Wells Anna, Gray Debra, Husted Margaret, Stephensen David
Department of Psychology, University of Winchester, Winchester, UK.
Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UK.
Can J Pain. 2025 Sep 4;9(1):2530966. doi: 10.1080/24740527.2025.2530966. eCollection 2025.
Hemophilia is a bleeding disorder characterized by recurrent bleeding into muscles and joints. Many people with hemophilia experience multiple traumatic painful bleeding episodes, meaning that pain is often a significant problem for people with hemophilia, with a potentially high prevalence of posttraumatic stress and posttraumatic stress disorder symptoms. Current pain treatments are often ineffective and do not consider pain memories, which are experienced by almost half of people with posttraumatic stress disorder and which has not been explored in people with hemophilia. To fill this gap, 14 semistructured interviews with men with hemophilia were completed between November 2022 and January 2023 to explore their lived experiences of pain relating to their hemophilia. Data were analyzed using reflexive thematic analysis. Three overarching themes were constructed from the data: "trauma histories," "pain management," and "impact on the present." Findings show that pain experienced by people with hemophilia is complex and does include a memory element for many individuals. Pain memories are clear and vivid and include visual, somatic, and emotional elements in intricate detail. Pain can also be experienced in the present when experiencing a pain flashback, and pain in the present can be a trigger to recalling and re-experiencing pain memories from the past. Self-taught active dissociation from pain, imagery, and distraction were described as useful pain management strategies. Findings from this study have implications for clinicians and service providers because current pharmacological and physical pain management techniques may be ineffective when pain memory is involved. Future interventions should consider how pain management is advanced for people with hemophilia and how hemophilia services become trauma informed.
血友病是一种出血性疾病，其特征是肌肉和关节反复出血。许多血友病患者经历过多次创伤性疼痛性出血发作，这意味着疼痛对血友病患者来说往往是一个重大问题，创伤后应激和创伤后应激障碍症状的患病率可能很高。目前的疼痛治疗往往无效，且未考虑疼痛记忆，几乎一半的创伤后应激障碍患者会经历疼痛记忆，而血友病患者的这一情况尚未得到研究。为了填补这一空白，2022年11月至2023年1月期间，对14名血友病男性患者进行了半结构化访谈，以探讨他们与血友病相关的疼痛生活经历。采用反思性主题分析法对数据进行了分析。从数据中构建了三个总体主题：“创伤史”、“疼痛管理”和“对当下的影响”。研究结果表明，血友病患者经历的疼痛很复杂，许多人确实存在疼痛记忆元素。疼痛记忆清晰而生动，包括视觉、躯体和情感等错综复杂的细节元素。在经历疼痛闪回时，当下也会感受到疼痛，而当下的疼痛可能会触发对过去疼痛记忆的回忆和重新体验。自学的主动从疼痛、意象和分心状态中解离出来被描述为有用的疼痛管理策略。这项研究的结果对临床医生和服务提供者具有启示意义，因为当涉及疼痛记忆时，当前的药物和物理疼痛管理技术可能无效。未来的干预措施应考虑如何改进血友病患者的疼痛管理，以及血友病服务如何具备创伤知情意识。
