N07 ‘It’s about willpower in the end. You’ve got to keep going’: a qualitative study exploring the experience of pain in inflammatory bowel disease
L. Sweeney*1, R. Moss-Morris2, W. Czuber-Dochan1, L. Belotti1, Z. Kabeli1, C. Norton1
1King's College London, Faculty of Nursing, Midwifery and Palliative Care, London, UK, 2King's College London, Health Psychology Section, London, UK
Pain is a widely experienced symptom of inflammatory bowel disease (IBD), which has significant psychological and functional impacts on patients. Despite this, the aetiology of chronic pain and pain management is a poorly understood area of IBD research. This qualitative study aimed to gain an insight into the experiences of individuals with IBD and pain, the pain management strategies they use and any needs for future pain management interventions.
Participants who previously completed a questionnaire on pain in IBD and consented to follow-up interviews were selected using a purposive sampling framework. Fourteen individuals with IBD were interviewed (either face-to-face or telephone) using a topic guide. Interviews were transcribed and analysed using inductive thematic analysis.
Themes identified were ‘vicious cycles’, ‘findings solutions’ and ‘attitudes’. The experience and impact of pain were rarely viewed in isolation, but rather within the context of a cycle of IBD symptoms, particularly fatigue and urgency. Other ‘vicious cycles’ identified included anxiety, avoidance and inactivity and poor understanding and communication. Pain management strategies varied considerably between patients, with many using a variety of short and long-term strategies. The continued search for a solution to their pain had an emotional impact on individuals. There were contrasting attitudes from different participants, including defeat, tolerance and acceptance.
This study provides an understanding of the experience and impact of pain in IBD. The interaction of pain with accompanying IBD symptoms has an emotional and physical impact on patients, and creates a barrier to adequate assessment, understanding and treatment of pain. Due to inconclusive and inconsistent evidence in pain management for IBD, patients largely rely on their own experiences and a trial and error approach to apply helpful strategies. Over time this can be mentally draining and exhausting for patients. Adjuvant behavioural therapies may be beneficial for patients experiencing pain and psychological distress, and may enable self-management.