Perspectives on factors influencing quality of life in persons with long-term spinal cord injury: a qualitative study.

Study Design: Qualitative Cohort Study.

Objectives: Many people with long-term spinal cord injury (SCI) develop adaptation strategies to succeed. Understanding the factors that support their capacity to adapt and develop is important to enhance quality of life of others with SCI. This study aims to learn how these factors influence how people with SCI attain and maintain optimal quality of life as time since injury grows.

Setting: IL, USA.

Methods: A qualitative approach using one-on-one structured interviews with 16 individuals with long-term SCI was used to elicit perspectives of topics of importance. Analysis of these topics was done for the entire group, and for subgroups based on injury duration, i.e., 1-5 years, 5-15 years, and 15+ years post-injury. Deductive and inductive analyses of transcripts were performed.

Results: Five important themes emerged: 1. Injury, Medical Care, and Rehabilitation; 2. Built Environment and Accessibility; 3. Relationships and Support Systems; 4. Intrapersonal Thoughts and Emotions; and 5. Handling Challenges and Adversity. Topics of importance evolved over time. Most important were: 1-5 years: injury and recovery process; 5-15 years: navigating the community and how to handle difficult situations; and 15+ years: self-reflection and understanding how to handle challenges positively.

Conclusions: Recognition of the factors (e.g. resilience, self-acceptance, built environment) that contribute to quality of life in people with SCI, and their prevalence over time, enables development of strategies to facilitate personal fulfillment and favorable adaptation at each stage.

Trial Registration: This trial was posted on clinicaltrials.gov under NCT04544761.