Lassetter Jane H, Mandleco Barbara L, Roper Susanne Olsen
Brigham Young University, Provo, Utah, USA.
Qual Health Res. 2007 Apr;17(4):456-67. doi: 10.1177/1049732306298804.
The purpose of this qualitative, descriptive study was to capture the everyday lives of parents raising a child with a disability. Fifteen parental dyads raising a child with Down syndrome, developmental disabilities, visual impairments, or speech disorders used a disposable camera to photograph images important to them. Interviews about these photographs reflected everyday life. Four themes emerged from content analysis of the photos: active activities, quiet activities, activities of daily living, and care of the child with a disability. Six themes emerged when discussing photographs participants would have liked to take but did not. These themes were acceptance, concern for the future, joys, struggles, balance of good and bad times, and normalcy. Findings support the usefulness of photography as a method of obtaining information from parents raising a child with a disability through qualitative means and provide nurses with a beginning understanding of these parents' lives.
这项定性描述性研究的目的是了解抚养残疾儿童的父母的日常生活。十五对抚养患有唐氏综合征、发育障碍、视力障碍或言语障碍孩子的父母使用一次性相机拍摄对他们来说重要的照片。关于这些照片的访谈反映了日常生活。对照片的内容分析产生了四个主题：积极活动、安静活动、日常生活活动以及对残疾儿童的照料。在讨论参与者本想拍摄但未拍摄的照片时出现了六个主题。这些主题是接纳、对未来的担忧、喜悦、挣扎、好坏时光的平衡以及常态。研究结果支持了摄影作为一种通过定性方法从抚养残疾儿童的父母那里获取信息的方法的有用性，并让护士对这些父母的生活有了初步了解。
