走进未知:多发性硬化症患者的经历。

S. Barker-Collo, C. Cartwright, J. Read
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引用次数: 32

摘要

这篇文章检查了16个被诊断为多发性硬化症(MS)的人的叙述。在诊断之前,参与者经历了不同的和短暂的症状。诊断本身涉及大量的测试和健康从业人员,对诊断的不同反应,无法吸收有关疾病的信息,以及将MS视为两害相权取其轻的观点。在诊断后,参与者立即透露了对疾病不可预测进展的担忧。患者的叙述反映了慢性病患者生活的消极和积极方面,如角色转换、歧视、重新评估优先事项、对家庭的再投资以及积极的生活方式改变。叙事的各个方面都揭示了对未知事物的恐惧和焦虑。
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Into the unknown: the experiences of individuals living with multiple sclerosis.
This article examines the narratives of 16 individuals diagnosed with multiple sclerosis (MS). Before diagnosis, the participants had experienced disparate and transient symptoms. Diagnosis itself involved numerous tests and health practitioners, varied responses to the diagnosis, an inability to assimilate information about the disease, and a view of MS as being the lesser of two evils. Immediately after diagnosis, participants revealed concerns about the unpredictable progression of the disease. Patient narratives reflected both negative and positive aspects of living with a chronic illness, such as shifting roles, discrimination, reevaluation of priorities, reinvestment in the family, and positive lifestyle changes. All aspects of the narratives revealed fear and anxiety in relation to the unknown.
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