Truth-telling and Turner Syndrome: The Importance of Diagnostic Disclosure

• Published in: The Journal of pediatrics Vol. 148; no. 1; pp. 102 - 107
• Main Authors: Sutton, Erica J., Young, Jessica, McInerney-Leo, Aideen, Bondy, Carolyn A., Gollust, Sarah E., Biesecker, Barbara B.
• Format: Journal Article
• Language: English
• Published: New York, NY Mosby, Inc 2006; Elsevier
• Subjects: Adolescent; Adult; Biological and medical sciences; Child; Confidentiality - standards; Disclosure - standards; Disclosure - statistics & numerical data; Female; General aspects; Growth Hormone - therapeutic use; Gynecology. Andrology. Obstetrics; Health Personnel - psychology; Humans; Infertility - diagnosis; Infertility - psychology; Male and female genital diseases. Gonadal dysgenesis. Hermaphroditism. Sex hormones resistance; Medical sciences; Middle Aged; Parents - psychology; Patient Access to Records - standards; Qualitative Research; Turner Syndrome - diagnosis; Turner Syndrome - drug therapy; Turner Syndrome - psychology; HCP; TS; Chromosomal aberration; Pediatrics; Dysgenesia; Malformation; Gonad; Genital system; Sexual differentiation disorder; Diagnosis; Turner syndrome; Female genital diseases; Communication
• ISSN: 0022-3476; 1097-6833
• DOI: 10.1016/j.jpeds.2005.08.022

A targeted analysis with transcript data from previous research was designed to study the perceived effects of secret-keeping on individuals with Turner syndrome (TS). Girls and women (n = 97) and 21 parents participated in the initial interview study. Transcripts were coded and analyzed for constructs related to secret-keeping. Thirty percent of participants spontaneously mentioned that their health care providers (HCP) or parents had withheld all or part of their TS diagnosis. Of those, 15 individuals were not informed of the infertility component of their diagnosis. Individuals reporting secret-keeping were more likely to have had a negative perception of the HCP's role in the disclosure process compared with those participants who did not report that a secret had been kept ( P < .025). The prevalence of secret-keeping within this sample population suggests it is likely an existing concern in the greater TS population. How HCPs disclose a TS diagnosis may affect whether secrets are kept. Conversely, secret-keeping may result in a negative disclosure experience. These observations suggest the need for interventions aimed at helping HCPs disclose health-related information to parents and their children in a timely, caring, and sensitive manner.