Resilience in Persons Following Spinal Cord Injury

Resilience in People Following Spinal Cord Injury

This study aims to quantify resilience in survivors of a spinal cord injury. The study will consist of structured interviews and self-reported surveys. We will look for common themes between participants at different stages of injury (1-5 years, 5-15 years, >15 Years).

Study Overview

• Status: Completed
• Conditions: Spinal Cord Injuries
• Intervention / Treatment: Other: Structured Interview

Detailed Description

The goal of this project is to broaden the understanding of the lived experience of aging with a disability, from the perspectives of individuals with physical disabilities resulting from spinal cord injury (SCI). The specific objectives of this project are to:

1. Learn how people with SCI attain and maintain optimal quality of life as they age.
2. Understand how people with SCI develop resilience as they grow older.
3. Understand how individual quality of life is related to the degree and mechanism of resilience among people with SCI.
4. Learn which resources and practices have been most helpful and useful to people with SCI as they age with their disability.
5. Assess personal, behavioral, and environmental factors that contribute to resilience and quality of life among people aging with SCI.
6. Refine and confirm a holistic model for the relationships among the concepts of resilience, quality of life, and person-centered factors (resources, behaviors).

Through in-depth interviews and detailed surveys, we will explore how people with SCI attain and maintain optimal quality of life as they age, and how their quality of life relates to resiliency as they traverse the path of aging with SCI. We will explore with participants the resources and practices that have been most helpful and useful to them as they age with their disability.

• Study Type: Observational
• Enrollment (Actual): 28

Contacts and Locations

Study Locations

• United States
  • Illinois
    • Chicago, Illinois, United States, 60611
      • Shirley Ryan AbilityLab

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years to 80 years (Adult, Older Adult)
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

Persons who have experienced spinal cord injury at least 1 year prior to enrollment

Description

Inclusion Criteria:

• 18-80 years old
• History of Traumatic Spinal Cord Injury at least 1 year prior
• Ability to self-report on factors affecting health and well being Exclusion Criteria
• Progressive Spinal Cord Injury

Study Plan

How is the study designed?

Number of groups / cohorts

3

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
1-5 Years post; Persons with Spinal Cord Injury occurring between 1-5 years prior	Other: Structured Interview; Structured interview with research staff about your experience living with spinal cord injury
5-15 Years post; Persons with Spinal Cord Injury occurring between 5-15 years prior	Other: Structured Interview; Structured interview with research staff about your experience living with spinal cord injury
>15 Years post; Persons with Spinal Cord Injury occurring at least 15 years prior	Other: Structured Interview; Structured interview with research staff about your experience living with spinal cord injury

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Themes Survey	Common themes from the structured interviews	1 day (Single time point)

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Resilience	Measure of resilience from Connor-Davidson Resilience Scale [0-40], low score indicates greater resilience	1 day (Single time point)

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
Health Questionnaire Surveys	Short Form-12 Health Survey [30-70] 50 indicates US average, values higher than 50 indicate better outcomes	1 day (Single time point)

Collaborators and Investigators

• Sponsor: Shirley Ryan AbilityLab
• Collaborators: Kiwanis Neurological Research Foundation
• Investigators: Principal Investigator: Elliot Roth, MD, Shirley Ryan AbilityLab

Publications and helpful links

General Publications

• Roth EJ, Lovell L, Barry A. Perspectives on factors influencing quality of life in persons with long-term spinal cord injury: a qualitative study. Spinal Cord. 2024 Jun;62(6):343-347. doi: 10.1038/s41393-024-00991-w. Epub 2024 Apr 22.

Study record dates

Study Major Dates

• Study Start (Actual): September 25, 2020
• Primary Completion (Actual): October 1, 2022
• Study Completion (Actual): April 4, 2024

Study Registration Dates

• First Submitted: September 4, 2020
• First Submitted That Met QC Criteria: September 9, 2020
• First Posted (Actual): September 10, 2020

Study Record Updates

• Last Update Posted (Actual): March 20, 2026
• Last Update Submitted That Met QC Criteria: March 18, 2026
• Last Verified: April 1, 2024

More Information

Terms related to this study

• Keywords: Resilience
• Additional Relevant MeSH Terms: Central Nervous System Diseases; Nervous System Diseases; Wounds and Injuries; Trauma, Nervous System; Spinal Cord Diseases; Spinal Cord Injuries
• Other Study ID Numbers: STU00213014

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No