Is my sick child healthy? Is my healthy child sick?: Changing parental experiences of cystic fibrosis in the age of expanded newborn screening
Is my sick child healthy? Is my healthy child sick?: Changing parental experiences of cystic fibrosis in the age of expanded newborn screening
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DOI：
10.1016/j.socscimed.2008.06.003
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发表时间：
2008-10-01
影响因子：
5.4
通讯作者：
Grob, Rachel
中科院分区：
文献类型：
--
作者：
Grob, Rachel
本文探讨了如何快速增长，在美国的强制性新生儿筛查（NBS）导致囊性纤维化的诊断正在改变，为受影响的家庭，他们的疾病与疾病的经验。比较新生儿筛查和症状后诊断经验的定性研究表明，通过新生儿筛查进行疾病诊断会产生许多强有力的后果。这种早期的、未经寻求的诊断深深地影响了父母对照顾新生儿的能力的感觉以及他们对孩子是谁的感觉，并将疾病-而不是爱上"新生儿"的过程-置于孩子最初几周和几个月的中心地位;并使卫生专业人员在这个形成时期的家庭生活中显得非常重要。随着新生儿遗传筛查在美国继续迅速扩大，用于一系列可能不会立即出现症状的其他疾病，我们可以预期，新生儿时期将以这些方式显着改变，以适应越来越多的人群。(C)2008爱思唯尔有限公司保留所有权利。
This paper explores how rapid growth in the USA of mandatory newborn screening (NBS) leading to a diagnosis of cystic fibrosis is changing, for affected families, their experience of illness versus disease. Qualitative research comparing newborn screening and post-symptomatic diagnostic experiences suggests a number of potent consequences associated with affixing a disease diagnosis through newborn screening. The early, unsought diagnosis deeply affects parents' feeling of competence to care for their newborn and their sense of who the child is, and places the disease - rather than the process of-falling in love with" the new baby - at centre stage during the child's early weeks and months; and causes health professionals to loom very large in the family's life at this formative time. With newborn genetic screening continuing to expand rapidly in the USA for a range of other conditions that may not be immediately symptomatic, we can expect that the newborn period will be significantly altered in these ways for a growing segment of the population. (C) 2008 Elsevier Ltd. All rights reserved.