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遗传性出血性毛细血管扩张症患者的生活:应对方式和心理困扰——一项横断面研究。

Living with hereditary haemorrhagic telangiectasia: coping and psychological distress - a cross-sectional study.

机构信息

Faculty of Social Sciences, Oslo and Akershus University College of Applied Sciences, Oslo, Norway.

出版信息

Disabil Rehabil. 2013 Feb;35(3):206-13. doi: 10.3109/09638288.2012.690500. Epub 2012 Jun 7.

Abstract

PURPOSE

The purpose of this study was to examine the relationship between coping strategies measured by Coping Orientation to Problems Experienced Scale (COPE) and psychological distress measured by Hospital Anxiety and Depression Scale (HADS) and Becks Hopelessness Scale (BHS) in individuals living with Hereditary hemorrhagic telangiectasia (HHT) and to examine if coping strategies might have a mediating role between experienced illness and psychological distress. HHT is mainly caused by mutations in the ENG- or ALK1-genes and associated with a shorter life span. 90% of patients have recurrent nosebleeds.

METHOD

66 individuals affected of HHT participated in this cross-sectional study, completing questions due to demographic variables, Experience of illness, COPE, BHS and HADS. X(2) test, bivariate correlations with Pearson r and hierarchical multiple regression were used using PASW 18.

RESULTS

Experience of illness made the highest variance in anxiety, depression and hopelessness and the coping strategy "behavioral disengagement" seems to have a mediating role between nose bleedings, being afraid of complications, satisfied with life and psychological distress.

CONCLUSIONS

Experience of illness is of big importance in psychological distress in individuals affected of HHT, and behavioral disengagement explained the actual relationship between experience of illness and psychological distress.

摘要

目的

本研究旨在探讨通过经验量表(COPE)测量的应对策略与医院焦虑抑郁量表(HADS)和贝克绝望量表(BHS)测量的心理困扰之间的关系,并研究应对策略是否在遗传性出血性毛细血管扩张症(HHT)患者的疾病体验与心理困扰之间具有中介作用。HHT 主要由 ENG-或 ALK1-基因突变引起,与寿命缩短有关。90%的患者有反复发作的鼻出血。

方法

本横断面研究共纳入 66 名 HHT 患者,完成人口统计学变量、疾病体验、COPE、BHS 和 HADS 问卷。使用 PASW 18 进行卡方检验、Pearson r 进行双变量相关性分析和分层多元回归分析。

结果

疾病体验对焦虑、抑郁和绝望的方差贡献最大,“行为脱离”应对策略似乎在鼻出血、害怕并发症、对生活满意和心理困扰之间具有中介作用。

结论

疾病体验对 HHT 患者的心理困扰具有重要意义,行为脱离解释了疾病体验与心理困扰之间的实际关系。

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