“But I know what works” – patients’ experience of spinal cord injury neuropathic pain management

Abstract

Purpose: To explore and obtain increased knowledge about (i) strategies and treatments used by individuals with neuropathic pain following spinal cord injury (SCI) for handling long-term pain, and (ii) their experience, needs and expectations of SCI neuropathic pain management. Methods: Qualitative methods with an emergent research design were used. Eighteen informants who suffered from long-term SCI neuropathic pain participated. Data were collected with diaries and thematized research interviews. Content analysis and constant comparison according to grounded theory were used for the analyses. Results: A model with four categories emerged: “Pain is my main problem” explained the impact of pain in the informants’ everyday life; “Drugs – the health care solution” described the informants’ experience of pain management; “The gap in my meeting with health care” described the discrepancy between what the informants wanted and what health care could offer. “But…this works for me” described treatments and strategies, which the informants found helpful for pain control and pain relief. Conclusion: Neuropathic pain, one of the major problems following SCI, is difficult to treat successfully. To improve treatment outcome, health care needs to listen to, respond to and respect the patient’s knowledge, experience and wishes. Future research needs to address treatments that patients find effective.

Implications for Rehabilitation

• Patients’ experiences, knowledge and preferences need to be taken into account when designing pain management.

• Complementary treatments (non-pharmacological) ought to be an important part of successful neuropathic pain management.

Keywords::

• Complementary treatment
• non-pharmacological treatment
• pain
• patient expectation
• spinal cord injury

Acknowledgement

We thank all our informants for their contribution, our co-workers Björn Börsbo in Jönköping, Birgitta Norell-Kågström in Sandviken, Lena Rutberg in Göteborg and Per Åkerlund/Helena Forsaeus in Falun; and finally our students Pauline de Bakker from the Netherlands and Louise Hansen from Denmark for literature review.

Declaration of Interest: We would like to thank the Swedish Cancer & Traffic Injury Society Fund [CTRF], the Swedish Association for Survivors of Accident and Injury [RTP], the Norrbacka-Eugenia Foundation, and the Karolinska Institutet Funds and Foundations for generous financial support.