scholarly journals Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study (Preprint)

2017 ◽  
Author(s):  
Sonya Allin ◽  
John Shepherd ◽  
Jennifer Tomasone ◽  
Sarah Munce ◽  
Gary Linassi ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Participatory Design ◽  
Spinal Cord Injuries ◽  
Advisory Council ◽  
Management Tool ◽  
Self Management ◽  
Advocacy Groups ◽  
Key Informants ◽  
Secondary Conditions ◽  
Cord Injury

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.

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

2018 ◽  
Vol 5 (1) ◽  
pp. e6 ◽  
Author(s):  
Sonya Allin ◽  
John Shepherd ◽  
Jennifer Tomasone ◽  
Sarah Munce ◽  
Gary Linassi ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Qualitative Study ◽  
Participatory Design ◽  
Management Tool ◽  
Self Management ◽  
Cord Injury

scholarly journals A Primary Care Provider’s Guide to Pediatric Spinal Cord Injuries

2020 ◽  
Vol 26 (2) ◽  
pp. 91-99
Author(s):  
Kathy Zebracki ◽  
Michelle Melicosta ◽  
Cody Unser ◽  
Lawrence C. Vogel
Keyword(s):  
Primary Care ◽  
Spinal Cord ◽  
Spinal Cord Injuries ◽  
Self Management ◽  
Childhood And Adolescence ◽  
Primary Care Clinician ◽  
Adult Onset ◽  
Management Skills ◽  
Cord Injury ◽  
Physical Changes

Spinal cord injury (SCI) in youth presents with unique manifestations and complications as compared to adult-onset SCI. The primary care clinician must consider the physical, physiological, cognitive, and psychological changes transpiring during childhood and adolescence. Physical changes include increasing size, weight, and bladder volume. Physiologic considerations include decreasing heart rate and increasing blood pressure with age. Cognitive issues include communication, executive functioning, and self-management skills. Lastly, psychological processes involve emotional functioning and establishment of self-identify and autonomy in the context of life with SCI.

scholarly journals Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation (Preprint)

2019 ◽  
Author(s):  
Sonya Allin ◽  
John Shepherd ◽  
Teri Thorson ◽  
Jennifer Tomasone ◽  
Sarah Munce ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Mixed Methods ◽  
Self Efficacy ◽  
Management Program ◽  
Self Management ◽  
Web Based ◽  
Secondary Conditions ◽  
Cord Injury ◽  
Before And After

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 <i>SCI &amp; U</i>. OBJECTIVE This study aims to evaluate the feasibility and potential impact of the <i>SCI &amp; U</i> 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&gt;0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g&gt;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.

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

10.2196/16351 ◽  
2020 ◽  
Vol 7 (2) ◽  
pp. e16351
Author(s):  
Sonya Allin ◽  
John Shepherd ◽  
Teri Thorson ◽  
Jennifer Tomasone ◽  
Sarah Munce ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Mixed Methods ◽  
Self Efficacy ◽  
Management Program ◽  
Self Management ◽  
Web Based ◽  
Secondary Conditions ◽  
Cord Injury ◽  
Before And After

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.

YouTube as an On-line Disability Self-Management Tool in Persons With Spinal Cord Injury

2011 ◽  
Vol 16 (3) ◽  
pp. 84-92 ◽  
Author(s):  
Alexander Libin ◽  
Manon Schladen ◽  
Inger Ljungberg ◽  
Brenda Tsai ◽  
Sydney Jacobs ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Management Tool ◽  
Self Management ◽  
Cord Injury ◽  
On Line

Impairment Rating and Spinal Cord Injuries: Revisiting the Guides

2010 ◽  
Vol 15 (3) ◽  
pp. 1-7
Author(s):  
Richard T. Katz
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injuries ◽  
Functional Independence ◽  
Outcome Data ◽  
Multiple Organ ◽  
Loss Of Function ◽  
Sixth Edition ◽  
Organ Systems ◽  
Cord Injury ◽  
Impairment Ratings

Abstract This article addresses some criticisms of the AMA Guides to the Evaluation of Permanent Impairment (AMA Guides) by comparing previously published outcome data from a group of complete spinal cord injury (SCI) persons with impairment ratings for a corresponding level of injury calculated using the AMA Guides, Sixth Edition. Results of the comparison show that impairment ratings using the sixth edition scale poorly with the level of impairments of activities of daily living (ADL) in SCI patients as assessed by the Functional Independence Measure (FIM) motor scale and the extended FIM motor scale. Because of the combinations of multiple impairments, the AMA Guides potentially overrates the impairment of paraplegics compared with that of quadriplegics. The use and applicability of the Combined Values formula should be further investigated, and complete loss of function of two upper extremities seems consistent with levels of quadriplegia using the SCI model. Some aspects of the AMA Guides contain inconsistencies. The concept of diminishing impairment values is not easily translated between specific losses of function per organ system and “overall” loss of ADLs involving multiple organ systems, and the notion of “catastrophic thresholds” involving multiple organ systems may support the understanding that variations in rating may exist in higher rating cases such as those that involve an SCI.

scholarly journals Development of priorities for a Canadian strategy to advance activity-based therapies after spinal cord injury

Spinal Cord ◽  
2021 ◽  
Author(s):  
Kristin E. Musselman ◽  
Kristen Walden ◽  
Vanessa K. Noonan ◽  
Hope Jervis-Rademeyer ◽  
Nancy Thorogood ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Stroke Rehabilitation ◽  
Participatory Design ◽  
Best Practice ◽  
Optimal Timing ◽  
Activity Levels ◽  
Cord Injury ◽  
Healthcare Administrators ◽  
Psychosocial Benefits

Abstract Study Design Participatory design. Objectives Activity-based therapies (ABT) have physical and psychosocial benefits for individuals with spinal cord injury (SCI). A Canadian ABT summit was held to: (1) identify methods used in stroke rehabilitation that may be appropriate for SCI; (2) understand the current state of ABT activities in Canada; and (3) identify priorities for ABT research and care for the next five years. Setting Stakeholder-engaged meeting at a tertiary rehabilitation hospital. Methods Thirty-nine stakeholders, including individuals with SCI, frontline clinicians, healthcare administrators, researchers, funders and health policy experts, attended. Two participants were note-takers. Priority identification occurred through input from stakeholder groups, followed by individual voting. Conventional content analysis was used to synthesize the information in the meeting notes. Results The strengths of ABT in stroke rehabilitation included clear and clinically feasible definitions, measurements and interventions, and recognized requirements for implementation (e.g. behavior change, partnerships). Knowledge gaps concerning ABT activities in Canada were identified for acute and community settings, non-traumatic populations, and the interventions, equipment and standardized measures (i.e. upper limb, activity levels) used. Five priorities for ABT across the continuum of care were identified: (1) Identify current ABT activities; (2) Create a network to facilitate dialog; (3) Track engagement in ABT activities; (4) Develop and implement best practice recommendations; and (5) Study optimal timing, methods, and dose of ABT. Working groups were formed to address priorities 1–3. Conclusions The priorities will guide SCI research and care activities in Canada over the next five years. Sponsorship Praxis Spinal Cord Institute.

scholarly journals Dietary Supplementation for Para-Athletes: A Systematic Review

Nutrients ◽  
2021 ◽  
Vol 13 (6) ◽  
pp. 2016
Author(s):  
Keely A. Shaw ◽  
Gordon A. Zello ◽  
Brian Bandy ◽  
Jongbum Ko ◽  
Leandy Bertrand ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Dietary Supplements ◽  
Sports Medicine ◽  
Spinal Cord Injuries ◽  
Sport Performance ◽  
Future Research ◽  
Inclusion Criteria ◽  
Supplement Use ◽  
Sport Supplements ◽  
Cord Injury

The use of dietary supplements is high among athletes and non-athletes alike, as well as able-bodied individuals and those with impairments. However, evidence is lacking in the use of dietary supplements for sport performance in a para-athlete population (e.g., those training for the Paralympics or similar competition). Our objective was to examine the literature regarding evidence for various sport supplements in a para-athlete population. A comprehensive literature search was conducted using PubMed, SPORTDiscus, MedLine, and Rehabilitation and Sports Medicine Source. Fifteen studies met our inclusion criteria and were included in our review. Seven varieties of supplements were investigated in the studies reviewed, including caffeine, creatine, buffering agents, fish oil, leucine, and vitamin D. The evidence for each of these supplements remains inconclusive, with varying results between studies. Limitations of research in this area include the heterogeneity of the subjects within the population regarding functionality and impairment. Very few studies included individuals with impairments other than spinal cord injury. Overall, more research is needed to strengthen the evidence for or against supplement use in para-athletes. Future research is also recommended on performance in para-athlete populations with classifiable impairments other than spinal cord injuries.

scholarly journals Housing adaptations and housing accessibility problems among older adults with long-standing spinal cord injury

2020 ◽  
pp. 030802262097951
Author(s):  
Lizette Norin ◽  
Björn Slaug ◽  
Maria Haak ◽  
Susanne Iwarsson
Keyword(s):  
Older Adults ◽  
Spinal Cord ◽  
Spinal Cord Injuries ◽  
Occupational Performance ◽  
Environmental Barriers ◽  
Cord Injury ◽  
Long Term Follow Up ◽  
Societal Level ◽  
The Individual

Introduction Adults with spinal cord injuries are living longer than previously, and a majority are living in ordinary housing in the community. Housing accessibility is important for maintaining independent occupational performance for this population, but knowledge in this area is insufficient. We investigated housing adaptations and current accessibility problems among older adults with long-standing (>10 years) spinal cord injuries. Method Data from home visits among 122 older adults with spinal cord injuries in Sweden were used. Housing adaptations and environmental barriers were descriptively analysed. Findings Kitchens, entrances, and hygiene areas were common locations for housing adaptations and environmental barriers that generated accessibility problems. The most common adaptations were ramps, wheelchair-accessible stovetops, and ceiling-lifts. Wall-mounted cupboards and high shelves (kitchen), inaccessible storage areas (outside the dwelling), and a lack of grab bars (hygiene area) generated the most accessibility problems. Conclusion Despite housing adaptations, there are considerable accessibility problems in the dwellings of older adults with long-standing spinal cord injuries in Sweden, indicating that long-term follow-up of the housing situation of this population is necessary. Focusing on accessible housing as a prerequisite for occupational performance is at the core of occupational therapy, deserving attention on the individual as well as the societal level.

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