Determinants of participating in life after spinal cord injury – advice for health professionals arising from an examination of shared narratives

Abstract

Purpose: To explore the perceived determinants of participation in life after spinal cord injury and incorporate these into a framework for the promotion of participation suitable for use by rehabilitation professionals.

Method: Four people with spinal cord injury and one health service researcher engaged in a process of sharing narratives of life after spinal cord injury over a period of one year. The narratives were distilled using thematic analysis.

Results: The relevant subset of data from the narratives categorized as This is what we think determines our participation in life was analyzed in depth to reveal nine themes (1) The world can be my friend or foe; (2) I am who I am; (3) It is a personal journey; (4) Some like to talk, others like to do; (5) We have the technology; (6) A support network is vital and it can be built; (7) Life involves tradeoffs; (8) Push; and (9) Be flexible. These themes were combined into a framework for the promotion of participation to be used by rehabilitation professionals. The collaboratively developed framework has three aspects – Help me, Encourage me and Accept.

Conclusion: The proposed participation promotion framework is grounded in the narratives of the research group but needs to be tested before it can be endorsed for practice.

- Implications for Rehabilitation - In order to promote participation in life after spinal cord injury rehabilitation professionals can help people with spinal cord injury to negotiate the world, build and maintain a support crew and access equipment and technology.

- Spinal cord injury rehabilitation professionals can encourage people with spinal cord injury to push themselves, be assertive and be flexible, as these attributes can assist participation in life after spinal cord injury.

- In the pursuit of participation goals, rehabilitation professionals must accept the individuality of each person with spinal cord injury, respect that they may or may not be willing to make tradeoffs to achieve participation goals and that they are on an ever changing life journey.