Acceptance of disability and sense of coherence in individuals with Ehlers-Danlos syndrome
Acceptance of disability and sense of coherence in individuals with Ehlers-Danlos syndrome
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DOI：
10.1046/j.1365-2702.2003.00776.x
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发表时间：
2003-09-01
影响因子：
4.2
通讯作者：
Nordström, G
中科院分区：
文献类型：
--
作者：
Berglund, B;Mattiasson, AC;Nordström, G
ehers - danlos综合征（EDS）是一种较为罕见的遗传性结缔组织疾病，皮肤过伸性、关节过度活动、慢性关节和肢体疼痛、血管和组织易损是常见症状。本研究的目的是描述EDS患者接受和应对与该综合征相关的感知限制的程度，并确定接受残疾（AD）、连贯感（SOC）、功能健康状况与背景数据之间的关系。邮寄了四份问卷：AD量表修改（ADM）、SOC量表、疾病影响概况（SIP）和背景表格。EDS的受访者是通过瑞典EDS国家协会招募的，回复率为74%（女性69人，男性8人）。哈丁格大学医院伦理委员会(参考编号：（152/95）批准了这项研究。本研究表明，EDS患者的AD和SOC水平与其他患者群体相似，例如造口术患者和糖尿病患者。此外，社会责任指数与一般人口的社会责任指数一致。那些全职工作的人比那些请病假或领取伤残抚恤金的人更能接受自己的残疾。多元回归分析显示，AD水平越高，SOC水平越高，功能健康状况越好。SOC和SIP合计占adm方差的50%。对于护理实践中的健康促进，了解可能影响EDS患者整体生活状况的问题区域是很重要的。护士的一个关键问题是识别对疾病接受度低和/或SOC低的个体，以支持这些人的适应过程。未来对EDS的研究可能会侧重于开发和实施模型的项目，以加强该群体的AD和SOC水平。
Ehlers-Danlos syndrome (EDS) is a relatively rare, inherited connective tissue disorder and skin hyperextensibility, joint hypermobility, chronic joint and limb pain, blood vessel and tissue fragility are frequent symptoms.The aims of this study were to describe the degree to which individuals with EDS accept and cope with perceived limitations related to the syndrome, and to determine the relationships between acceptance of disability (AD), sense of coherence (SOC), functional health status and background data.Four questionnaires were mailed: the AD scale Modified (ADM), the SOC Scale, the Sickness Impact Profile (SIP) and a background form. The respondents with EDS were recruited through the EDS National Association in Sweden and the response rate was 74% (69 females and eight males).The Ethical Committee at Huddinge University Hospital (ref. no. 152/95) approved the study.This study has shown that the level of AD and SOC in individuals with EDS is similar to other patient groups, e.g. individuals with ostomy and with diabetes. Further, the SOC was in concordance with that of the general population. Those working full-time accepted their disability to a greater degree than those on sick leave or disability pension. A multiple regression analysis showed that a greater AD was associated with a higher level of SOC and a better functional health status. The SOC and SIP together accounted for 50% of the variance in the ADM.For health promotion in nursing practice it is important to have insight into the problem areas which may influence the overall life situation for an individual with EDS. A key issue for nurses is to identify individuals with low acceptance of their disease and/or low SOC in order to support these persons' adaptation process. Future research on EDS may be directed towards projects focusing on the development and implementation of models to strengthen the level of AD and SOC in this group.