Spinal Cord Injury. An Interpretative Phenomenological Analysis of - - PowerPoint PPT Presentation

Chronic Neuropathic Pain after Spinal Cord Injury.

An Interpretative Phenomenological Analysis of the Biopsychosocial Experience.

• Jasmine Hearn

DPhil Psychology (Research) Student University of Buckingham jasmine.hearn@buckingham.ac.uk

• Dr Katherine Finlay

Lecturer in Psychology, Health Psychologist University of Buckingham

• Dr Philip Fine

Lecturer in Psychology University of Buckingham

• Dr Imogen Cotter

Clinical Psychologist National Spinal Injuries Centre

Background

• Neuropathic pain arises from nerve damage.
• Over 60% of those with a spinal cord injury (SCI)

suffer with chronic neuropathic pain (Kennedy et al, 1997; Modirian et al, 2010; Ulrich et al, 2007).

• This pain is debilitating, persistent over time, and

resistant to treatment (Modirian et al, 2010; Siddall et al, 2003; Warms et al, 2002).

• Pain reduces quality of life (Donnelly & Eng, 2005),

and increases risk of depression and anxiety (Perry et al, 2009).

Current State of the Literature Base

• Accepted view of pain from biopsychosocial

model.

• Majority of neuropathic pain in SCI research is

quantitative.

• Lack of understanding of the lived experience.
• Is there an aspect that isn’t being studied and

treated?

This Study

• Aim

▫ To understand the experience of chronic neuropathic pain after SCI from a patient perspective, using a qualitative methodology.

• Design

▫ Qualitative, single interview study

• Analysis

▫ Interpretative Phenomenological Analysis (IPA)

Method

• Participants

▫ 8 outpatient participants were included in the analysis ▫ All had diagnosed neuropathic pain as a result of SCI

• Interviews

▫ Semi-structured, open-ended questions ▫ Audio recorded ▫ At time, day and location most convenient for the participants.

• Ethics

▫ NHS REC Ref: 13/LO/0558 ▫ R&D ▫ The University of Buckingham School of Science Ethics Committee ▫ National Spinal Injuries Centre

Results

• 3 Superordinate Themes:

▫ The Chasm Between Biomedical Perspectives and Patient Beliefs and Needs ▫ The Battle for Ultimate Agency of Life ▫ The Coexistence of Social Cohesion and Social Alienation

Presence of Each Superordinate Theme

N.B. Names changed to protect the patients’ identity

Superordinate Theme Breakdown

• The Chasm Between Biomedical and Patient Beliefs

and Needs

▫ Excessive Reliance on Insufficient Medication ▫ Relationships with HCPs: Losing Faith ▫ Lack of Input into own Care

• The Battle for Ultimate Agency in Life

▫ Pain is Winning ▫ I am Winning

• The Coexistence of Social Cohesion and Social

Alienation

▫ SCI Population are United but Alone in Experience ▫ Painful Self as an Affliction on Able-Bodied

The Chasm Between Biomedical and Patient Beliefs and Needs

• Excessive Reliance on Insufficient Medication

▫ … all these kinds of drugs, but, I’ve tried them, and I’ve rejected them. Because it makes no difference whether I have them and I’m not prepared to take high doses constantly, and be a zombie, and I’d rather put up with a bit of pain than take those drugs and have a blank mind. Because that’s how they make you feel. It’s like your thoughts are trying to fight their way through a thick lump of fog. ▫ Harry: 6, 135-139

The Chasm Between Biomedical and Patient Beliefs and Needs

• Relationships with HCPs: Losing Faith

▫ Like I’ve said to my doctors … it’s taken this long to get an appointment sorted out. As soon as I went to [local hospital] they were like couldn’t believe that I wasn’t with a pain team … they said “your doctor should have done it”. But my doctor said to ring them, when I said “I haven’t got a number”, he looked at a bit of paper and said “well I haven’t got the number either”. So I was like, alright well that’s a load of good then. ▫ Daniel: 18, 427-432

The Chasm Between Biomedical and Patient Beliefs and Needs

• Lack of Input into own Care

▫ I felt I went to my GP and I felt so frustrated that my whole life was being judged by someone else in order to say “no well we know better than you”. As much as it’s my [said with emphasis] experience, it’s my pain, I’m telling you my experience, you don’t seem to be listening because you’re not giving me what works for me. ▫ Emma: 21, 492-496

The Battle for Ultimate Agency of Life

• Pain is Winning

▫ … you can’t get rid of it, you can’t escape it. James: 13, 323 ▫ … the only way that I can describe it is that … you’re doing whatever you’re doing … and a little person inside flicks a switch and shuts you down. It just, literally just collapse. ▫ James: 14, 330-332

The Battle for Ultimate Agency in Life

• I am Winning

▫ Either you give up and die, or you get on with it. So I get on with it … and I bounce back again, I’m fine ... I’m not selfish or anything but, to do with the pain side I’m not going to let it get in the way

• f it. You know what I mean take over.

▫ Rebecca: 10, 224-229

The Coexistence of Social Cohesion and Social Alienation

• SCI Population are United but Alone in

Experience

▫ I think being around people in wheelchairs more might give me … [unfinished sentence] I’m looking forward to that … that’s why they call [specialised spinal unit] bubble world, because everyone’s the same, you don’t feel like an

• utcast, do you know what I mean?

▫ Daniel: 20, 480-482

The Coexistence of Social Cohesion and Social Alienation

• Painful Self as an Affliction on Able-Bodied

▫ … my wife, she retreats into her shell when I’m in agony, she’s seen it so many times [. . .] and because it impacts on her so much, she could even … enter a sort

• f phase of to get on with it you know. “For God’s

sakes”, you know? Become irritable with me … ▫ Harry: 14, 319-322 ▫ … it makes me feel as if my pain is responsible for her emotional pain … it makes me feel uncomfortable … because she loves me she doesn’t want me to be so distressed and knowing that I am distressed with all the pain and there’s nothing she can do. ▫ Harry: 14, 328-332

Discussion

• Confirms of biopsychosocial model in experience of

SCI pain.

• Identifying discrepancies between support currently
• ffered and the support that patients want/need:

▫ HCPs should offer more than just medication. ▫ Need to teach SCI patients how to regain control over their lives. ▫ Support for pain education for able-bodied family and friends.

• Knowing which aspects of the pain experience

influence an outpatient’s well-being.

• Enhanced outpatient support from healthcare

professionals.

Next Steps

• Questions:

▫ Are these experiences specific to outpatients? ▫ How do inpatients experience neuropathic pain?

• Inpatient Phase (Ethics approved)

▫ Match current study for comparison ▫ Potential to map the ‘journey’ of pain from inpatient to outpatient. ▫ Does pain change from in- to outpatient?

• Room for future research:

▫ Why is medication ineffective? ▫ Interventions for teaching life control? Mindfulness? ▫ How does pain education for friends and family affect outcomes?

References

• Cardenas, D. D., Turner, J. A., Warms, C. A., & Marshall, H. M. (2002). Classification of chronic pain

associated with spinal cord injuries. Archives of Physical Medicine and Rehabilitation. 83(12), pp. 1708- 1714.

• Donnelly, C., & Eng, J. J. (2005). Pain following spinal cord injury: the impact on community
• reintegration. Spinal Cord. 43(5) pp. 278-282.
• Kennedy, P., Frankel, H., Gardner, B., & Nuseibeh, I. (1997). Factors associated with acute and chronic

pain following traumatic spinal cord injuries. Spinal Cord. 35 pp. 814-817.

• Modirian E., Pirouzi P., Soroush M., Karbalaei-Esmaeili S., Shojaei H., & Zamani H. (2010). Chronic pain

after spinal cord injury:results of a long-term study. Pain Medicine. 11(7) pp. 1037-1043.

• Perry, K. N., Nicholas, M. K., & Middleton, J. (2009). Spinal cord injury-related pain in rehabilitation: A

cross-sectional study of relationships with cognitions, mood and physical function. European Journal of

• Pain. 13(5) pp. 511-517.
• Siddall, P. J., McClelland, J. M., Rutkowski, S. B., & Cousins, M. J. (2003). A longitudinal study of the

prevalence and characteristics of pain in the first 5 years following spinal cord injury. Pain. 103 pp. 249- 257.

• Smith, J. A. (1996). “Beyond the divide between cognition and discourse: Using interpretative

phenomenological analysis in health psychology”. Psychology and Health, 11, pp. 261-271.

• Ullrich, P., Jensen, M., Loeser, J., & Cardenas, D. (2007). Catastrophising mediates associations between

pain severity, psychological distress, and functional disability among persons with spinal cord injury. RehabilitationPsychology, 52, (4), pp. 390-398

• Warms, C. A., Turner, J. A., Marshall, H. M., & Cardenas, D. D. (2002). Treatments for chronic pain

associated with spinal cord injuries: Many are tried, few are helpful. Clinical Journal of Pain. 18, pp. 154.

• Werhagen, L., Budh, C. N., Hultling, C., & Molander,. C. (2004). Neuropathic pain after traumatic spinal

cord injury – relations to gender, spinal level, completeness, and age at the time of injury. Spinal Cord. 42,

• pp. 665-673.

Thank you!