"It Was an Overwhelming Thing": Parents' Needs After Infant Diagnosis With Congenital Adrenal Hyperplasia

被引：38

作者：

Boyse, Kyla L. ^{[1
]}

Gardner, Melissa ^{[2
]}

Marvicsin, Donna J. ^{[1
]}

Sandberg, David E. ^{[2
,3
]}

机构：

[1] Univ Michigan, Sch Nursing, Ann Arbor, MI 48109 USA

[2] Univ Michigan, Child Hlth Evaluat & Res CHEAR Unit, Ann Arbor, MI 48109 USA

[3] Univ Michigan, Dept Pediat & Communicable Dis, Div Child Behav Hlth, Ann Arbor, MI 48109 USA

来源：

JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES | 2014年 / 29卷 / 05期

关键词：

Qualitative; Retrospective; Interview; Infants; Parents; Children with special health care needs; Chronic conditions; Congenital adrenal hyperplasia; Health literacy; Social support; Endocrinology; Newborn screening; Medical home; Decision support; Disorders of sex development; INFORMATION NEEDS; CHILDREN; FAMILY; CARE; EXPERIENCES;

D O I：

10.1016/j.pedn.2014.01.007

中图分类号：

R47 [护理学];

学科分类号：

1011 ;

摘要：

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. (C) 2014 Elsevier Inc. All rights reserved.

引用

页码：436 / 441

页数：6

共 32 条

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