Boehm Thomas L, Carter Erik W, Taylor Julie Lounds
Am J Intellect Dev Disabil. 2015 Sep;120(5):395-411. doi: 10.1352/1944-7558-120.5.395.
Recognizing the prominent role of parents in supporting their children with intellectual and developmental disabilities (IDD), improving quality of life for these families is an essential endeavor. While much attention has focused on the experiences of families with younger children with IDD, little is known about the family quality of life (FQOL) among families with transition-age youth and young adults. We examined the FQOL ratings of 425 parents with a child between 13-21 years of age with intellectual disability or autism to understand FQOL and the factors that may shape it. Overall satisfaction with FQOL was somewhat high for this sample, with some variability across domains. Higher FQOL ratings were predicted by lower frequency of challenging behaviors, lower support needs, and higher strength of parental religious faith. We present recommendations for research and practice focused on promoting quality of life during the transition period.
认识到父母在支持其患有智力和发育障碍（IDD）的子女方面所起的重要作用，改善这些家庭的生活质量是一项至关重要的工作。虽然很多注意力都集中在有年幼IDD子女的家庭的经历上，但对于有过渡年龄青少年和年轻成年人的家庭的家庭生活质量（FQOL）却知之甚少。我们调查了425名有一名13至21岁患有智力残疾或自闭症子女的父母的FQOL评分，以了解FQOL及其可能形成的因素。该样本对FQOL的总体满意度较高，但各领域存在一定差异。具有挑战性的行为频率较低、支持需求较低以及父母宗教信仰强度较高预示着更高的FQOL评分。我们提出了专注于在过渡时期提高生活质量的研究和实践建议。
