Spinal Cord Injury
Conditions
Keywords
peer support, self-management, spinal cord injury, newly injured, web-based program
Brief summary
The goal of this clinical trial is to learn if the online program and web-based platform for delivery of self-management services to people with spinal cord injury (SCI) called SCI & U can support transitions from hospital to the community after injury. Specifically, can providing support from trained peer health coaches via the SCI & U web-based self-management program increase health self-management among those within three years of a spinal cord injury with a planned discharge to or living in the community with SCI for less than two years in the province of British Columbia, Canada or the state of Connecticut, United States. The main question it aims to answer is: • Does the SCI & U web-based self-management program lower emotional distress and increase self-efficacy Researchers will compare those who participate in SCI & U with those who receive usual peer support after 6 months to see if the SCI & U program improves self-management knowledge, skills and self-efficacy and decreases secondary complications Participants will: * engage in up to 14 online sessions, each of which lasts about an hour with a peer health coach trained in motivational interviewing, goal setting and brief action planning. During sessions, they may also review resources and create follow up plans on the online platform on health management topics * complete an interviewer administered survey at baseline, 6 and 12 months
Interventions
BEHAVIORALweb-based spinal cord injury self-management program
Peer health coaches will be recruited from the United Spinal Connecticut Chapter and SCI BC. They will be at least 5 years post-SCI and will be certified in brief action planning and in Mental Health First Aid. Online coaching sessions are expected to cover a health-related topic (eg. bladder, bowel, skin, pain, healthy eating, physical activity or stress, anxiety and depression etc) and a self-management skill topic (eg.action planning, goal setting, problem-solving, mood management, navigating the health care system, communicating with health care providers). To ensure we meet the unique needs of participants, the coach and participant will determine jointly how many sessions to spend on a topic. In addition, coaches will be able to link relevant information and resources contained in the resource library to each session.
BEHAVIORALPeer support
Existing peer support program from the United Spinal Connecticut Chapter or SCI BC
Sponsors
University of Toronto
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
DOUBLE (Investigator, Outcomes Assessor)
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* 18 years and older, with a planned discharge to or living in community with SCI for no more than three years since injury and with the ability to speak and understand English
Exclusion criteria
* not a member of or willing to become a member of SCI BC or SCIACT
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Emotional Distress Subscale in Health Education Impact Questionnaire | From baseline assessment to 6 months followup | The Emotional Distress construct measures overall negative affect including worry, depression and anger. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Positive and Active Engagement in Life in Health Education Impact Questionnaire | From baseline assessment to 6 months followup | — |
| Self-monitoring and Insight in Health Education Impact Questionnaire | From baseline assessment to 6 months followup | — |
| Constructive Attitudes and Approaches in Health Education Impact Questionnaire | From baseline assessment to 6 months followup | — |
| Skill and Technique Acquisition in Health Education Impact Questionnaire | From baseline assessment to 6 months followup | — |
| Social Integration and Support in Health Education Impact Questionnaire | From baseline assessment to 6 months followup | — |
| Health Directed Activities in Health Education Impact Questionnaire | From baseline assessment to 6 months followup | — |
| The Patient Activation Measure - (PAM) Survey | From baseline assessment to 6 months followup | The Patient Activation Measure (PAM) is a commercial product which assesses an individual's knowledge, skill, and confidence for managing one's health and healthcare. The PAM survey measures patients on a 0-100 scale and can segment patients into one of four activation levels. Individuals who measure high on this assessment typically understand the importance of taking a pro-active role in managing their health and have the skills and confidence to do so. |
| Moorong Self-Efficacy Scale | From baseline assessment to 6 months followup | Measures self-efficacy in performing functional activities of daily living in individuals with SCI. Consists of two factors: daily activities (e.g., I can maintain my personal hygiene with or without help), and social functioning (e.g., I can enjoy spending time with my friends) |
| Secondary Conditions Scale | From baseline assessment to 6 months followup | A 16-item self-report measure that targets secondary conditions associated with SCI that impact health on a 4-point scale from not experienced in the last 3 months to significant or chronic problem |
| NIH Toolbox Loneliness Scale | From baseline assessment to 6 months followup | — |
| System Usability Scale | From baseline assessment to 6 months followup | This scale was designed to evaluate the usability of interactive systems flexibly and expediently. |
| Health Services Navigation in Health Education Impact Questionnaire | From baseline assessment to 6 months followup | — |
Countries
Canada, United States
Contacts
Primary ContactSusan Jaglal, PhD
Backup ContactDiana Pernigotti
Outcome results
None listed