Spinal Cord Research Help
AboutCategoriesLatest ResearchContact
Subscribe
Spinal Cord Research Help

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

Quick Links

  • Home
  • About
  • Categories
  • Latest Research
  • Disclaimer

Contact

  • Contact Us
© 2025 Spinal Cord Research Help

All rights reserved.

  1. Home
  2. Categories
  3. Patient Experience

Patient Experience Research

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

Showing 31-40 of 130 results

Spinal Cord InjuryPatient ExperienceResearch Methodology & Design

The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study

PLoS ONE, 2024 • April 29, 2024

The study aimed to explore seriously injured rugby players’ perspectives on PPI in pre-clinical spinal cord research with specific objectives to (1) establish participants’ knowledge/experience of PPI...

KEY FINDING: People affected by spinal cord injury desire further involvement in pre-clinical research through dialogue and contact with researchers.

Read Summary
Spinal Cord InjuryPatient ExperienceSocial Support

“There’s always something, and then there’s more”: a qualitative examination of how virtual peer led self-management can create community around the evolving SCI experience

Frontiers in Rehabilitation Sciences, 2024 • April 29, 2024

This study qualitatively examined peer interactions within an online self-management program for individuals with spinal cord injury (SCI). The analysis revealed themes of resource sharing, skill-buil...

KEY FINDING: Participants engaged in skill-building, resource sharing, and problem-solving within the online forum.

Read Summary
Spinal Cord InjuryPatient ExperienceHealthcare

Is the Level of Consent to a National Research Registry Associated With Patient Outcomes After Traumatic Spinal Cord Injury? A Population-Based Study From the Rick Hansen Spinal Cord Injury Registry

American Journal of Physical Medicine & Rehabilitation, 2025 • February 1, 2025

This retrospective cohort study examined the association between the level of consent to the Rick Hansen Spinal Cord Injury Registry (RHSCIR) and patient outcomes after traumatic spinal cord injury (T...

KEY FINDING: Participants who declined community follow-up interviews but accepted minimal data collection had significantly longer acute length of stay compared to those who provided full consent.

Read Summary
Spinal Cord InjuryPatient ExperienceRehabilitation

“The Other Thousand Hours”: A Spinal Cord Injury Self-Management Program Qualitative Analysis

OTJR: Occupational Therapy Journal of Research, 2025 • January 1, 2024

This study sought to understand the experiences of participants who completed the SCISM program through qualitative analysis of semi-structured interviews after program completion. Participant’s respo...

KEY FINDING: Participants felt that the SCISM Program provided them with a sense of community that may be lacking in their physical environment or via social media.

Read Summary
Spinal Cord InjuryPatient ExperienceResearch Methodology & Design

The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: A Modified Delphi Study

Health Expectations, 2024 • June 19, 2024

This study aimed to develop key principles for PPI in preclinical spinal cord research to support researchers in conducting evidence‐informed PPI. Using a modified Delphi method, consensus was reached...

KEY FINDING: Consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable.

Read Summary
Spinal Cord InjuryPatient ExperienceMusculoskeletal Medicine

Bone health education in individuals with spinal cord injury or disease—the Bare Bones Podcast Series: plan it, produce it, post it!

Front. Rehabil. Sci., 2024 • July 16, 2024

The project successfully co-developed and disseminated a series of nine educational podcasts and related EATs, titled “The Bare Bones Podcast Series,” to educate individuals with SCI/D about bone heal...

KEY FINDING: Nine podcast episodes and related Educational Action Planning Tools (EATs) were co-developed with PLEX partners, reviewers, and expert panel members.

Read Summary
Spinal Cord InjuryPatient ExperienceResearch Methodology & Design

Perspectives of researchers and clinicians on patient and public involvement (PPI) in preclinical spinal cord research: An interview study

Health Expectations, 2024 • January 1, 2024

This study explored the perspectives of preclinical researchers and clinicians on PPI in preclinical spinal cord research, noting its potential benefits for research and researchers. Participants iden...

KEY FINDING: Participants believed that individuals affected by SCI have a right to be involved in research concerning their condition.

Read Summary
Spinal Cord InjuryPatient ExperienceTelehealth & Digital Health

Parkwood’s VIP4SCI platform: A virtual e-health self-management solution for persons with spinal cord injury across the care continuum

DIGITAL HEALTH, 2024 • July 9, 2024

The study evaluated the Parkwood VIP4SCI platform, a virtual e-health solution designed to improve self-management skills for individuals with spinal cord injury (SCI) during care transitions. Results...

KEY FINDING: The VIP4SCI platform was seen as usable and feasible by both patients and clinicians, with platform satisfaction scores ranging from +0.9 to +2.5 on a −3 to +3 scale.

Read Summary
Spinal Cord InjuryPatient ExperienceRehabilitation

Perceived Relational Empathy and Resilience in People with Spinal Cord Injury at the End of Acute Care: A Cross-Sectional Study

Healthcare, 2024 • August 6, 2024

This cross-sectional study investigated the relationship between perceived relational empathy, resilience, and various clinical and demographic variables in adult SCI patients at discharge from intens...

KEY FINDING: Perceived relational empathy was positively associated with resilience, suggesting that patients who felt more understood by their doctors exhibited greater resilience.

Read Summary
Patient ExperienceResearch Methodology & DesignMusculoskeletal Medicine

Rasch validation of the revised body awareness rating questionnaire (BARQ-R) in adults with and without musculoskeletal pain

BMC Musculoskeletal Disorders, 2024 • September 23, 2024

This study validated the structural validity of the BARQ-R using Rasch analysis in community-dwelling adults with and without musculoskeletal pain in the US, and validated previous Rasch analysis resu...

KEY FINDING: The 9-item Rasch-based BARQ-R had no misfitting items after rescoring 1 item and deleting 3 items in community-dwelling adults with and without musculoskeletal pain.

Read Summary
Previous
1...345...13
Next