Garwick A W, Patterson J, Bennett F C, Blum R W
Division of General Pediatrics and Adolescent Health, University of Minnesota, Minneapolis, USA.
Arch Pediatr Adolesc Med. 1995 Sep;149(9):991-7. doi: 10.1001/archpedi.1995.02170220057008.
To develop recommendations for effectively informing families about their child's chronic illness or disability.
The sample included 43 families of infants with Down syndrome and/or congenital heart disease who were participating in Project Resilience, which is a multisite longitudinal research project. Family interviews were transcribed verbatim and coded by two raters. Qualitative techniques were used to identify the factors that influenced family caregivers' reactions to learning that their child had been diagnosed as having a chronic condition.
Family caregivers clearly distinguished their personal emotional reactions to the diagnosis from their reactions to how providers informed them about their child's condition. Families emphasized the quality of information that they received as well as the manner in which they were told about the condition. Although two thirds of the informing incidents were positive, families also reported negative reactions to outdated and inadequate information as well as to professionals who were insensitive to their needs.
Resident and continuing education programs need to prepare physicians who can sensitively and effectively "break the news" to diverse families who have children with chronic conditions. At the time of diagnosis, clinicians need to PACE the news by (1) planning the setting, (2) assessing the family's background knowledge and experience, (3) choosing strategies that best fit the family's particular situation, and (4) evaluating the family's understanding of the information.
制定相关建议，以便有效地让家庭了解其孩子的慢性疾病或残疾情况。
样本包括43个患有唐氏综合征和/或先天性心脏病婴儿的家庭，这些家庭参与了“复原力项目”，这是一个多地点纵向研究项目。家庭访谈内容逐字转录，并由两名评分者进行编码。采用定性技术来确定影响家庭照顾者对得知孩子被诊断患有慢性疾病的反应的因素。
家庭照顾者明确区分了他们对诊断的个人情绪反应和对医护人员告知孩子病情方式的反应。家庭强调了他们所获得信息的质量以及被告知病情的方式。尽管三分之二的告知事件是积极的，但家庭也报告了对过时和不充分信息以及对不敏感于他们需求的专业人员的负面反应。
住院医师和继续教育项目需要培养能够敏感且有效地向有慢性病孩子的不同家庭“告知坏消息”的医生。在诊断时，临床医生需要通过以下方式来安排告知过程：（1）规划告知场景；（2）评估家庭的背景知识和经验；（3）选择最适合家庭具体情况的策略；（4）评估家庭对信息的理解。
