دورية أكاديمية
"It was an overwhelming thing": parents' needs after infant diagnosis with congenital adrenal hyperplasia.
| العنوان: | "It was an overwhelming thing": parents' needs after infant diagnosis with congenital adrenal hyperplasia. |
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| المؤلفون: | 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. |
| المصدر: | Journal of pediatric nursing [J Pediatr Nurs] 2014 Sep-Oct; Vol. 29 (5), pp. 436-41. Date of Electronic Publication: 2014 Jan 15. |
| نوع المنشور: | Journal Article; Research Support, N.I.H., Extramural |
| اللغة: | English |
| بيانات الدورية: | Publisher: W.B. Saunders Country of Publication: United States NLM ID: 8607529 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1532-8449 (Electronic) Linking ISSN: 08825963 NLM ISO Abbreviation: J Pediatr Nurs Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: 1989- : Philadelphia, Pa : W.B. Saunders Original Publication: [Orlando, FL] : Grune & Stratton, [c1986- |
| مواضيع طبية MeSH: | Needs Assessment*, Adrenal Hyperplasia, Congenital/*diagnosis , Parents/*psychology, Adaptation, Psychological ; Adult ; Communication ; Female ; Humans ; Infant, Newborn ; Interviews as Topic ; Male ; Qualitative Research ; Retrospective Studies ; Social Support |
| مستخلص: | 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.) |
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| معلومات مُعتمدة: | R01 HD068138 United States HD NICHD NIH HHS; R41 HD057714 United States HD NICHD NIH HHS |
| فهرسة مساهمة: | Keywords: Children with special health care needs; Chronic conditions; Congenital adrenal hyperplasia; Decision support; Disorders of sex development; Endocrinology; Health literacy; Infants; Interview; Medical home; Newborn screening; Parents; Qualitative; Retrospective; Social support |
| تواريخ الأحداث: | Date Created: 20140205 Date Completed: 20160829 Latest Revision: 20231104 |
| رمز التحديث: | 20231215 |
| مُعرف محوري في PubMed: | PMC4099414 |
| DOI: | 10.1016/j.pedn.2014.01.007 |
| PMID: | 24491814 |
| قاعدة البيانات: | MEDLINE |
Full Text via ClinicalKey 
Full Text Finder | تدمد: | 1532-8449 |
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| DOI: | 10.1016/j.pedn.2014.01.007 |