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

Spinal Cord (2024)Cite this article

Subjects

Abstract

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.

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Data availability

De-identified transcript data can be obtained by contacting the corresponding author.

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Acknowledgements

This work was supported by the Kiwanis Neuroscience Research Foundation, the Foundation for Physical Medicine and Rehabilitation, and the Shirley Ryan AbilityLab. We would like to thank Dr. Marquis Winston for interviewing our final study participant.

Funding

This study was supported by the Kiwanis Neurological Research Foundation, the Foundation for Physical Medicine and Rehabilitation, and the Shirley Ryan AbilityLab.

Author information

Authors and Affiliations

  1. Shirley Ryan AbilityLab, Chicago, IL, USA

    Elliot J. Roth, Linda Lovell & Alexander Barry

  2. Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Elliot J. Roth

Authors
  1. Elliot J. Roth
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  2. Linda Lovell
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  3. Alexander Barry
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Contributions

EJR was responsible for inception of the study, obtaining funding, writing protocol, interpreting results, finding interview themes, and writing this manuscript. LL was responsible for study inception, writing protocol, reviewing transcripts, finding interview themes and topics, and writing this manuscript. AJB was responsible for writing the protocol, conducting all interviews, creating study documents, data collection, writing the code for transcription, disseminating de-identified transcripts to the study team, finding interview themes, manually coding all transcripts into themes, coded data analysis, and the writing of this manuscript.

Corresponding author

Correspondence to Alexander Barry.

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Competing interests

The authors declare no competing interests.

Ethical approval

This study was approved by the Northwestern University Institutional Review Board.

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Roth, E.J., 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). https://doi.org/10.1038/s41393-024-00991-w

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