Thriving after pediatric spinal cord injury: two life stories

Spinal Cord Series and Cases, 2021 · DOI: https://doi.org/10.1038/s41394-021-00392-8 · Published: February 12, 2021

Spinal Cord Injury Patient Experience Research Methodology & Design

Simple Explanation

This study explores the experiences of two adults who sustained spinal cord injuries (SCI) as children, using in-depth interviews to understand their lives. The interviews revealed common themes like adjusting to life with SCI, demonstrating resilience, relying on others, and experiencing personal growth after the traumatic event. The study highlights the importance of peer relationships and support networks in improving the quality of life for individuals with SCI.

Study Duration

20 weeks

Participants

Two adults with pediatric-onset SCI

Evidence Level

Not specified

Key Findings

1
Adjustment to life with SCI involves a grieving period and the importance of role models in developing perspectives on disability and future aspirations.
2
Hardiness, consisting of control, commitment, and challenge, is demonstrated through taking responsibility for one's decisions and reframing obstacles.
3
Interdependence and social support from coworkers, caregivers, and even strangers plays an important role in engagement and valued occupations after SCI

Research Summary

This qualitative study explored the lived experience of spinal cord injury (SCI) as described by life story interviews with two adults who sustained SCI as children. Four themes relevant to the experience of living with a chronic condition emerged: adjustment to life with SCI, hardiness, interdependence, and post-traumatic growth. The life story interview process proved to be an effective approach to understanding the lived experience of SCI as told by two adults with pediatric-onset SCI.

Practical Implications

Client-Centered Care

Understanding the lived experience of pediatric-onset SCI can promote client-centered care by helping medical and rehabilitation teams develop empathy for past traumatic events.

Resource Recognition

Providers of adults with pediatric-onset SCI enter the life story after many chapters have been written, and it is prudent to recognize that past experiences may be one of the greatest resources.

Future Research

Future narrative inquiry research in individuals with pediatric-onset SCI is necessary to build a representation of this population’s lived experiences.

Study Limitations

1
Findings from this study cannot be generalized to the larger population of adults with pediatric SCI.
2
The two participants were known to the investigators, and this relationship may have introduced bias.
3
The narrative smoothing analysis method also relied upon the authors’ interpretation of which details were most aligned with the purpose of the study which may have also introduced bias.

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