A qualitative exploration of living with chronic neuropathic pain after spinal cord injury: an Italian perspective

Abstract

Purpose: To understand how people with spinal cord injury (SCI) in Italy experienced and managed chronic neuropathic pain (CNP), and their perspectives of Italian healthcare services. Method: Nine people with SCI participated. Two focus groups (3 and 4 individuals respectively) and one semi-structured interview were audio-recorded and transcribed. One “virtual interview” was conducted via email. A qualitative thematic analysis was undertaken. Results: Three main themes were identified. Firstly, participants experienced pain as a powerful, intrusive and, at times, inescapable force, with the potential to overwhelm the sense of self, and place limits on enjoyable experiences. Secondly, participants recounted a strong desire to understand CNP, and, in the absence of expert guidance, used trial-and-error methods to find ways of relieving pain. Thirdly, healthcare practice was perceived as pharmacologically-focused and lacking specialist knowledge. Practitioners were described as reluctant to explore alternative therapies or participate in collaborative, patient-centered care. Conclusions: This study reveals SCI-related CNP as a deeply troubling and psychologically distressing condition impacting widely on everyday life. Specialist, collaborative, individually-tailored rehabilitation approaches that attend to patients’ priorities and experiences, include education about CNP, and offer opportunities to explore complementary treatments, may be welcomed by people living with this condition in Italy.