Living with chronic neuropathic pain after spinal cord injury: an interpretative phenomenological analysis of community experience

Abstract

Purpose: This article presents an in-depth, idiographic study examining the lived experience of chronic pain following spinal cord injury (SCI). Neuropathic pain (NP) occurs in a large majority of the SCI population and is particularly intractable to treatment. It can be both psychologically and physically debilitating. This study examines how the experience of NP is mediated by its meaning to the sufferer. Methods: Semi-structured interviews were conducted with eight people with SCI and chronic NP, attending outpatient clinics at a specialist SCI Centre in the UK. Verbatim transcripts were subjected to interpretative phenomenological analysis to further understand the experience. Results: Analysis suggested that NP has powerful consequences upon the sufferer’s physical, psychological and social well-being, in line with a biopsychosocial understanding of pain. Three super-ordinate themes were identified: a perceived gap between treatments received and participants’ views of what they wanted and needed; a fight for life control and acceptance; and feeling understood by others with SCI, but isolated from the non-understanding able-bodied. Conclusions: The results are discussed in terms of the possible application of acceptance-based therapy to NP and the potential for the alleviation of the debilitating consequences of NP.

Implications for Rehabilitation

• Chronic NP after SCI is often described as worse than the injury itself, often impacting upon the sufferers physical and psychological health.

• The experiences of persons with SCI-specific NP highlight the impact of pain on their physical, psychological and social health. This indicates that healthcare professionals should incorporate a biopsychosocial approach for managing pain post-SCI.

• Routine clinical follow-up of SCI patients with chronic NP, as well as comprehensive pain management treatment programmes, could address the three themes evidenced in the current study, by moving routine intervention with NP away from pain relief, towards pain management.

• Continued education for patients, friends, family members and healthcare professionals may be beneficial in promoting understanding and awareness of NP and its consequences following SCI.

• Acceptance
• biopsychosocial
• pain
• pharmacological treatment
• social isolation
• spinal cord injury

Acknowledgements

We would like to thank all of the participants and staff at The National Spinal Injuries Centre, Stoke Mandeville Hospital, for their time and co-operation.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Notes

¹(…) represents removed text.

²[text in square brackets] represents descriptive information provided by the author.

³… represents a pause in speech.