School of Physical Therapy, The University of Western Ontario, 1588 Elborn College, London, Ontario, Canada.
Phys Occup Ther Pediatr. 2011 May;31(2):169-83. doi: 10.3109/01942638.2010.540311. Epub 2010 Dec 29.
In this study we investigated experiences of parents of children with cerebral palsy (CP) to identify areas in which health care providers and educators could improve practice. A second objective was to create educational material for parents of young children newly diagnosed with CP. A purposive sample of nine parents, who previously participated in the Adolescent Study of Quality of Life, Mobility, and Exercise, was recruited through phone. During an interview, parents reflected on the experience of raising a child with CP from birth to young adulthood. These interviews were audiotaped, transcribed, and coded using the International Classification of Functioning, Disability and Health-informed model and analyzed to identify major themes. Parents elaborated upon what was helpful and what could be changed to improve their children's and families' experiences through supports, advocacy, and education at different levels. The results informed the development of tips for parents and children with CP to enhance their families' experiences and interactions with health care providers, educators, and others.
在这项研究中，我们调查了脑瘫（CP）儿童家长的经历，以确定医疗保健提供者和教育工作者可以改进实践的领域。第二个目标是为新诊断出患有 CP 的幼儿家长制作教育材料。通过电话从之前参加青少年生活质量、移动性和运动研究的 9 名家长中抽取了一个有目的的样本。在一次访谈中，家长们从孩子出生到成年早期回顾了抚养脑瘫儿童的经历。这些访谈被录音、转录并使用功能、残疾和健康国际分类模型进行编码，并进行分析以确定主要主题。家长们详细阐述了在支持、倡导和教育方面，可以改进哪些方面，以改善他们孩子和家庭的体验。研究结果为父母和脑瘫儿童提供了一些建议，以增强他们家庭的体验，并改善他们与医疗保健提供者、教育工作者和其他人的互动。
