ESPE Abstracts (2014) 82 P-D-1-3-101

Subjective Need for Psychological Support in Parents of Children with dsd: Results from the German Clinical Evaluation Study

Elena Benneckea, Knut Werner-Rosena, Heiko Krudea, Ute Thyenb, Anke Luxc, Eva Kleinemeierb, Martina Jürgensend, Birgit Köhlera & Group DSD Network Workinga


aCharité, Paediatric Endocrinology, Berlin, Germany; bHospital for Children and Adolescents, Universität zu Lübeck, Lübeck, Germany; cInstitute for Biometrics and Medical Informatics, University Magdeburg, Lübeck, Germany; dInstitute for Social Medicine and Epidemiology, University Lübeck, Lübeck, Germany


Introduction: The diagnosis of a disorder/difference of sexual development (dsd) is an exceptional psychosocial situation. As the diagnosis is often made in childhood, the parents are the primary communication partners. In some cases, the impossibility of immediate sex determination of the child can be a traumatic experience with a negative impact on the relationship between the parents and the child, the couple and members of the entire family. It has been recommended by the Chicago DSD Consensus Group (2005) and the German Ethical Committee (2012) that interdisciplinary care should include a psychologist.

Methods: The subjective need for psychological support in parents (n=317) of children with dsd was investigated in the German Clinical Evaluation Study (2003–2008). Diagnoses were classified into dsd-46-X or 46-XY without (c) or with partial (P) androgen effects, and female (F) or male (M) sex of rearing. Factors influencing parental need for psychological support were investigated.

Results: 40.4% of the parents of children with dsd expressed a need for psychological support and 77.3% of these reported not having received psychological care as needed. Parents of children included in the diagnostic subgroup dsd-46-XY-P-F (XY dsd with partial androgen effects) expressed significantly more need for psychological support (58.7%). Moreover, hormonal puberty induction, taking a photo of the child’s genitalia, laparotomy and gonadal biopsy were associated with an increased need for psychological support (55.1%; 49.0%; 66.7%; 56.7%). Further results will be presented.

Discussion: The special situation of having a child with dsd is associated with a high parental need for psychological support. Considering fears of stigmatization by psychotherapy, an even higher need for psychological counselling can be assumed. Factors such as the diagnosis of dsd 46-XY-P-F and invasive medical procedures lead to a higher need for psychological support. This might be due to more insecurities and fears of the parents induced by these factors.