In the Dark: Challenges of Caring for Sons with Klinefelter Syndrome

被引：20

作者：

Close, Sharron ^{[1
]}

Sadler, Lois ^{[2
]}

Grey, Margaret ^{[2
]}

机构：

[1] Emory Univ, Nell Hodgson Woodruff Sch Nursing, Atlanta, GA 30322 USA

[2] Yale Univ, Sch Nursing, West Haven, CT USA

来源：

JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES | 2016年 / 31卷 / 01期

关键词：

KS; Qualitative research; Mixed methods; Stress; Quality of life; Family management; FAMILY MANAGEMENT; PREVALENCE; PARENTS; DIAGNOSIS; PHENOTYPE; BOYS; ADJUSTMENT; MORBIDITY; CHILDREN;

D O I：

10.1016/j.pedn.2015.05.002

中图分类号：

R47 [护理学];

学科分类号：

1011 ;

摘要：

The purpose of this mixed method study was to describe family management challenges for parents who have sons with Klinefelter Syndrome (KS). Standardized survey results showed that stress, quality of life and family management struggles varied by parent age. When interviewed, parents described feeling uninformed and without support to make decisions about managing their sons' KS. Parents reported that a lack of guidance and case coordination created barriers in caring for their sons throughout childhood. Given the prevalence of KS, health care providers need to be prepared to provide comprehensive evaluation and anticipatory guidance for KS boys and families. (C) 2016 Elsevier Inc. All rights reserved.

引用

页码：11 / 20

页数：10

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