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患有脊柱裂的年轻人的生活满意度。

Life satisfaction of young adults with spina bifida.

作者信息

Barf H A, Post M W M, Verhoef M, Jennekens-Schinkel A, Gooskens R H J M, Prevo A J H

机构信息

Rudolf Magnus Institute of Neuroscience, University Medical Centre Utrecht, Utrecht, The Netherlands.

出版信息

Dev Med Child Neurol. 2007 Jun;49(6):458-63. doi: 10.1111/j.1469-8749.2007.00458.x.

Abstract

This study concerns life satisfaction and its determinants in Dutch young adults with spina bifida (SB). Data on life satisfaction (Life Satisfaction Questionnaire [LiSat-9]) were related to hydrocephalus, lesion level, disabilities, and demographic variables. In total, 179 young adults with SB participated (41% male, age range 16-25y; 79% SB aperta, 67% hydrocephalus [HC], 39% wheelchair-dependent). Most were satisfied with their life as a whole (24% dissatisfied). No difference was found from a population reference group (28% dissatisfied). Highest proportions of dissatisfaction were found for financial situation (44%), partnership relations (49%), and sex life (55%). Least dissatisfaction was found for contact with friends (17%) and families (15%). Young adults with SB and HC were more satisfied with their financial situation and family life but were less satisfied with self-care ability and partnership relations than those without HC and the reference group. However, except for self-care ability, relationships between life satisfaction and having SB were weak. In conclusion, self-care ability and partnership relations were rated least favourable and may need more attention from care providers. Overall, SB does not seem to be an important determinant of life satisfaction.

摘要

本研究关注荷兰患有脊柱裂(SB)的年轻成年人的生活满意度及其决定因素。生活满意度数据(生活满意度问卷[LiSat-9])与脑积水、病变水平、残疾情况及人口统计学变量相关。共有179名患有脊柱裂的年轻成年人参与研究(41%为男性,年龄范围16 - 25岁;79%为开放性脊柱裂,67%患有脑积水[HC],39%依赖轮椅)。大多数人对自己的整体生活感到满意(24%不满意)。与总体参照组相比未发现差异(28%不满意)。对财务状况(44%)、伴侣关系(49%)和性生活(55%)不满意的比例最高。对与朋友(17%)和家人(15%)的联系不满意的比例最低。与没有脑积水和参照组的人相比,患有脊柱裂和脑积水的年轻成年人对自己的财务状况和家庭生活更满意,但对自我护理能力和伴侣关系不太满意。然而,除自我护理能力外,生活满意度与患有脊柱裂之间的关系较弱。总之,自我护理能力和伴侣关系的评价最低,可能需要护理提供者给予更多关注。总体而言,脊柱裂似乎不是生活满意度的重要决定因素。

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