Buscemi Valentina, Cassidy Elizabeth, Kilbride Cherry, Reynolds Frances Ann
a Department of Clinical Sciences , College of Health and Life Sciences, Brunel University London , Uxbridge , United Kingdom.
Disabil Rehabil. 2018 Mar;40(5):577-586. doi: 10.1080/09638288.2016.1271023. Epub 2017 Jan 5.
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.
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.
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.
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.
本研究旨在了解意大利脊髓损伤（SCI）患者如何体验和应对慢性神经性疼痛（CNP），以及他们对意大利医疗服务的看法。
9名脊髓损伤患者参与研究。对两个焦点小组（分别为3人和4人）以及1次半结构式访谈进行了录音和转录。通过电子邮件进行了1次“虚拟访谈”。进行了定性主题分析。
确定了三个主要主题。首先，参与者将疼痛体验为一种强大、侵扰性且有时无法逃避的力量，有可能压倒自我意识，并限制愉快体验。其次，参与者讲述了强烈渴望了解慢性神经性疼痛的愿望，并且在缺乏专家指导的情况下，采用试错方法寻找缓解疼痛的方法。第三，医疗实践被认为以药物治疗为主，缺乏专业知识。从业者被描述为不愿探索替代疗法或参与以患者为中心的协作式护理。
本研究表明，与脊髓损伤相关的慢性神经性疼痛是一种令人深感困扰和心理痛苦的状况，对日常生活有广泛影响。针对患者的优先事项和体验、包括提供有关慢性神经性疼痛的教育并提供探索补充治疗机会的专业、协作式、个性化康复方法，可能会受到意大利患有这种疾病的人的欢迎。
对康复的启示
在意大利患有与脊髓损伤相关的慢性神经性疼痛的人表示疼痛缓解不足且无效。慢性神经性疼痛对身体、心理和社会功能的影响重大，但可能是一个仍被健康专业人员低估的问题。健康专业人员可以通过提供长期、个性化、协作式和专业性支持，更好地支持在意大利患有与脊髓损伤相关的慢性神经性疼痛的患者。由患者主导的持续讨论论坛，在其中可以分享经验、想法和信息，可能对脊髓损伤患者长期应对疼痛有所帮助。
