Acceptance of disability and sense of coherence in individuals with Ehlers-Danlos syndrome

被引:20
作者
Berglund, B [1 ]
Mattiasson, AC
Nordström, G
机构
[1] Karolinska Inst, Dept Nursing, SE-14183 Huddinge, Sweden
[2] HM Queen Sophia Univ Coll Nursing, Stockholm, Sweden
[3] Karolinska Inst, Danderyd Hosp, Dept Clin Neurosci Occupat Therapy & Elderly Care, Div Geriatr Med, Stockholm, Sweden
[4] Karolinska Inst, Danderyd Hosp, Div Surg, Stockholm, Sweden
[5] Huddinge Univ Hosp, Dept Nursing Care Res & Dev, Stockholm, Sweden
关键词
acceptance of disability; coping; Ehlers-Danlos syndrome; sense of coherence scale; sickness impact profile;
D O I
10.1046/j.1365-2702.2003.00776.x
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
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.
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页码:770 / 777
页数:8
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