Al-Gamal Ekhlas, Long Tony
Faculty of Nursing, The University of Jordan, Amman, Jordan.
Scand J Caring Sci. 2013 Sep;27(3):624-31. doi: 10.1111/j.1471-6712.2012.01071.x. Epub 2012 Aug 24.
Cerebral palsy, with a prevalence in Europe of 2-2.5 per 1000 live births, is the most common severe physical disability affecting children. While many parents have positive perceptions of their disabled children, caring for a child with disability can be exhausting and stressful, and social support is an important coping resource. There is little evidence about how having a child with cerebral palsy affects Jordanian parents.
The purpose of this study was to provide insight into the psychological distress and perceived support among Jordanian parents living with a child with cerebral palsy.
In 2010, a cross-sectional, descriptive, correlational design was used with a nonprobability sample of 204 Jordanian parents. Both mothers and fathers, interviewed individually rather than in pairs, were recruited from health care centres that provided comprehensive care for children with cerebral palsy in Jordan and from designated schools for special education. The Gross Motor Function Classification System, the Perceived Stress Scale (PSS), the Beck Depression Inventory, the Strengths and Difficulties Questionnaire and the Multidimensional Scale of Perceived Social Support (MSPSS) were administered to parents. Descriptive statistical analysis was applied. Bivariate correlation analysis was undertaken to examine the relationship between variables.
More than 60% of parents often felt nervous and stressed. The mean score on the PSS was 27.0 (SD=9.33), and the mean score on the MSPSS was 58.9 (SD=15.1). Severe disability in the child was associated with high mental distress in the parent and linked to low support from friends. There was a significant negative correlation between parental stress, depression and social support. Parents with the most psychological distress were the least well supported.
This study has implications for health professionals in terms of developing strategies for reducing parental stress. There are implications for policy to provide support for parents and to develop family-centred services. The findings will inform an intervention study to investigate multi-professional support.
脑瘫是影响儿童的最常见的严重身体残疾，在欧洲的患病率为每1000例活产中有2至2.5例。虽然许多父母对他们残疾的孩子有积极的看法，但照顾残疾儿童可能会让人疲惫不堪且压力巨大，而社会支持是一种重要的应对资源。关于孩子患有脑瘫如何影响约旦父母，几乎没有相关证据。
本研究的目的是深入了解患有脑瘫孩子的约旦父母的心理困扰和感知到的支持。
2010年，采用横断面、描述性、相关性设计，对204名约旦父母的非概率样本进行研究。父母双方分别接受访谈，而非成对访谈，他们是从约旦为脑瘫儿童提供综合护理的医疗保健中心以及指定的特殊教育学校招募而来。向父母发放了粗大运动功能分类系统、感知压力量表（PSS）、贝克抑郁量表、长处与困难问卷以及多维感知社会支持量表（MSPSS）。进行了描述性统计分析。采用双变量相关分析来检验变量之间的关系。
超过60%的父母经常感到紧张和有压力。PSS的平均得分是27.0（标准差=9.33），MSPSS的平均得分是58.9（标准差=15.1）。孩子的严重残疾与父母的高度心理困扰相关，且与朋友的低支持度有关。父母的压力、抑郁与社会支持之间存在显著的负相关。心理困扰最大的父母得到的支持最少。
本研究对卫生专业人员制定减轻父母压力的策略具有启示意义。对政策制定也有启示，即要为父母提供支持并发展以家庭为中心的服务。研究结果将为一项调查多专业支持的干预研究提供参考。
