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Making Spinal Cord Injury (SCI) Research Accessible to Everyone. Simplified summaries of the latest research, designed for patients, caregivers and anybody who's interested.

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Patient Experience Research

Browse the latest research summaries in the field of patient experience for spinal cord injury patients and caregivers.

Showing 111-120 of 130 results

Patient ExperienceRehabilitationSocial Support

Effects of family group conferences among high-risk patients of chronic disability and their significant others: study protocol for a multicentre controlled trial

BMJ Open, 2018 • January 15, 2018

This multicentre controlled trial evaluates the effectiveness and implementation of Family Group Conferences (FGC) in rehabilitation medicine to improve future treatment. The study focuses on patient,...

KEY FINDING: The study aims to examine if optimizing decision-making during Family Group Conferences (FGCs) increases empowerment in both the patient and their significant other.

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Spinal Cord InjuryParticipationPatient Experience

Preferences of adults with spinal cord injury for widely used health-related quality of life and subjective well-being measures

The Journal of Spinal Cord Medicine, 2019 • May 1, 2019

This study examined preferences of adults with spinal cord injury for widely used HRQOL and SWB instruments in two small samples in the US (N = 10) and the UK (N = 10). The participants who rated surv...

KEY FINDING: Participants in both the US and the UK identified the Fatigue Severity Scale (FSS) as particularly important for their medical providers to know about.

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Spinal Cord InjuryPatient ExperienceDermatology

Self-management interventions for skin care in people with a spinal cord injury: part 2—a systematic review of use of theory and quality of intervention reporting

Spinal Cord, 2018 • May 25, 2018

This systematic review examined the use of theory and the quality of reporting in self-management interventions for skin care in people with spinal cord injuries (SCI). The review found that the use o...

KEY FINDING: Only 35% of the reviewed interventions reported using a theoretical basis for their design.

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UrologyPatient Experience

Preliminary validation of a Urinary Symptom Questionnaire for individuals with Neuropathic Bladder using Intermittent Catheterization (USQNB-IC): A patient-centered patient reported outcome

PLoS ONE, 2018 • July 10, 2018

This study presents the development and preliminary validation of the USQNB-IC, a patient-centered questionnaire for assessing urinary symptoms in individuals with neurogenic bladder using intermitten...

KEY FINDING: The USQNB-IC demonstrated face, content, criterion, convergent, and divergent validity, as well as reliability.

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Patient ExperienceEducationNutrition & Dietetics

Innovation in medical education: a culinary coaching tele-nutrition training program

Medical Education Online, 2018 • August 3, 2018

This short communication describes the first synchronous tele-nutrition medical education training program using a novel Culinary Coaching (CC) model. CC training significantly improved coaches’ attit...

KEY FINDING: The culinary coaching (CC) training program significantly improved coaches’ attitudes about delivering CC from pre-program means of 3.61 to post-program means, 3.77 (p<0.01).

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Spinal Cord InjuryPatient ExperienceTelehealth & Digital Health

Translating a spinal cord injury self-management intervention for online and telehealth delivery: A community-engaged research approach

The Journal of Spinal Cord Medicine, 2019 • September 1, 2019

This study evaluated the use of tablet computers, online content management platform, and video conferencing for delivery of a peer-supported, spinal cord injury self-management intervention. The stud...

KEY FINDING: Participants were receptive and satisfied with the iPad and iTunes U platform and the video chat experience.

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Spinal Cord InjuryPatient ExperienceResearch Methodology & Design

Experience and Utility of Using the Participatory Research Method, Photovoice, in Individuals With Spinal Cord Injury

Top Spinal Cord Inj Rehabil, 2018 • February 12, 2018

This study examined the feasibility and experiences of using photovoice methodology with Veterans with spinal cord injuries/disorders (SCI/D). The findings suggest that photovoice is a feasible and de...

KEY FINDING: Participants discussed challenges with taking photographs, but they enjoyed participating, appreciated inclusion, and hoped the information they provided would help others with disabilities.

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Spinal Cord InjuryPatient ExperiencePublic Health

Experiences With Navigating and Managing Information in the Community Following Spinal Cord Injury

Top Spinal Cord Inj Rehabil, 2018 • May 3, 2018

This study investigated the experiences of people with spinal cord injury (SCI) in navigating and managing health information within their communities. It highlighted that while individuals receive su...

KEY FINDING: People living with SCI use multiple sources of information, including health professionals, peer support networks, and the Internet, to prevent and manage secondary conditions.

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Spinal Cord InjuryPatient ExperiencePharmacology

Attitudes toward and knowledge of medical cannabis among individuals with spinal cord injury

Spinal Cord Series and Cases, 2019 • January 1, 2019

This study assessed attitudes toward and knowledge of cannabis among a nationwide sample of people with SCI. Participants largely believed that cannabis use is safe, has potential therapeutic benefits...

KEY FINDING: Most participants believed cannabis is safe, has medicinal benefits, and should be legal.

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Spinal Cord InjuryPatient ExperienceBrain Injury

Interviewer- vs. Self-administration of PROMIS Measures for Adults with Traumatic Injury

Health Psychol, 2019 • May 1, 2019

This study evaluated mode-of-administration effects in a sample of participants with SCI or TBI for whom interviewer-administered measures may be an especially important option. Adults with SCI or TBI...

KEY FINDING: PROMIS instruments demonstrated measurement equivalence across interviewer- administered and self-administered conditions.

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