Coleman Beth, Ellis-Caird Helen, McGowan John, Benjamin Maxwell J
Early Intervention for Psychosis Service, Kent and Medway NHS and Social Care Partnership Trust, Gillingham, UK.
Sickle Cell and Thalassaemia Service, The Whittington Hospital NHS Trust, London, UK.
Br J Health Psychol. 2016 Feb;21(1):190-203. doi: 10.1111/bjhp.12157. Epub 2015 Sep 2.
Sickle cell disease (SCD) is the UK's most common blood disorder causing sickle shaped red blood cells to block small blood vessels inducing both acute and chronic pain. A crucial factor in determining quality of life for those with SCD is the severity, timing and number of painful sickling episodes. However, little research focuses on the nature of pain and so it is poorly understood. The aim of this study is to provide an in-depth and meaning led account of the experience of SCD pain.
Qualitative research design.
Seven face-to-face semi-structured interviews were conducted. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis.
Participants described experiencing unimaginable, agonising, continuous, inescapable and limitless pain which was almost impossible to describe; participants resorted to using analogy and personification as a way to overcome this difficulty. Participants spoke about a process where, ultimately, they felt obliged to accept their illness as it would never be cured; but were able to appreciate life and recognize positive life lessons as a result of living with SCD.
This research indicates that therapeutic work around analogy can help individuals understand and express their pain and that current attempts to measure pain are unhelpful for SCD populations. Further research is needed across a wider SCD population to forward the findings of this qualitative study.
What is already known on this subject? Sickle cell disease (SCD) has an impact on all aspects of a person's life (Edwards et al., 2005, International Journal of Behavioral Medicine, 12, 171). Strickland , Jackson, Gilead, McGuire, and Quarles (2001, Journal of the National Black Nurses' Association, 12, 36) suggest that one of the crucial factors in determining quality of life for those with SCD is the severity, timing and number of painful sickling episodes. Exacerbations of pain are also cited as explanation for the majority of medical contacts for people with SCD (McClish et al., 2009, Pain, 145, 246). The majority of research focuses on the consequences of pain in terms of handicap, and its impact on emotional well-being, relationships and the need for medication/hospital treatment (Booker et al., 2006, Chronic Illness, 2, 39; Weisberg et al., 2013, Journal of Hospital Medicine, 8, 42) rather than how SCD patients experience and understand their pain. However, the actual nature of pain experience in SCD is poorly understood and sub-optimally managed (Booker et al., 2006; Taylor et al., 2010, Journal of Pain and Symptom Management, 40, 416). What does this study add? The experience of SCD pain is indescribable without the use of analogy, as it is unbearable, agonising, constant, inescapable and without limit. Difficulty describing pain creates a perception of being misunderstood or minimized by professionals. Personification of pain is often employed by patients to attempt to form a relationship with pain. Current pain measures used in clinical practice are inadequate at capturing the acute and chronic SCD pain experience.
镰状细胞病（SCD）是英国最常见的血液疾病，会导致镰状红细胞阻塞小血管，引发急性和慢性疼痛。决定SCD患者生活质量的一个关键因素是疼痛性镰变发作的严重程度、发作时间和发作次数。然而，很少有研究关注疼痛的本质，因此人们对此了解甚少。本研究的目的是深入且有意义地阐述SCD疼痛的体验。
定性研究设计。
进行了七次面对面的半结构式访谈。访谈内容被转录，并采用解释现象学分析方法进行分析。
参与者描述了经历着难以想象、极度痛苦、持续不断、无法逃避且毫无尽头的疼痛，这种疼痛几乎无法描述；参与者借助类比和拟人化的方式来克服这一困难。参与者谈到了一个过程，最终他们觉得不得不接受自己的疾病，因为它无法治愈；但由于患有SCD，他们能够珍视生活并认识到积极的人生教训。
本研究表明，围绕类比展开的治疗工作有助于个体理解和表达他们的疼痛，并且目前测量疼痛的方法对SCD患者群体并无帮助。需要在更广泛的SCD患者群体中进行进一步研究，以推进这项定性研究的结果。
关于这个主题已知的内容有哪些？镰状细胞病（SCD）会对一个人的生活方方面面产生影响（爱德华兹等人，2005年，《国际行为医学杂志》，第12卷，第171页）。斯特里克兰、杰克逊、吉列德、麦圭尔和夸尔斯（2001年，《全国黑人护士协会杂志》，第12卷，第36页）指出，决定SCD患者生活质量的关键因素之一是疼痛性镰变发作的严重程度、发作时间和发作次数。疼痛加剧也被认为是SCD患者大多数就医情况的原因（麦克利什等人，2009年，《疼痛》，第145卷，第246页）。大多数研究关注的是疼痛在残疾方面的后果及其对情绪健康、人际关系以及药物/住院治疗需求的影响（布克等人，2006年，《慢性病》，第2卷，第39页；魏斯伯格等人，2013年，《医院医学杂志》，第8卷，第42页），而非SCD患者如何体验和理解他们的疼痛。然而，SCD疼痛体验的实际本质鲜为人知且管理欠佳（布克等人，2006年；泰勒等人，2010年，《疼痛与症状管理杂志》，第40卷，第416页）。本研究增加了什么内容？不使用类比就无法描述SCD疼痛的体验，因为它难以忍受、极度痛苦、持续不断、无法逃避且毫无尽头。难以描述疼痛会让人感觉被专业人员误解或轻视。患者常常采用将疼痛拟人化的方式来尝试与疼痛建立联系。临床实践中目前使用的疼痛测量方法不足以捕捉SCD患者急性和慢性疼痛的体验。
