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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 81-90 of 130 results

Spinal Cord InjuryPatient ExperienceHealthcare

Views of people with traumatic spinal cord injury about the components of self-management programs and program delivery: a Canadian pilot study

BMC Neurology, 2014 • October 10, 2014

This study aimed to determine the importance of self-management program components for individuals with traumatic SCI and explore their views on program delivery. The results showed that exercise, nut...

KEY FINDING: Exercise, nutrition, pain management, information/education on aging with a SCI, and confidence were rated as 'very important' by the greatest proportion of participants.

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Spinal Cord InjuryPatient ExperienceAccessibility

Environmental barriers and subjective health among people with chronic spinal cord injury: A cohort study

The Journal of Spinal Cord Medicine, 2015 • July 1, 2015

This study investigated the impact of environmental barriers on the subjective health of individuals with chronic spinal cord injury (SCI) over a 5-year period. The research found that physical/struct...

KEY FINDING: Environmental barriers are prevalent among individuals with chronic SCI, with a significant percentage reporting issues with policies, physical structures, attitudes, support, services, and assistance.

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Spinal Cord InjuryPatient ExperienceRehabilitation

Starting a new conversation: Engaging Veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function

Disabil Health J, 2017 • January 1, 2017

This study used photovoice to understand how Veterans with SCI define function, the facilitators and barriers to function, and adaptations to support functioning. The study found that participants def...

KEY FINDING: Participants defined function in terms of 'normalcy,' aspects of daily living, and the ability to be independent.

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Spinal Cord InjuryUrologyPatient Experience

Feasibility of a Web-Based Self-Management Intervention for Intermittent Urinary Catheter Users with Spinal Cord Injury

J Wound Ostomy Continence Nurs, 2016 • September 1, 2016

The purpose of this study was to evaluate the feasibility of a new web-based intermittent catheter self-management intervention. Several catheter practices improved somewhat over three months includin...

KEY FINDING: Catheter practices improved, with more frequent catheterizations every 4–6 hours.

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Spinal Cord InjuryPatient ExperienceDermatology

Self-management interventions to improve skin care for pressure ulcer prevention in people with spinal cord injuries: a systematic review protocol

Systematic Reviews, 2016 • August 22, 2016

This systematic review aims to review the literature on self-management interventions to improve skin care in people with a SCI and to address the key elements that are important in advancing self-man...

KEY FINDING: The systematic review aims to identify active ingredients included in self-management interventions targeting skin care in people with a SCI.

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Patient ExperienceNeurorehabilitationTelehealth & Digital Health

Behavioral self-management strategies for practice and exercise should be included in neurologic rehabilitation trials and care

Curr Opin Neurol., 2016 • December 1, 2016

Motivation, sense of responsibility and confidence to practice and exercise in the home can be trained to increase adherence to skills practice and exercise both during and after formal rehabilitation...

KEY FINDING: Persons who need inpatient stroke rehabilitation do little walking 6-12 months later.

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Spinal Cord InjuryPatient ExperienceRehabilitation

A Narrative Literature Review to Direct Spinal Cord Injury Patient Education Programming

Top Spinal Cord Inj Rehabil, 2015 • January 1, 2015

To improve SCI education during rehabilitation, programs should maximize the receptiveness of newly injured patients to SCI-related information, optimize the delivery of SCI education, increase the nu...

KEY FINDING: Barriers to SCI education emerged as a particularly strong theme in the literature; 5 specific challenges were consistently identified.

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Spinal Cord InjuryPatient Experience

Breaking the news: A pilot study on patient perspectives of discussing prognosis after traumatic spinal cord injury

The Journal of Spinal Cord Medicine, 2016 • January 1, 2016

This pilot study investigates patient preferences for receiving prognosis information after traumatic SCI, focusing on the timing, messenger, and setting of the discussion. The results indicate that m...

KEY FINDING: Most patients prefer to receive their prognosis from a physician, specifically a surgeon or physiatrist.

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Spinal Cord InjuryParticipationPatient Experience

Overview of the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system

The Journal of Spinal Cord Medicine, 2015 • January 1, 2015

The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system was developed to address the unmet need for relevant and psychometrically sound patient-reported outcome measures in spinal cord i...

KEY FINDING: The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL).

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Spinal Cord InjuryParticipationPatient Experience

Methodology for the development and calibration of the SCI-QOL item banks

The Journal of Spinal Cord Medicine, 2015 • May 1, 2015

The Spinal Cord Injury-Quality of Life (SCI-QOL) measurement system has been developed over the past 10 years to address the unmet need for comprehensive, conceptually relevant, psychometrically sound...

KEY FINDING: We developed 14 unidimensional calibrated item banks and 3 calibrated scales across physical, emotional, and social health domains.

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