Users’ experiences of an evidence-informed health information website for spinal cord injury: A prospective qualitative study across the hospital and community setting (Preprint)

2020 ◽  
Author(s):  
Christina Cassady ◽  
William Ben Mortenson ◽  
Andrea F Townson ◽  
Shannon Sproule ◽  
Janice Jennifer Eng
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Health Information ◽  
Information Needs ◽  
Information Source ◽  
Family Members ◽  
Hospital Setting ◽  
Community Setting ◽  
Therapeutic Education ◽  
Cord Injury

BACKGROUND Access to quality health information is essential for self-management after serious injuries such as spinal cord injury (SCI). OBJECTIVE The goal of this study was to evaluate the role of a consumer website in addressing the information needs of persons and families with SCI, as well as its impact on their knowledge and behaviour. METHODS Persons with SCI and family members were recruited from 3 settings: an acute hospital, a rehabilitation hospital, and an SCI community organization to acquire perspectives from early after injury to the chronic stage. Participants were introduced to the Spinal Cord Injury Research Evidence (SCIRE) Community website, which was an internet site developed to provide evidence-informed health information about SCI in everyday language. After using the SCIRE Community website for 4 weeks, semi-structured individual interviews were conducted to explore purposes of use, user experience, and impact on knowledge and behaviour. Interview transcripts were analyzed using qualitative thematic analysis. RESULTS The participants were 24 individuals (18 persons with SCI and 6 family members). Thirteen participants completed the study in a hospital setting and 11 participants in a community setting. We identified 3 main themes in the data: (1) ‘An internet tool to support and empower persons and families’ described the empowering nature of access to an independent information source which enabled persons and families with SCI to take a more active role in their care; (2) ‘an accessible source of credible information’ described how users valued easy to access content with oversight by experts (i.e., perceived to be trustworthy); and (3) ‘Opportunities to increase impact’ outlined suggestions on creating opportunities to engage with content through active learning strategies and community connections. CONCLUSIONS Persons and families with SCI valued having access to an independent online health information website, especially early after injury, as it helped to empower autonomy and facilitated better communication between persons and families and healthcare providers. Our study provides support for the value of internet-based health information as a supplementary tool for therapeutic education for persons and families with serious health conditions such as SCI.

An Assessment of Which Sociodemographic and Spinal Cord Injury–Specific Characteristics Influence Engagement With Experimental Therapies and Participation in Clinical Trials

2021 ◽  
Vol 27 (4) ◽  
pp. 28-39
Author(s):  
Carlotta Pazzi ◽  
Clara Farrehi ◽  
Maclain Capron ◽  
Kim Anderson ◽  
Bonnie Richardson ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Clinical Trials ◽  
Information Needs ◽  
Online Survey ◽  
Medical Center ◽  
Bladder Function ◽  
Cord Injury ◽  
Experimental Therapies ◽  
Trial Participants

Background: Although a number of experimental therapies for spinal cord injury (SCI) have recently emerged, few authors have examined the goals of individuals with SCI considering experimental therapies, and none have determined whether sociodemographic and injury-specific characteristics influence that engagement. Objectives: To determine (a) the goals of individuals with SCI who are considering experimental therapies; (b) whether sociodemographic factors, injury-specific characteristics, and concerns over adverse events influence those goals and/or participation in experimental therapies and clinical trials; and (c) whether people with SCI feel they have adequate information about experimental therapies and clinical trials. Methods: An online survey that yielded 364 responses. Results: Most respondents (83.7%) had sought information about experimental therapies, and just under half (47.8%) had received one. The most frequently cited functional goals were improvement in bowel and bladder function and elimination of dysreflexia (60.4%). Several goals were influenced by age and level and completeness of injury, and most respondents (93.4%) wanted more information about experimental therapies. Just over one-third (34.6%) of respondents had participated in a clinical trial, and nearly all (96.9%) wanted more information about them. Having received experimental therapies and participated in clinical trials was positively correlated with seeking SCI-specific care from an SCI specialist rather than from a primary care physician. Most (83.9%) respondents would avoid or be reluctant to engage with a medical center if they were made aware of harm done to trial participants. Conclusion: This work suggests that there are unmet information needs among people with SCI, specifically pertaining to experimental therapies and clinical trials. It also reveals that improved access to SCI specialists may enhance access to novel treatments and research efforts. Being made aware of harm to trial participants may influence the decision of individuals with SCI to seek care at or enroll in trials at these clinical sites.

Sources of stress in family members following head or spinal cord injury

1994 ◽  
Vol 1 (1-2) ◽  
pp. 57-62 ◽  
Author(s):  
D.P. Alfano ◽  
P.M. Neilson ◽  
M.P. Fink
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Family Members ◽  
Cord Injury

scholarly journals Information needs and information sources of individuals living with spinal cord injury

2006 ◽  
Vol 23 (4) ◽  
pp. 257-265 ◽  
Author(s):  
Jacquelyn A. Burkell ◽  
Dalton L. Wolfe ◽  
Patrick J. Potter ◽  
Jeffrey W. Jutai
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Information Needs ◽  
Information Sources ◽  
Cord Injury

scholarly journals Therapeutic education in persons with spinal cord injury: A review of the literature

2011 ◽  
Vol 54 (3) ◽  
pp. 189-210 ◽  
Author(s):  
A. Gélis ◽  
A. Stéfan ◽  
D. Colin ◽  
T. Albert ◽  
D. Gault ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Therapeutic Education ◽  
Review Of The Literature ◽  
Cord Injury

scholarly journals Assessing and predicting neuropathic pain after spinal cord injury: a TRACK-SCI study

2021 ◽  
Author(s):  
Kenneth A. Fond ◽  
Abel Torres-Espin ◽  
Austin Chou ◽  
Xuan Duong-Fernandez ◽  
Sara L. Moncivais ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Logistic Regression ◽  
Neuropathic Pain ◽  
Injury Severity ◽  
Hospital Setting ◽  
Study Cohort ◽  
Research Database ◽  
Pain Status ◽  
Cord Injury

Neuropathic pain is one of the most common secondary complications occurring after spinal cord injury (SCI), and often surpasses motor and sensory deficits in the patient population preferences of the most important aspects to be treated. Despite the better understanding of the molecular and physiological mechanisms of neuropathic pain, reliable treatments are still lacking and exhibit wide variations in efficiency. Previous reports have suggested that the most effective pain management is early treatment. To this end, we utilized the TRACK-SCI prospective clinical research database to assess the neuropathic pain status of all enrolled patients and identify acute care variables that can predict the development of neuropathic pain 6- and 12-months post SCI. 36 out of 61 patients of our study cohort reported neuropathic pain at the chronic stages post SCI. Using multidimensional analytics and logistic regression we discovered that (1) the number of total injuries the patient sustained, (2) the injury severity score (ISS), (3) the lower limb total motor score, and (4) the sensory pin prick total score together predict the development of chronic neuropathic pain after SCI. The balanced accuracy of the corresponding logistic regression model is 74.3%, and repeated 5-fold cross validation showed an AUC of 0.708. Our study suggests a crucial role of polytrauma in chronic pain development after SCI and offers a predictive model using variables routinely collected at every hospital setting.

A study of whether individual and dyadic relations between spirituality and resilience contribute to psychological adjustment among individuals with spinal cord injuries and their family members

2019 ◽  
Vol 33 (9) ◽  
pp. 1503-1514 ◽  
Author(s):  
Kate Fiona Jones ◽  
Grahame Simpson ◽  
Lynne Briggs ◽  
Pat Dorsett ◽  
Malcolm Anderson
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Spinal Cord Injuries ◽  
Satisfaction With Life ◽  
Family Members ◽  
Well Being ◽  
Satisfaction With Life Scale ◽  
Cord Injury ◽  
Spiritual Well Being ◽  
The Impact

Objective: To test a model of spiritual well-being and resilience among individuals with spinal cord injuries and their family members. Design: Prospective cross-sectional observational data were analyzed by structural equation modelling. Setting: Inpatient and community services at one rehabilitation hospital. Subjects: Individual with spinal cord injury ( n = 50) and family member ( n = 50) dyads. Interventions: Standard rehabilitation, both inpatient and community. Main measure(s): Functional assessment of chronic illness therapy – spiritual well-being scale – expanded, Connor–Davidson resilience scale, positive and negative affect scale, depression anxiety and stress scale–21, satisfaction with life scale. Results: Median time post-injury was 8.95 months (IQR (interquartile range) = 14.15). Individuals with spinal cord injury and family members reported high scores for both spiritual well-being (66.06 ± 14.89; 68.42 ± 13.75) and resilience (76.68 ± 13.88; 76.64 ± 11.75), respectively. Analysis found the model had acceptable fit (e.g. chi-square goodness of fit statistic = 38.789; P = .263). For individuals with spinal cord injury, spiritual well-being was positively associated with resilience which, in turn, was associated with increasing positive affect and satisfaction with life. Among family members, spiritual well-being was positively associated with resilience. Resilience was then associated with lowered levels of depression and mediated the impact of depression on satisfaction with life. Limited evidence was found for mutual dyadic links, with the only significant pathway finding that resilience in the individual with spinal cord injury was associated with increased satisfaction with life among family members. Conclusion: Increased spirituality and resilience make a significant contribution (both independently and in combination) to positive psychological outcomes for both individuals with spinal cord injury and their family members.

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