Gallo Agatha M, Angst Denise B, Knafl Kathleen A, Twomey John G, Hadley Emily
University of Illinois at Chicago, College of Nursing (M/C 802), Women, Children and Family Health Science, 845 South Damen Avenue, Chicago, IL 60612, USA.
J Genet Couns. 2010 Jun;19(3):296-304. doi: 10.1007/s10897-010-9286-0. Epub 2010 Mar 31.
The purpose of this study was to examine health care professionals' views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals' semi-structured interviews. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research.
本研究的目的是考察医疗保健专业人员对于为患有遗传疾病儿童的家庭提供个性化信息共享的观点和策略。样本包括来自中西部一个大城市大都市区三个临床地点的37名医疗专业人员。采用定性内容主题分析来分析医疗专业人员半结构化访谈的数据。四个主题体现了医疗保健专业人员围绕信息管理与家庭开展工作的方式：与父母共享信息、考虑父母偏好、对病情的理解以及帮助父母告知他人。这些发现有助于理解医疗专业人员在与患有遗传疾病儿童的父母共享信息时所采用的流程，为临床实践、专业培训和未来研究提供了指导。
