Koffman Jonathan, Goddard Cassie, Gao Wei, Jackson Diana, Shaw Pauline, Burman Rachel, Higginson Irene J, Silber Eli
King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK.
Department of Neurology, King's College Hospital NHS Foundation Trust, SE5 9RS, London, UK.
BMC Palliat Care. 2015 Apr 19;14:13. doi: 10.1186/s12904-015-0017-z.
Illness attributions, particularly for those living with life limiting illnesses, are associated with emotional adjustment or psychological distress. Few studies have examined attributions among people severely affected by multiple sclerosis (PwMS), and specifically among from diverse communities. This study aimed to explore and compare the presence and construction of meanings among Black Caribbean and White British PwMS.
Cross sectional qualitative interviews were conducted among Black Caribbean (BC) and White British (WB) PwMS with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach.
15 BC and 15 WB PwMS were interviewed. Attributions were complex with most PwMS reporting multiple explanations. Uncertainty, represents the first theme surrounding the aetiology of MS where participants constantly rehearsed the "why me?" question in relation to their illness, a number expressing considerable frustration. The second theme, 'logical and scientific', was voiced more often by WB PwMS and accounts for a range of genetic/viral influences, stress, environmental and lifestyle factors. Third, the 'supernatural' illness attribution theme departs from a biomedical perspective and was reported often among BC PwMS. This theme included the sub-categories of tests of faith and divine punishment, a view although exclusive to BC participants but was sometimes in conflict with notions of modernity.
Our findings identify evidence of cross-cultural and intra-group diversity in relation to MS causation. A greater professional awareness of the processes used by PwMS from diverse communities to make sense of their situation will enable health care professionals to facilitate effective support for those in their care and channel relevant psychosocial resources to them. This requires heightened skills in communication and cultural competency.
疾病归因，尤其是对于患有危及生命疾病的人来说，与情绪调节或心理困扰有关。很少有研究调查多发性硬化症重度患者（PwMS）的归因情况，特别是来自不同社区的患者。本研究旨在探索和比较加勒比黑人与英国白人PwMS患者对疾病意义的认知及其构建方式。
对扩展残疾状态量表（EDSS）≥6.0（严重疾病）的加勒比黑人（BC）和英国白人（WB）PwMS患者进行横断面定性访谈。采用框架法对数据进行分析。
共访谈了15名BC和15名WB PwMS患者。归因情况复杂，大多数PwMS患者报告了多种解释。不确定性是围绕MS病因的第一个主题，参与者不断思考“为什么是我？”这个与疾病相关的问题，许多人表达了相当大的沮丧情绪。第二个主题“逻辑与科学”，更多地由WB PwMS患者提及，涉及一系列遗传/病毒影响、压力、环境和生活方式因素。第三，“超自然”疾病归因主题与生物医学观点不同，在BC PwMS患者中经常被提及。这个主题包括信仰考验和神罚等子类别，这种观点虽然是BC参与者所特有的，但有时与现代观念相冲突。
我们的研究结果表明，在MS病因方面存在跨文化和群体内部的多样性。医疗保健专业人员若能更深入了解不同社区的PwMS患者理解自身状况的过程，将有助于为他们所护理的患者提供有效的支持，并为他们提供相关的心理社会资源。这需要提高沟通技巧和文化能力。
