Maestro-Gonzalez Alba, Bilbao-Leon M Cruz, Zuazua-Rico David, Fernandez-Carreira Jose M, Baldonedo-Cernuda Ricardo F, Mosteiro-Diaz M Pilar
Department of Medicine, Nursing Area, University of Oviedo, Oviedo, Spain.
Hospital Universitario Central de Asturias, Oviedo, Spain.
PLoS One. 2018 Feb 5;13(2):e0191960. doi: 10.1371/journal.pone.0191960. eCollection 2018.
We explored the quality of life of adults with cerebral palsy without an intellectual disability and the predictors of quality of life.
Because cerebral palsy is a disease that manifests in childhood, much of the research into quality of life for those dealing with it focuses on children; there are few studies that evaluate the quality of life of adults with cerebral palsy. Therefore, it is important to consider their perceptions in order to improve their general wellbeing and self-determination.
This was a descriptive, cross-sectional study.
Quality of life was measured using the GENCAT Quality of Life Scale. Demographic and personal variables were also collected and examined. Participants comprised 75 adults (58.7 percent men, mean age = 40.84 years) with cerebral palsy who were members of the National Cerebral Palsy Association of Spain between 2014 and 2015. A linear multivariate model was examined as well.
The overall mean score indicator of participants' quality of life was 103.29, which corresponds to the 56.6th percentile on the GENCAT scale. Examining the level of qualification, we found significant differences in the factors "personal development" and "self-determination," and those with a university education obtained higher scores than their less-educated counterparts. Having a partner was related to higher quality of life standard scores. After constructing a linear model, it was observed that maintaining sexual relationships was another factor that increased participants' quality of life.
This study highlights the importance of social and romantic relationships to achieve a better quality of life in adults with cerebral palsy who do not have an intellectual disability. Social integration and sexuality education programs should be developed to improve their quality of life.
我们探讨了无智力障碍的成年脑瘫患者的生活质量及其生活质量的预测因素。
由于脑瘫是一种在儿童期表现出来的疾病,因此针对脑瘫患者生活质量的研究大多集中在儿童身上;很少有研究评估成年脑瘫患者的生活质量。因此,考虑他们的看法对于改善他们的总体幸福感和自主决定权很重要。
这是一项描述性横断面研究。
使用GENCAT生活质量量表测量生活质量。还收集并检查了人口统计学和个人变量。参与者包括75名成年脑瘫患者(男性占58.7%,平均年龄 = 40.84岁),他们在2014年至2015年期间是西班牙全国脑瘫协会的成员。还检验了线性多变量模型。
参与者生活质量的总体平均得分指标为103.29,这对应于GENCAT量表上的第56.6百分位。在考察学历水平时,我们发现“个人发展”和“自主决定权”因素存在显著差异,受过大学教育的人比受教育程度较低的人得分更高。有伴侣与更高的生活质量标准得分相关。构建线性模型后,观察到维持性关系是提高参与者生活质量的另一个因素。
本研究强调了社会和浪漫关系对于提高无智力障碍的成年脑瘫患者生活质量的重要性。应制定社会融合和性教育计划以改善他们的生活质量。