Mixed messages: presentation of information in cystic fibrosis-screening pamphlets.
Mixed messages: presentation of information in cystic fibrosis-screening pamphlets.
复制标题
DOI：
10.1086/302036
复制
发表时间：
1998-10
影响因子：
9.8
通讯作者：
Greg L. Loeben;Theresa M. Marteau;Benjamin S. Wilfond
中科院分区：
文献类型：
--
作者：
Greg L. Loeben;Theresa M. Marteau;Benjamin S. Wilfond
书面小册子是个人决定是否接受囊性纤维化(CF)携带者检测的重要信息来源。对诊断为CF的胎儿的病情和生殖选择有充分的了解，这对明智的决策至关重要。评估了美国和英国针对产前和其他人群的商业和非商业组织提供的关于携带者检测的28本小册子中提供的关于CF和生殖选择的信息。所提供的信息数量范围为1-37个句子(中位数6.5)，大多数是相对中性的，少数传达积极或消极的形象。积极的句子在英国、美国的商业和产前小册子中不太常见。关于预期寿命的说法也有很大不同，无论是提供的年龄还是传达的乐观程度。此外，这些小册子在诊断出胎儿患有CF后提供了关于生殖选择的信息的数量各不相同。只有15本小册子提到堕胎，英国比美国更多地提到堕胎，非商业性组织的小册子比商业组织的小册子更频繁。对生殖健康和生殖选择的描述差异很大，这引起了人们对任何一本小册子可以在多大程度上提供平衡的信息的关切。关于在教育材料中包括哪些信息的选择，需要根据打算发送的信息明确考虑。
Written pamphlets are an important source of information for individuals deciding whether to undergo carrier testing for cystic fibrosis (CF). Adequate understanding of the condition and reproductive options following the diagnosis of a fetus with CF are critical to informed decision making. The information given about CF and reproductive options in 28 pamphlets about carrier testing, from commercial and noncommercial organizations in the United States and the United Kingdom, aimed at prenatal and other populations, was assessed. The amount of information provided about CF showed a range of 1-37 sentences (median 6.5), with most being relatively neutral and with a minority conveying a positive or a negative image. Positive sentences were less common in British, U.S. commercial, and prenatal pamphlets. Statements about life expectancy also varied considerably, both in the ages provided and in the degree of optimism conveyed. In addition, the pamphlets varied in the amount of information they provided about reproductive options following the diagnosis of a fetus with CF. Abortion was mentioned in just 15 pamphlets, more often in the United Kingdom than in the United States and more frequently in pamphlets from noncommercial than in those from commercial organizations. Wide variation in the descriptions of CF and the reproductive options presented raises concerns about the extent to which any one pamphlet may present balanced information. The choices about what information to include in educational materials need to be explicitly considered on the basis of the message intended to be sent.