Aims: To explore patients' understanding of their orofacial pain, as this is an under-researched area despite emerging as a common aim of consultation.
Methods: Twelve people with chronic orofacial pain were interviewed shortly before their first consultation at a specialist facial pain clinic about their understanding of their pain, and they completed self-report measures of distress and pain interference. A day after the consultation, they wrote a short letter about how they now understood their pain and were then interviewed by phone. All accounts were analyzed using thematic analysis.
Results: Four themes emerged across preconsultation and postconsultation data: the need for information to counteract helplessness; worry as part of making sense of pain; validation of the pain experience (all predominant preconsultation); and the importance of trust (reflecting changes in understanding since consultation). Most patients changed their understanding of pain and resolved their worries to some extent, and they reported reduced distress and less interference.
Conclusion: Patients' fears and beliefs about chronic orofacial pain are dominated by worrying and searching for meaning before consultation. Information about their chronic pain condition counters feelings of helplessness and supports sense-making around pain when explanations are clear, are delivered sensitively from a trusted source, and take into account the patient's existing health beliefs; this promotes self-management. These findings underline the important functions of specialist consultation in achieving a shared accurate understanding of pain and options for treatment.