Subjective need for psychological support (PsySupp) in parents of children and adolescents with disorders of sex development (dsd)
Disorders/diversity of sex development (dsd) is an umbrella term for congenital conditions often diagnosed within childhood. As most parents are unprepared for this situation, psychological support (PsySupp) is recommended. The aim of this study was to analyse the extent to which parents express a need for PsySupp. Three hundred twenty-nine parents of children with dsd were included; 40.4 % of the parents indicated to have a need for PsySupp, only 50 % of this group received it adequately. The diagnoses partial gonadal dysgenesis, partial androgen insensitivity syndrome (pAIS) and disorders of androgen synthesis are associated with a high need for PsySupp in parents (54, 65, and 50 %). Sex assignment surgery neither reduced nor increased the need for PsySupp. Taking a picture, radiography, laparoscopy, gonadal biopsy, gonadectomy and hormonal puberty induction are associated with a high need for PsySupp. There was no association between the need for PsySupp and the parents’ perception of the appearance of the genitalia.
What is known
• In parents, having a child with dsd provokes insecurities and fears. Hence, psychological support is recommended as part of the interdisciplinary care.
What is new
• This is the first study investigating the subjective need for psychological support in a large sample of parents of children with dsd in Germany. We present data on the subjective need for psychological support of the parents, related diagnoses and factors, which should be considered in psychological counselling.
Keywordsdsd Disorders of sex development Psychological support Parents Congenital adrenal hyperplasia
Congenital adrenal hyperplasia
Child Behavior and Attitudes Questionnaire
Disorders/diversity of sex development
Diagnostic group with children with female gender of rearing, 46,XY dsd
Diagnostic group with children with female gender of rearing with 46,XX dsd and androgen effects
Diagnostic group with children with female gender of rearing, 46,XY dsd or mocaicism and partial androgen effects
Diagnostic group with children with male gender of rearing, 46,XY dsd or mocaicism and partial androgen effects without androgen effects
Partial androgen insensitivity syndrome
Complete androgen insensitivity syndrome
The study was funded by the German Ministry of Education and Science (FKZ 01GM0311). Thanks go to all cooperating psychologists and physicians of the DSD Network Working Group willing to help with recruitment and clinical data . The authors thank the experts who supported the development of the medical questionnaire, the members of the advisory board (http://www.netzwerk-is.de) and the interviewers in Germany, Austria and Switzerland.
Special thanks go to all the parents and their children who participated; without their openness and commitment to talk about very personal aspects of life the study would not have been possible.
Conflicts of interest
Elena Bennecke: conception and design, analysis and interpretation of data, drafting the article and final approval of the version to be published; Knut Werner-Rosen: conception and design of the article; Ute Thyen: interpretation of data, revising it critically for important intellectual content; Eva Kleinemeier: revising the article critically for important intellectual content; Anke Lux: analysis of data; Martina Jürgensen: revising the article critically for important intellectual content; Annette Grüters: final approval of the version to be published; and Birgit Köhler: conception and design, analysis and interpretation of data, revising the article critically for important intellectual content and final approval of the version to be published.
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