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对多发性硬化症的心理社会调适:身份重新定义的探索。

Psychosocial adjustment to multiple sclerosis: exploration of identity redefinition.

作者信息

Irvine H, Davidson C, Hoy K, Lowe-Strong A

机构信息

School of Health Sciences, University of Ulster, Jordanstown, Newtownabbey, UK.

出版信息

Disabil Rehabil. 2009;31(8):599-606. doi: 10.1080/09638280802243286.

Abstract

PURPOSE

As multiple sclerosis (MS) often occurs in the prime of life and is unpredictable in nature, there is likely to be a strong psychological effect, with changes in values and beliefs and how the individual sees him or her self. This article presents the findings of a focus group study which aimed to explore the subjective experiences of living with, and adjusting to, MS.

METHOD

Seven individuals who had been diagnosed with MS for at least 5 years reflected on their reactions to being diagnosed, how they cope with the day to day challenges of the disease, and the changes that they have experienced. Data were transcribed verbatim and analysed using interpretative phenomenological analysis.

RESULTS

Diagnosis was met with negative reactions: denial, concealment and diminished confidence. However, the majority reported that, over time, there were positive changes in terms of their values and outlook. It would appear that the functional difficulties and psychological challenges, such as uncertainty and depression, are ameliorated to some extent by an increased appreciation for life and spirituality.

CONCLUSIONS

The findings provide insight into the psychological process of identity redefinition associated with adjusting to MS. Given this, interventions should target role/identity re-examination to assist individuals with MS in better managing the disease and enjoying life.

摘要

目的

由于多发性硬化症(MS)常发生在人生黄金时期且病情难以预测,其很可能会产生强烈的心理影响,包括价值观、信念以及个体对自我认知的改变。本文介绍了一项焦点小组研究的结果,该研究旨在探索与MS共处及适应MS的主观体验。

方法

七名被诊断患有MS至少5年的个体反思了他们对诊断结果的反应、应对疾病日常挑战的方式以及他们所经历的变化。数据被逐字转录,并采用解释现象学分析方法进行分析。

结果

诊断结果引发了负面反应:否认、隐瞒和信心下降。然而,大多数人报告称,随着时间的推移,他们的价值观和人生观出现了积极变化。看起来,对生活和精神层面的更多感悟在一定程度上缓解了功能困难和心理挑战,如不确定性和抑郁情绪。

结论

这些发现为与适应MS相关的身份重新定义的心理过程提供了见解。鉴于此,干预措施应针对角色/身份重新审视,以帮助MS患者更好地应对疾病并享受生活。

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