"It was an overwhelming thing": parents' needs after infant diagnosis with congenital adrenal hyperplasia.

"It was an overwhelming thing": parents' needs after infant diagnosis with congenital adrenal hyperplasia.
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DOI:
10.1016/j.pedn.2014.01.007
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发表时间:
2014-09
影响因子:
2.4
通讯作者:
Sandberg, David E.
Sandberg, David E.
中科院分区:
医学3区
文献类型:
--
作者:
Boyse, Kyla L.;Gardner, Melissa;Marvicsin, Donna J.;Sandberg, David E.

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本研究的特点的经验和表达的需求,父母诊断后,他们的新生儿先天性肾上腺皮质增生症(CAH)。六个家长(四个母亲和两个父亲)进行了采访,他们如何了解CAH及其管理,其次是定性数据分析。编码的成绩单揭示了几个主题,包括健康沟通问题,缺乏医疗家庭和决策支持,并渴望父母对父母的社会支持。研究结果对意外新生儿诊断后如何提供以家庭为中心的医疗保健具有影响。
This study characterizes the experiences and expressed needs of parents following diagnosis of their newborn with congenital adrenal hyperplasia (CAH). Six parents (four mothers and two fathers) were interviewed about how they learned about CAH and its management, followed by qualitative data analysis. Coding of transcripts revealed several themes, including health communication problems, a lack of medical home and decision support, and a desire for parent-to-parent social support. Findings have implications for how family-centered health care is delivered following an unexpected newborn diagnosis.
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