The DOI matches its Crossref record, with a small difference in title or year; 1 of the 1 references it cites were found in a registry or an index.
Informing parents about positive newborn screen results: Parents' recommendations
Open accessAbstract
This descriptive study examined parents’ reactions to newborn screening (NBS) results and their recommendations for improving communication. Dimensional and content analyses were conducted on interviews with 203 parents of 106 infants having positive NBS results. Diagnostic results confirmed infants as having congenital hypothyroidism ( n = 37), cystic fibrosis ( n = 26), or being cystic fibrosis (CF)-carriers ( n = 43). Parents’ reactions ranged from ‘very scary’ to ‘not too concerned’. Most reported feeling shock, panic, and worry; some reported guilt. Parents in the CF and CF-carrier groups preferred face-to-face disclosure as the communication channel; whereas congenital hypothyroidism group parents supported telephone contacts. Parents recommended providers be well informed, honest, and calm; personalize disclosure, avoid jargon, listen carefully, encourage questions, recognize parental distress, offer realistic reassurance, pace amount and rate of information, assess parents’ understanding, and refer to specialists. We conclude that provider–patient communication approach and channel can exacerbate or alleviate parents’ negative reactions to positive NBS results.
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“Second, optimizing mineralocorticoid treatment appears to improve fertility SW and SV patients (365,591,663), but the exact mechanism remains unknown.”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [591]
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“Compared to age-matched controls, women with CAH have fewer pregnancies and children.”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [591]
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Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management
Claahsen - van der Grinten, H. L., Speiser, P. W., Ahmed, S. F., Arlt, W., Auchus, R. J., Falhammar, H., Flück, C. E., Guasti, L., Huebner, A., Kortmann, B. B. M., et al. (2022) · Endocrine Reviews · doi:10.1210/endrev/bnab016 · Cited by 556
van Trotsenburg, P., Stoupa, A., Léger, J., Rohrer, T., Peters, C., Fugazzola, L., Cassio, A., Heinrichs, C., Beauloye, V., Pohlenz, J., et al. (2021) · Thyroid® · doi:10.1089/thy.2020.0333 · Cited by 469
Metadata
- Authors
- Salm, N., Yetter, E., & Tluczek, A.
- Affiliations
- University of Wisconsin, USA
- Corresponding author
- Tluczek, Audrey
- ORCID
- Tluczek, Audrey
- Venue
- Journal of Child Health Care
- Publisher
- SAGE Publications
- Published
- 2012-09-14
- Volume
- 16
- Issue
- 4
- Pages
- 367-381
- ISSN
- 1367-4935 (ISSN-L)
- 1741-2889
- PMC
- PMC3619388
- OpenAlex
- W2154207918
- Cited by
- 69
- References
- 1
- Citations by year
- 2026: 5 · 2025: 4 · 2024: 5 · 2023: 8 · 2022: 8 · 2021: 6 · 2020: 7 · 2019: 6 · 2018: 4 · 2017: 2 · 2016: 2 · 2015: 6 · 2014: 3 · 2013: 2 · 2012: 1
- FWCI
- 6.82
- Type
- journal article
- Language
- en
- Open access
- green
- europepmc.org
- Locations
- Journal of Child Health Care (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (UL1TR000427)
- National Center for Research Resources (UL1RR025011)
- National Center for Advancing Translational Sciences
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (K23 HD42098, K23HD042098)
- Topics
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genomics and Rare Diseases
- Keywords
- newborn screening, positive screening results, parental reactions, provider-patient communication, congenital hypothyroidism, cystic fibrosis, cystic fibrosis carriers, telephone communication, parental distress, parental guilt, communication recommendations
- MeSH terms
- Adult, Communication, Congenital Hypothyroidism, Cystic Fibrosis, Female, Genetic Carrier Screening, Humans, Infant, Newborn, Infant, Newborn, Diseases, Interviews as Topic, Male, Parents, Neonatal Screening
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