How do people understand their neuropathic pain? A Q-study

Abstract

Neuropathic pain (NP) is not easy to understand for those with the diagnosis. Even in specialist medical services, explanation may not be given or may not be integrated with patients' existing beliefs about their conditions. We were curious about how people with NP conceptualised the problem. Web sites relevant to NP were used to recruit 79 people with NP. They were sampled using Q-methodology, which requires sorting according to degree of agreement or disagreement with diverse statements about NP, derived from the widest possible range of sources. The sets of sorted statements are analysed for factors which represent shared constructions. The four factors that we found differed in important ways: (1) identification of nerve damage as cause; (2) the necessity of identifying cause; (3) the acceptability of symptomatic treatment; (4) the existence or not of psychological influences; and (5) the usefulness of psychological treatment. The meaning of these factors was extended by participants' free comments: certain viewpoints showed associations with their medical and treatment histories and with the interference of pain with daily life. Overall, a biopsychosocial model of pain was only weakly represented, and no integrated model of pain emerged across the four different accounts. There was little reference to NP having been explained when the diagnosis was made. This study highlights the need for more accessible explanations of NP within and outside medical services if people with NP are to use their understanding of NP to help them manage their pain and reduce its impact on their lives.

Keywords: Lay understanding; Nerve damage; Psychological treatment.