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重症肌无力成年患者的希望、应对方式与生活质量

Hope, Coping, and Quality of Life in Adults with Myasthenia Gravis.

作者信息

Koopman Wilma J, LeBlanc Nicole, Fowler Sue, Nicolle Michael W, Hulley Denise

出版信息

Can J Neurosci Nurs. 2016;38(1):56-64.

Abstract

UNLABELLED

Myasthenia gravis significantly impacts quality of life. However, the relationship between hope, coping, and quality of life (QOL)in myasthenia patients has not been studied (Kulkantrakorn & Jarungkiatkul, 2009; Raggi et al., 2010).

OBJECTIVE

The aim of this study was to explore the relationship between hope, coping, and quality of life in adults with myasthenia gravis.

DATA COLLECTION

Subjects with MG (n = 100) completed six questionnaires, including a demographic profile, the Myasthenia Gravis Activities of Daily Living Scale (MG-ADL), Herth Hope Index (HHI), Jalowiec Coping Scale (JCS), Myasthenia Gravis Quality-of-Life Scale (MG-QOL15), and Short Form Health Survey (SF-36v2).

RESULTS

Mean hope scores indicated a high level of hope. An optimistic coping style was the most common and effective coping strategy identified by subjects. Positive thinking and humour were also frequently used strategies. Participants identified quality of life as good tolerability, above general population mental well-being, and below general populationphysical well-being. Participants who identified good quality of life had low scores on the MG-QOL15 scale and high scores on the SF36v2. Hope and independence for activities of daily living were found to correlate with improved quality of life and mental well-being(p < 0.001). Age and length of illness were not significant factors. There was no mediation by well-being or quality of life in the relationship between hope and coping. Hope and coping were not important factors for well-being or quality of life.

CONCLUSION

Nurses caring for adults with myasthenia gravis should use interventions that continue to support hope, quality of life, and coping throughout the unpredictable and chronic course of MG.

摘要

未标注

重症肌无力严重影响生活质量。然而,重症肌无力患者的希望、应对方式与生活质量(QOL)之间的关系尚未得到研究(Kulkantrakorn和Jarungkiatkul,2009年;Raggi等人,2010年)。

目的

本研究旨在探讨重症肌无力成年患者的希望、应对方式与生活质量之间的关系。

数据收集

100名重症肌无力患者完成了六份问卷,包括人口统计学资料、重症肌无力日常生活活动量表(MG-ADL)、赫思希望指数(HHI)、贾洛维茨应对量表(JCS)、重症肌无力生活质量量表(MG-QOL15)和简短健康调查问卷(SF-36v2)。

结果

平均希望得分表明患者抱有较高水平的希望。乐观的应对方式是患者确定的最常见且有效的应对策略。积极思考和幽默也是常用策略。参与者认为生活质量的特点是耐受性良好、高于一般人群的心理健康水平且低于一般人群的身体健康水平。认为生活质量良好的参与者在MG-QOL15量表上得分较低,而在SF36v2量表上得分较高。发现希望和日常生活活动的独立性与生活质量和心理健康的改善相关(p<0.001)。年龄和患病时长不是显著因素。在希望与应对方式的关系中,幸福感或生活质量未起到中介作用。希望和应对方式对幸福感或生活质量而言并非重要因素。

结论

护理重症肌无力成年患者的护士应采用干预措施,在重症肌无力不可预测的慢性病程中持续支持患者的希望、生活质量和应对方式。

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