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

Autor: Boyse KL; School of Nursing, University of Michigan, Ann Arbor, MI. Electronic address: kylaboys@umich.edu., Gardner M; Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, MI., Marvicsin DJ; School of Nursing, University of Michigan, Ann Arbor, MI., Sandberg DE; Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, MI; Division of Child Behavioral Health, Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI.
Jazyk: angličtina
Zdroj: Journal of pediatric nursing [J Pediatr Nurs] 2014 Sep-Oct; Vol. 29 (5), pp. 436-41. Date of Electronic Publication: 2014 Jan 15.
DOI: 10.1016/j.pedn.2014.01.007
Abstrakt: 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.
(Copyright © 2014 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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