501 (Archived by WebCite at http://www.webcitation.org/73Gw0ZlWZ). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):PRR1-10.2196/11069.

SUBMITTER: Mortenson WB

PROVIDER: S-EPMC6301832 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Improving Self-Management Skills Among People With Spinal Cord Injury: Protocol for a Mixed-Methods Study.

Mortenson W Ben WB Mills Patricia Branco PB Adams Jared J Singh Gurkaran G MacGillivray Megan M Sawatzky Bonita B

JMIR research protocols 20181114 11

<h4>Background</h4>Most people with spinal cord injury will develop secondary complications with potentially devastating consequences. Self-management is a key prevention strategy for averting the development of secondary complications and their recurrence. Several studies have shown that self-management programs improve self-management behaviors and health outcomes in individuals living with chronic conditions such as asthma, diabetes, hypertension, and arthritis. Given the burgeoning health ca ...[more]

PMID: 30429114

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Project description:BackgroundRobotic hand orthoses (RHO) aim to provide grasp assistance for people with sensorimotor hand impairment during daily tasks. Many of such devices have been shown to bring a functional benefit to the user. However, assessing functional benefit is not sufficient to evaluate the usability of such technologies for daily life application. A comprehensive and structured evaluation of device usability not only focusing on effectiveness but also efficiency and satisfaction is required, yet often falls short in existing literature. Mixed methods evaluations, i.e., assessing a combination of quantitative and qualitative measures, allow to obtain a more holistic picture of all relevant aspects of device usability. Considering these aspects already in early development stages allows to identify design issues and generate generalizable benchmarks for future developments.MethodsWe evaluated the short-term usability of the RELab tenoexo, a RHO for hand function assistance, in 15 users with tetraplegia after a spinal cord injury through a comprehensive mixed methods approach. We collected quantitative data using the Action Research Arm Test (ARAT), the System Usability Scale (SUS), and timed tasks such as the donning process. In addition, qualitative data were collected through semi-structured interviews and user observations, and analyzed with a thematic analysis to enhance the usability evaluation. All insights were attributed and discussed in relation to specifically defined usability attributes such as comfort, ease of use, functional benefit, and safety.ResultsThe RELab tenoexo provided an immediate functional benefit to the users, resulting in a mean improvement of the ARAT score by 5.8 points and peaking at 15 points improvement for one user (clinically important difference: 5.7 points). The mean SUS rating of 60.6 represents an adequate usability, however, indicating that especially the RHO donning (average task time = 295 s) was perceived as too long and cumbersome. The participants were generally very satisfied with the ergonomics (size, dimensions, fit) of the RHO. Enhancing the ease of use, specifically in donning, increasing the provided grasping force, as well as the availability of tailoring options and customization were identified as main improvement areas to promote RHO usability.ConclusionThe short-term usability of the RELab tenoexo was thoroughly evaluated with a mixed methods approach, which generated valuable data to improve the RHO in future iterations. In addition, learnings that might be transferable to the evaluation and design of other RHO were generated, which have the potential to increase the daily life applicability and acceptance of similar technologies.

Project description:BackgroundBacteriuria, either asymptomatic (ASB) or symptomatic, urinary tract infection (UTI), is common in persons with spinal cord injury (SCI). Current Veterans Health Administration (VHA) guidelines recommend a screening urinalysis and urine culture for every veteran with SCI during annual evaluation, even when asymptomatic, which is contrary to other national guidelines. Our preliminary data suggest that a positive urine culture (even without signs or symptoms of infection) drives antibiotic use.ObjectiveThrough a series of innovative studies utilizing mixed methods, administrative databases, and focus groups, we will gain further knowledge about the attitudes driving current urine testing practices during the annual exam, as well as quantitative data on the clinical outcomes of these practices.MethodsAim 1 will identify patient, provider, and facility factors driving bacteriuria testing and subsequent antibiotic use after the SCI annual evaluation through qualitative interviews and quantitative surveys. Aim 2 will use national VHA databases to identify the predictors of urine testing and subsequent antibiotic use during the annual examination and compare the clinical outcomes of those who received antibiotics with those who did not. Aim 3 will use the information gathered from the previous 2 aims to develop the Test Smart, Treat Smart intervention, a combination of patient and provider education and resources that will help stakeholders have informed conversations about urine testing and antibiotic use; feasibility will be tested at a single site.ResultsThis protocol received institutional review board and VHA Research and Development approval in July 2017, and Veterans Affairs Health Services Research and Development funding started on November 2017. As of submission of this manuscript, 10/15 (67%) of the target goal of provider interviews were complete, and 77/100 (77%) of the goal of surveys. With regard to patients, 5/15 (33%) of the target goal of interviews were complete, and 20/100 (20%) of the target goal of surveys had been completed. Preliminary analyses are ongoing; the study team plans to present these results in April 2019. Database analyses for aim 2 will begin in January 2019.ConclusionsThe negative consequences of antibiotic overuse and antibiotic resistance are well-documented and have national and even global implications. This study will develop an intervention aimed to educate stakeholders on evidence-based management of ASB and UTI and guide antibiotic stewardship in this high-risk population. The next step will be to refine the intervention and test its feasibility and effectiveness at multiple sites as well as reform policy for management of this common but burdensome condition.International registered report identifier (irrid)DERR1-10.2196/12272.

Project description:For safe application of exoskeletons in people with spinal cord injury at home or in the community, it is required to have completed an exoskeleton training in which users learn to perform basic and advanced skills. So far, a framework to test exoskeleton skills is lacking. The aim of this study was to develop and test the hierarchy and reliability of a framework for measuring the progress in the ability to perform basic and advanced skills. Twelve participants with paraplegia were given twenty-four training sessions in 8 weeks with the Rewalk-exoskeleton. During the 2nd, 4th, and 6th training week the Intermediate-skills-test was performed consisting of 27 skills, measured in an hierarchical order of difficulty, until two skills were not achieved. When participants could walk independently, the Final-skills-test, consisting of 20 skills, was performed in the last training session. Each skill was performed at least two times with a maximum of three attempts. As a reliability measure the consistency was used, which was the number of skills performed the same in the first two attempts relative to the total number. Ten participants completed the training program. Their number of achieved intermediate skills was significantly different between the measurements XF2(2) = 12.36, p = 0.001. Post-hoc analysis revealed a significant increase in the median achieved intermediate skills from 4 [1-7] at the first to 10.5 [5-26] at the third Intermediate-skills-test. The rate of participants who achieved the intermediate skills decreased and the coefficient of reproducibility was 0.98. Eight participants met the criteria to perform the Final-skills-test. Their median number of successfully performed final skills was 16.5 [13-20] and 17 [14-19] skills in the first and second time. The overall consistency of >70% was achieved in the Intermediate-skills-test (73%) and the Final-skills-test (81%). Eight out of twelve participants experienced skin damage during the training, in four participants this resulted in missed training sessions. The framework proposed in this study measured the progress in performing basic and advanced exoskeleton skills during a training program. The hierarchical ordered skills-test could discriminate across participants' skill-level and the overall consistency was considered acceptable.

Project description:BackgroundIndividuals 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.ObjectiveThis study aims to evaluate the feasibility and potential impact of the SCI & U program in the context of a mixed methods pilot study.MethodsThe 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.ResultsOf 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.ConclusionsResults 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.

Project description:BACKGROUND:Spinal cord injury (SCI) is a debilitating injury that results in chronic paralysis, impaired functioning, and drastically altered quality of life (QOL). The Department of Veterans Affairs (VA) estimates that approximately 450 newly injured veterans and active-duty members receive rehabilitation at VA's Spinal Cord Injury/Disorders Centers annually. VA virtual health services use technology and health informatics to provide veterans with better access and more effective care management. The "Triangle of Healthy Caregiving for SCI Veterans" is a patient-centered intervention that incorporates SCI veterans' caregivers into the VA SCI health care team and extends into the homes of veterans with SCI by using real-time clinical video teleconferencing (CVT). CVT facilitates video-clinic visits, which can include different types of clinical evaluations, therapy (physical/occupational), or psychosocial services. The "Triangle of Healthy Caregiving for SCI Veterans" builds on interactive, interdisciplinary health care relationships that exist between the veterans with SCI, their caregivers, and the VA SCI health care team. SCI veterans' propensity to multiple secondary complications makes a healthy partnership crucial for the success of keeping better health and functional outcomes as well as quality of life while living in their homes. OBJECTIVE:The goal of the proposed mixed methods project will assess SCI veterans', their caregivers', and the VA health care team's perspectives and experiences in the "Triangle of Healthy Caregiving for SCI Veterans" to determine the benefits, challenges, and outcomes for everyone involved in the intervention. METHODS:Data collection methods will be implemented over three sequential phases. First, in-depth interviews will be conducted with the telehealth coordinators to systematically document the administrative procedures involved in enrollment of veterans with SCI into the CVT system. Next, structured observation of the CVT enrollment process and logistics of home installation of the CVT system will be conducted to validate the content of the in-depth interviews and highlight any discrepancies observed. Semistructured interviews will be conducted to assess specific elements of the "Triangle of Healthy Caregiving for SCI Veterans" program, their perceived utility, and effectiveness of the CVT system as well as the general impressions of the impact of the intervention on the SCI veterans' health and function outcomes, caregiver burden, and daily caregiver burden. Finally, the research team will conduct a focus group to evaluate the ways in which the "Triangle of Healthy Caregiving for SCI Veterans" is useful for health care delivery to veterans with SCI and support services to SCI caregivers. RESULTS:This proposal was funded in July 2017. It was reviewed and received institutional review board approval in March 2018, and the project was started immediately after, in the same month. As of September 2019, we have completed Phases I and III and have recruited 52 subjects for Phase II. We are beginning the data analysis. The study is projected to be completed in late summer of 2020, and the expected results are to be published in the fall of 2020. CONCLUSIONS:The findings from this study will highlight the ways in which virtual health care technologies can be used to improve access to SCI specialized care for veterans and provide an estimation of the potential impact on clinical outcomes for veterans with SCI and their caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):DERR1-10.2196/14051.

Project description:BackgroundMobile health applications can offer tailored self-management support to individuals living with chronic health conditions. However, there are several challenges to the adoption of these technologies in practice. Co-design is a promising approach to overcoming some of these challenges by enabling the development of solutions that meet the actual needs and preferences of the relevant stakeholder groups.ObjectiveTaking spinal cord injury as a case in point, the overall objectives of this study were to identify the perceived benefits of a co-designed self-management app that could promote its uptake and to explore the factors that may impede adoption.MethodsWe adopted a qualitative research approach guided by the Technology Acceptance Model. Data were collected through semistructured interviews with individuals with spinal cord injury (n=15) and two focus groups with health care professionals specialized in spinal cord injury (n=7, n=5). Prior to the interviews and focus groups, study participants were given time to explore the app prototype. All interviews were transcribed verbatim and analyzed using inductive thematic analysis.ResultsFindings of our analysis indicate that study participants perceived the app prototype as potentially useful for supporting individuals with spinal cord injury in preventing pressure injuries. In particular, we identified three concrete use cases highlighting the benefits of the app for different audiences: (1) a companion for newly injured individuals, (2) an emergency kit and motivational support, and 3) a guide for informal caregivers and family members. We also uncovered several challenges that might impede the adoption of the self-management app in practice, including (1) challenges in motivating individuals to use the app, (2) concerns about the misuse and abuse of the app, and (3) organizational and maintenance challenges.ConclusionsThis study adds to a growing body of research that investigates individuals' adoption and nonadoption behavior regarding mobile health solutions. Building on earlier work, we make recommendations on how to address the barriers to the adoption of mobile health solutions identified by this study. In particular, there is a need to foster trust in mobile health among prospective users, including both patients and health care professionals. Moreover, increasing personal relevance of mobile health solutions through personalization may be a promising approach to promote uptake. Last but not least, organizational support also plays an instrumental role in mobile health adoption. We conclude that even though co-design is promoted as a promising approach to develop self-management tools, co-design does not guarantee adoption. More research is needed to identify the most promising strategies to promote the adoption of evidence-based mobile health solutions in practice.

Dataset Information

Improving Self-Management Skills Among People With Spinal Cord Injury: Protocol for a Mixed-Methods Study.

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Improving Self-Management Skills Among People With Spinal Cord Injury: Protocol for a Mixed-Methods Study.

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