Bregman A M
Soc Work Health Care. 1980 Summer;5(4):387-408. doi: 10.1300/J010v05n04_05.
This investigation is an exploratory study of parental management of progressive childhood neuromuscular disease. It focuses on parents for their significance as the primary managers of their children's diseases. The study, through its fieldwork component for the collection of data, utilizes participant observation. The researcher lived with each of six families for four days and nights to learn of the main concerns of parents with children who have Duchenne muscular dystrophy and Werdnig-Hoffmann disease, and the ways in which the parents manage these concerns. General patterns of positive parental management are defined and are followed by descriptions, in functional terms, of some of the strategies that parents employ to carry out these patterns.
本调查是一项关于父母对儿童进行性神经肌肉疾病管理的探索性研究。它聚焦于父母，因为他们作为孩子疾病的主要管理者具有重要意义。该研究通过实地调查部分来收集数据，采用参与观察法。研究人员与六个家庭中的每一个家庭共同生活四个昼夜，以了解患有杜氏肌营养不良症和韦尼克 - 霍夫曼病患儿的父母的主要担忧，以及父母处理这些担忧的方式。定义了积极父母管理的一般模式，随后从功能角度描述了父母为实施这些模式所采用的一些策略。
