Understanding the experiences, needs, and strengths of people with incomplete spinal cord injury who can ambulate

Abstract

Purpose

To identify the experiences, needs, and strengths of people with incomplete spinal cord injury who can ambulate and to explore and discuss potential supports, services, and programs that would best assist them in the community.

Material and methods

In this qualitative descriptive study, interviews were the primary means of data collection. These were supplemented with descriptive standardized measures of function and life satisfaction. Qualitative data were analyzed thematically.

Results

Twenty-four participants were interviewed, their average age was 55 years and 46% were female. We identified three themes: ‘I really couldn’t go there’, described the physical and social barriers experienced by participants, ‘It’d be really nice to let the public know there are people out there like me’ expressed the desire for greater social understanding of incomplete spinal cord injury, and ‘I just don’t quit’, displayed the perseverance that participants demonstrated following their injury.

Conclusion

Findings indicate service providers to improve the inclusion of ambulatory individuals with incomplete spinal cord injury in their programs. Suggestions include designing programs (community, healthcare, return to work, peer support), environments using the principles of universal design for people with incomplete spinal cord injury who ambulate, and increasing consideration of their perspectives.

Implication for rehabilitation:

• People with incomplete spinal cord injury who can ambulate live with invisible impairments, which are often not acknowledged by family, friends, health professionals, and people with complete spinal cord injury

• They may feel excluded from activities (organized by spinal cord injury associations) that were originally designed for people with complete spinal cord injury

• Greater awareness among health professionals, friends, family, and people with complete spinal cord injury of the needs of people with incomplete spinal cord injury who can ambulate is needed to increase their inclusion.

Keywords:

• Incomplete spinal cord injury
• experiences
• excluded
• social scrutiny
• resilience
• ambulate
• Needs
• invisible impairment

Acknowledgment

We would like to acknowledge our study participants for sharing their experiences and taking the time to contribute to this research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the ICORD Seed Grants and Dr. Mortenson’s work was supported by a New Investigator Award from the Canadian Institutes of Health Research.