Beit Issie Shapiro, Ra'anana, Israel.
J Intellect Disabil Res. 2011 Dec;55(12):1176-84. doi: 10.1111/j.1365-2788.2011.01475.x. Epub 2011 Sep 29.
The purpose of this study is to describe and analyse the quality of life of Israeli families raising a child with a disability while challenged with all the usual demands of family life.
Respondents were main caregivers of 103 children with disability receiving services at Beit Issie Shapiro, a service agency in Israel. The respondents completed the Family Quality of Life Survey-2006 which operationalises family quality of life (FQOL) as a construct in nine domains of family life.
The findings show an underlying pattern within the domains that define FQOL. In general, the findings indicate that the families are strongly challenged to meet the needs of a special child and raise a family meeting the needs of all its members. The respondents report that, within the limits of available opportunities, they had achieved well and they are satisfied with their attainment. In general, our findings seem to reflect in our respondents a sense of resilience and an ability to manage family challenges to achieve a reasonably high FQOL. Domains described as internal to the family were rated highly in terms of FQOL as compared to domains external to the family.
The Family Quality of Life Survey-2006 was found to be a valuable tool for identifying and evaluating factors that enhance FQOL. Further research is needed to develop application models for integrating this instrument into the agency's service and evaluation repertoire.
本研究旨在描述和分析以色列家庭在面临家庭生活的所有常规需求的同时，抚养残疾儿童的生活质量。
受访者是在以色列服务机构 Beit Issie Shapiro 接受服务的 103 名残疾儿童的主要照顾者。受访者完成了家庭生活质量调查-2006，该调查将家庭生活质量（FQOL）作为家庭生活九个领域的一个结构来运作。
研究结果显示了定义 FQOL 的各个领域中的潜在模式。总体而言，研究结果表明，这些家庭面临着巨大的挑战，需要满足特殊儿童的需求，并满足其所有成员的家庭需求。受访者报告说，在现有机会的限制内，他们取得了很好的成绩，并对自己的成就感到满意。总的来说，我们的研究结果似乎反映了我们的受访者具有适应能力和管理家庭挑战的能力，以实现相当高的 FQOL。与家庭外部的领域相比，被描述为家庭内部的领域在 FQOL 方面的评分较高。
发现家庭生活质量调查-2006 是一种识别和评估增强 FQOL 的因素的有价值的工具。需要进一步的研究来开发将该工具整合到机构服务和评估组合中的应用模型。
