The DOI matches its Crossref record; 40 of the 40 references it cites were found in a registry or an index.
How the Child’s Gender Matters for Families Having a Child With Congenital Adrenal Hyperplasia
Open accessAbstract
Children with congenital adrenal hyperplasia (CAH) are exposed to high levels of testosterone in utero often resulting in nontypical genitalia at birth for girls. The purpose of this analysis, which draws on data from a larger study, was to examine, based on the gender of the child, the family experiences of having a child with CAH. Sixteen parents were interviewed, and comparisons were made across all categories coded in the parents’ interviews to examine similarities and differences in the experiences of families based on the child’s gender. Families having a daughter with CAH experienced additional challenges when compared with families having a son. These include fear of stigmatization, challenging surgical decisions, and concerns regarding disclosure of the condition. Acknowledging this and creating support programs tailored for girls that address surgical procedures and complications resulting from being born with elevated testosterone are critical to promoting a healthy family and child response.
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“The mental health of patients with CAH is another example; although most studies focus on females, increased psychiatric symptomatology in both sexes mirrors observations for a wide range of chronic medical conditions (547,594-597).”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [547]
In the citing paper
“Compared to controls, patients with classic CAH have higher prevalence of anxiety, depression, alcohol misuse, suicidality and adjustment disorders (394,547,597)(also see section V.F).”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [547]
In the citing paper
“Males diagnosed beyond the neonatal period and women with the most severe null genotype are especially at risk for mental health issues (547,594,597).”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [547]
Citations
Cites
Three Approaches to Qualitative Content Analysis
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Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study
Vaismoradi, M., Turunen, H., & Bondas, T. (2013) · Nursing & Health Sciences · doi:10.1111/nhs.12048 · Cited by 8,327
Speiser, P. W., Azziz, R., Baskin, L. S., Ghizzoni, L., Hensle, T. W., Merke, D. P., Meyer-Bahlburg, H. F. L., Miller, W. L., Montori, V. M., Oberfield, S. E., et al. (2010) · The Journal of Clinical Endocrinology & Metabolism · doi:10.1210/jc.2009-2631 · Cited by 1,468 · cited 5×
“All children with CAH are at significant risk for adrenal crisis, defined as an abrupt, life-threatening state with symptoms including hypotension, pallor, fatigue, headache, tachycardia, and vomiting, due to steroid deficiency (Speiser et al., 2010).”
BackgroundInfluentialIs there a bias against telephone interviews in qualitative research?
Novick, G. (2008) · Research in Nursing & Health · doi:10.1002/nur.20259 · Cited by 1,353
Within-Case and Across-Case Approaches to Qualitative Data Analysis
Ayres, L., Kavanaugh, K. L., & Knafl, K. A. (2003) · Qualitative Health Research · doi:10.1177/1049732303013006008 · Cited by 998
Self-citationCongenital adrenal hyperplasia.
Merke, D. P., & Bornstein, S. R. (2005) · The Lancet · doi:10.1016/s0140-6736(05)66736-0 · Cited by 628 · cited 1×
“Gender assignment in these affected females can pose both a medical and family emergency (Merke & Bornstein, 2005; Speiser et al., 2010).”
BackgroundGender dysphoria and gender change in chromosomal females with congenital adrenal hyperplasia
Dessens, A. B., Slijper, F. M. E., & Drop, S. L. S. (2005) · Archives of Sexual Behavior · doi:10.1007/s10508-005-4338-5 · Cited by 425
Congenital Adrenal Hyperplasia
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Cited by
Sorted by citations
Standards of Care for the Health of Transgender and Gender Diverse People, Version 8
Coleman, E., Radix, A., Bouman, W. P., Brown, G. R., de Vries, A. L. C., Deutsch, M. B., Ettner, R., Fraser, L., Goodman, M. G., Green, J., et al. (2022) · International Journal of Transgender Health · doi:10.1080/26895269.2022.2100644 · Cited by 3,022
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
Tracing the Use of the Family Management Framework and Measure: A Scoping Review
Knafl, K. A., Deatrick, J. A., Gallo, A. M., & Cosgrove, B. (2021) · Journal of Family Nursing · doi:10.1177/1074840721994331 · Cited by 43
Self-citationFisher, R. S., Espeleta, H. C., Baskin, L. S., Buchanan, C., Chan, Y.-M., Cheng, E. Y., Coplen, D. E., Diamond, D. A., Nokoff, N., Palmer, B. W., et al. (2021) · Journal of Pediatric Urology · doi:10.1016/j.jpurol.2021.10.001 · Cited by 21
Johnson, J., Johnson, O., Heyhoe, J., Fielder, C., & Dunning, A. (2018) · Journal of Family Nursing · doi:10.1177/1074840718772808 · Cited by 14
Metadata
- Authors
- Fleming, L., Knafl, K., & Van Riper, M.
- Affiliations
- University of North Carolina at Chapel Hill (US)
- University of North Carolina at Chapel Hill School of Nursing, USA
- Corresponding author
- Fleming, Louise
- Venue
- Journal of Family Nursing
- Publisher
- SAGE Publications
- Published
- 2017-10-19
- Volume
- 23
- Issue
- 4
- Pages
- 516-533
- ISSN
- 1074-8407 (ISSN-L)
- 1552-549X
- OpenAlex
- W2765654065
- Cited by
- 18
- References
- 40
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 2 · 2023: 2 · 2022: 2 · 2021: 5 · 2020: 1 · 2019: 1 · 2018: 1
- FWCI
- 0.34
- Type
- journal article
- Language
- en
- Open access
- green
- doi.org
- Locations
- Journal of Family Nursing (publishedVersion)
- PubMed (publishedVersion)
- Carolina Digital Repository (University of North Carolina at Chapel Hill) (submittedVersion)
- UNC Libraries
- Funders
- National Institute of Nursing Research
- Topics
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Sexual Differentiation and Disorders
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Adrenal Hormones and Disorders
- Social Sciences › Psychology › Social Psychology › LGBTQ Health, Identity, and Policy
- Keywords
- congenital adrenal hyperplasia, child gender, family experiences, parental experiences, prenatal testosterone exposure, stigmatization, surgical decision-making, family support
- MeSH terms
- Adolescent, Adrenal Hyperplasia, Congenital, Adult, Child, Child, Preschool, Family, Female, Genitalia, Female, Genitalia, Male, Humans, Male, Middle Aged, Sex Factors, Caregivers, Social Stigma
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