Abstract
The aims of the current study were twofold: (1) to assess the prevalence/severity of posttraumatic stress symptoms (PTSS) as well as cognitive and emotional responses in parents whose children were diagnosed with a disorder of sex development (DSD); and (2) to assess factors which contributed to PTSS. We hypothesized that parents would show elevated levels of PTSS and that negative cognitive and/or emotional responses would be predictive. Participants were parents of children diagnosed with a DSD. Thirty-six mothers and 11 fathers completed a measure of posttraumatic stress and reported difficulties in the domains of cognition (e.g., confusion) and emotion (e.g., grief). Using multiple regression, we determined factors contributing to parental PTSS. Reported PTSS was high: 31 % of mothers and 18 % of fathers met the threshold for caseness for Posttraumatic Stress Disorder. Regression included: child sex, parent sex, child age at diagnosis, years since diagnosis, genital ambiguity, father occupation, cognitive confusion, and emotional distress. Only cognitive confusion contributed significantly to variance in PTSS. Parents of children with DSD may experience the diagnosis as traumatic, evidenced by high rates of PTSS in the current report. Assessment of reactions to their children’s diagnoses revealed that cognitive confusion, and not emotional distress, predicted PTSS. In this case, direct cognitive interventions may be applicable. Though psychological support is widely recommended, no detailed intervention has been offered. Our findings suggest that we may directly apply models successful in other areas of pediatrics, such as pediatric oncology. Future studies may assess the usefulness of such an intervention.
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Achermann, J. C., & Hughes, I. A. (2011). Disorders of sex development. In H. M. Kronenberg, S. Melmed, K. S. Polonsky, & P. R. Larsen (Eds.), Williams textbook of endocrinology (pp. 863–894). Philadelphia: Saunders.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
Claahsen-van der Griten, H. L., Otten, B. J., Takahashi, S., Meuleman, E. J. H., Hulsbergen-van de Kaa, C., Sweep, F. C. G. J., et al. (2007). Testicular adrenal rest tumors in adult males with congenital adrenal hyperplasia: Evaluation of pituitary-gonadal function before and after successful testis-sparing surgery in eight patients. Journal of Clinical Endocrinology and Metabolism, 92, 612–615.
Cohen-Kettenis, P. T. (2010). Psychosocial and psychosexual aspects of disorders of development. Best Practices & Research Clinical Endocrinology & Metabolism, 24, 325–334.
Creamer, M., Bell, R., & Failla, S. (2003). Psychometric properties of the Impact of Events Scale-Revised. Behaviour Research and Therapy, 41, 1489–1496.
Crissman, H. P., Warne, L., Gardner, M., Carr, M., Schast, A., Quittner, A. L., et al. (2011). Children with disorders of sex development: A qualitative study of early parental experience. International Journal of Pediatric Endocrinology, 10(1). doi:10.1186/1687-9856-2011-10.
Duguid, A., Morrison, S., Robertson, A., Chalmers, J., Youngson, G., & Ahmed, S. F. (2007). The psychological impact of genital anomalies on the parents of affected children. Acta Paediatrica, 96, 348–352.
Hewitt, J. K., & Warne, G. L. (2009). Management of disorders of sex development. Pediatric Health, 3, 51–65.
Hughes, I. A., Davies, J., Bunch, T. I., Pasterski, V., Mastroyannopoulou, K., & McDougall, J. (2012). Androgen insensitivity syndrome. Lancet, 380, 1419–1428.
Hughes, I. A., Houk, C., Ahmed, S. F., Lee, P. A., & LWPES1/ESPE2 Consensus Group. (2006). Consensus statement on management of intersex disorders. Archives of Disease in Childhood, 91, 554–562.
Kazak, A. E. (2006). Pediatric psychosocial preventative health model (PPPHM): Research, practice, and collaboration in pediatric family systems medicine. Family Systems Health, 24, 391–395.
Kazak, A. E., Alderfer, M., Rourke, M. T., Simms, S., Streisand, R., & Grossman, J. R. (2004). Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. Journal of Pediatric Psychology, 29, 211–219.
Kazak, A. E., Kassam-Adams, N., Schneider, S., Zelikovsky, N., Alderfer, M. A., & Rourke, M. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31, 343–355.
Kazak, A. E., Rourke, M. T., Alderfer, M. A., Pai, A., Reilly, A. F., & Meadows, A. T. (2007). Evidence-based assessment, intervention and psychosocial care in pediatric oncology: A blueprint for comprehensive services across treatment. Journal of Pediatric Psychology, 32, 1099–1110.
Kitamura, T. (2005). Stress-reductive effects of information disclosure to medical and psychiatric patients. Psychiatry and Clinical Neurosciences, 59, 627–633.
Lee, P. A., Houk, C. P., Ahmed, S. A., & Hughes, I. A. (2006). Consensus statement on management of intersex disorders. Pediatrics, 118, 488–500.
Liao, L. M., Tacconelli, E., Wood, D., Conway, G., & Creighton, S. M. (2010). Adolescent girls with disorders of sex development: A needs analysis of transitional care. Journal of Pediatric Urology, 6, 609–613.
Matroyannopoulou, K., Stallard, P., & Lenton, S. (2006). The impact of childhood non-malignant life-threatening illness on parents: Gender differences and predictors of parental adjustment. Journal of Child Psychology and Psychiatry, 38, 823–829.
Pasterski, V., Prentice, P., & Hughes, I. A. (2010a). Impact of the consensus statement and the new DSD classification system. Best Practices & Research Clinical Endocrinology & Metabolism, 24, 187–195.
Pasterski, V., Prentice, P., & Hughes, I. A. (2010b). Consequences of the Chicago consensus on disorders of sex development (DSD): Current practices in Europe. Archives of Disease in Childhood, 95, 618–623.
Slijper, F. M. E., Frets, P. G., Boehmer, A. L. M., Drop, S. L. S., & Neirmeijer, M. F. (2000). Androgen insensitivity syndrome (AIS): Emotional reactions of parents and adult patients to the clinical diagnosis of AIS and its confirmation by androgen receptor gene mutation analysis. Hormone Research, 53, 9–15.
Sutton, E. J., Young, J., McInerney-Leo, A., Bondy, C. A., Gollust, S. E., & Besecker, B. B. (2006). Truth-telling and Turner syndrome: The importance of diagnostic disclosure. Journal of Pediatrics, 148, 102–107.
Winston, F., Kassam-Adams, N., Vivarelli-O’Neill, C., Ford, J., Newman, E., Baxt, C., et al. (2002). Acute stress disorder symptoms in children and their parents after pediatric traffic injury. Pediatrics, 109, e90–e97.
Woelfle, J., Hoepffner, W., & Sippell, W. G. (2002). Complete virilisation in congenital adrenal hyperplasia: Clinical course, medical management and disease-related complications. Clinical Endocrinology, 56, 231–238.
Acknowledgments
We thank all of the families whose participation made this study possible. We also thank the CAH Support Group of the United Kingdom for recruiting members/families to this study. We thank Sue Elford of the CAH Support Group and other members of the AIS Support Group for giving valuable input in the developmental stages of the study. Interviews were carried out with the support of the Addenbrooke’s Clinical Research Centre and funding was provided by NIHR Cambridge Biomedical Research Centre.
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Pasterski, V., Mastroyannopoulou, K., Wright, D. et al. Predictors of Posttraumatic Stress in Parents of Children Diagnosed with a Disorder of Sex Development. Arch Sex Behav 43, 369–375 (2014). https://doi.org/10.1007/s10508-013-0196-8
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DOI: https://doi.org/10.1007/s10508-013-0196-8