PURPOSE: The purpose of this study is 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 (three and four individuals) and one semi-structured interview were audio-recorded and transcribed. One "virtual interview" was conducted via e-mail. A qualitative thematic analysis was undertaken. RESULTS: Three main themes were identified. First, 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. Second, 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. Third, 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-centred 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. Implications for Rehabilitation People living in Italy with SCI-related CNP describe inadequate and ineffective pain relief. The impact of CNP on physical, psychological and social functioning is significant but may be an issue that continues to be underestimated by health professionals. Health professionals may better support patients living in Italy with SCI-related CNP by providing long-term, individualized, collaborative and specialist support. Ongoing, patient-led discussion forums where experiences, ideas and information can be shared may be useful to persons with SCI to help them cope with their pain over the long-term.
PURPOSE: The purpose of this study is 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 (three and four individuals) and one semi-structured interview were audio-recorded and transcribed. One "virtual interview" was conducted via e-mail. A qualitative thematic analysis was undertaken. RESULTS: Three main themes were identified. First, 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. Second, 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. Third, 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-centred 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. Implications for Rehabilitation People living in Italy with SCI-related CNP describe inadequate and ineffective pain relief. The impact of CNP on physical, psychological and social functioning is significant but may be an issue that continues to be underestimated by health professionals. Health professionals may better support patients living in Italy with SCI-related CNP by providing long-term, individualized, collaborative and specialist support. Ongoing, patient-led discussion forums where experiences, ideas and information can be shared may be useful to persons with SCI to help them cope with their pain over the long-term.
Authors: Lauren Cadel; Claudia DeLuca; Sander L Hitzig; Tanya L Packer; Aisha K Lofters; Tejal Patel; Sara J T Guilcher Journal: J Spinal Cord Med Date: 2018-10-18 Impact factor: 1.985