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Abstract
Purpose: The study investigated the experience of community (re)integration from the perspective of people with spinal cord injury (SCI) within 12 months of discharge from a specialist spinal injuries unit in New Zealand (NZ).
Method: Nine participants were interviewed. The verbatim transcripts were analysed using Interpretive Phenomenological Analysis (IPA).
Results: Three main themes were: Leaving, Not Coping with a Capital C, and Power and Control. Leaving related to the process of planning for, and discharge from the spinal unit. Not Coping with a Capital C incorporated the coping and adjustment to life following a SCI, including the role of hope. Power and Control denoted the alteration in balance of power and control following SCI which was evident both in the rehabilitation facility and within the wider community setting.
Conclusions: The results indicated that the spinal unit may not adequately equip the recovering person with SCI for life in the real world. Individuals with SCI returning to the community remained hopeful of recovery of function and or cure; this focus, particularly on physical rehabilitation, potentially reduced their availability for other forms of community reintegration such as work and leisure activities.
Implications for Rehabilitation
Participants may benefit from a focus on real world activities during rehabilitation following SCI.
Clinicians need to teach skills not only specific to the rehabilitation environment, but problem-solving skills or methods to adapt skills to enable recovering persons to manage environments encountered at home in the “real world”. One simple example would be to carry out varied community outings as part of the “rehabilitation experience.”
Participants were focussed on the two year period following SCI as one in which they remained hopeful of further recovery of function and or cure, this may delay participation in other aspects of community reintegration. Clinicians may be able to reframe traditional therapy into more integrative activities such as attending a community gym with friends, or home based exercises which do not rely on therapist input to encourage community reintegration.
Acknowledgements
Dr Sarah Dean’s position at the Peninsula College of Medicine and Dentistry, University of Exeter and time on this project is supported through the Peninsula Collaboration for Leadership in Applied Health Research and Care (PenCLAHRC), funded by the National Institute of Health Research, UK and the views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
This study was completed in partial fulfilment of the requirements for Ms Nunnerley’s Master of Health Science, University of Otago. She would like to acknowledge the financial assistance and support of the Burwood Academy of Independent Living and Canterbury District Health Board. The authors would also like to acknowledge the participants of the study.
Declaration of Interest: This project received funding from a Rehabilitation and Disability Research Theme grant, Otago University. The Burwood Academy of Independent Living and the Canterbury District Health board contributed towards university fees for the primary Author. The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
Appendix. Questions face to face interview
Leaving the spinal unit
1. Tell me about your experience of leaving the spinal unit.
Possible prompts
How prepared were you for leaving the spinal unit?
If you had to go through the process again what would you do differently?
What tips/advice would you give to someone in the same position?
What were the best things about leaving the spinal unit?
What were the hardest things about leaving the spinal unit?
What impact did ACC (or your relationship with ACC) have on this process?
Leaving the spinal unit community for the wider (non-spinal unit) community
2. So you’re out, tell me about that.
Possible prompts
What do you think has had the most impact on returning to live in the wider community again?
How did the spinal unit prepare you?
Were there other key elements in your preparation?
What went well?
What went less well?
Being part of the wider community again
3. In the phone interview you told me what community meant to you. How has this changed since your SCI?
4. What helps you feel/would make you feel part of your community?
Possible prompts
What does the community need to contribute to help you feel part of it?
What are the most important things that help you feel part of the community?
In what way are these important?
Are these things different to what you thought would be important when you were still in the spinal unit?
Who are the most important people influencing your ability to be back in the community?
In what way are these people important?
What part has your family/friends/whanau played?
What do you think your family/friends/whanau would say were the biggest difficulties of being part of the community again?
5. How did the community react to your return? Were you treated the same or differently?
Use of time.
6. So how do you fill your day?
How different is that to before your accident?
In an ideal world how would you fill your day?
How are you adjusting to your new life?
7. How important is it for you to be physically active or participate in fitness activity?
What is the most important element in your life?
Employment
8. Do you have any plans to return to work?
9. How has your relationship with your friends and family changed since your accident?
10. What do you consider your most significant achievement since discharge?
11. Can you think of any questions you think I should have asked you?
12. Is there anything else you would like to tell me about your experience?