title: Subjective need for psychological support (PsySupp) in parents of children and adolescents with disorders of sex development (dsd).
abstract: 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.
  
  
  CONCLUSIONS
  Having a child with dsd is associated with a high need for PsySupp in parents. In particular, parents of children with XY-dsd with androgen effects other than hypospadias expressed a high need of PsySupp. PsySupp for parents should be an obligatory part of interdisciplinary care to reduce fears and concerns. 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.
authors: Institute of Experimental Paediatric Endocrinology, Charité, University Medicine, Augustenburger Platz 1, 13353, Berlin, Germany. elena.bennecke@charite.de.
authors: Elena
authors: E
authors: Bennecke
authors: Institute of Experimental Paediatric Endocrinology, Charité, University Medicine, Augustenburger Platz 1, 13353, Berlin, Germany. werner-rosen@web.de.
authors: Knut
authors: K
authors: Werner-Rosen
authors: Hospital for Children and Adolescents, University of Lübeck, Lübeck, Germany. ute.thyen@uksh.de.
authors: Ute
authors: U
authors: Thyen
authors: Hospital for Children and Adolescents, University of Lübeck, Lübeck, Germany. kleinemeier@paedia.ukl.mu-luebeck.de.
authors: Eva
authors: E
authors: Kleinemeier
authors: Institute for Biometrics and Medical Informatics, Otto-von-Guericke University, Magdeburg, Germany. Anke.Lux@med.ovgu.de.
authors: Anke
authors: A
authors: Lux
authors: Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany. ute.thyen@uksh.de.
authors: Martina
authors: M
authors: Jürgensen
authors: Institute of Experimental Paediatric Endocrinology, Charité, University Medicine, Augustenburger Platz 1, 13353, Berlin, Germany. Annette.Grueters@charite.de.
authors: Annette
authors: A
authors: Grüters
authors: Institute of Experimental Paediatric Endocrinology, Charité, University Medicine, Augustenburger Platz 1, 13353, Berlin, Germany. birgit.koehler@charite.de.
authors: Birgit
authors: B
authors: Köhler
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D012734:Disorders of Sex Development / Q000523:psychology* / Q000534:rehabilitation; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011594:Psychometrics / Q000379:methods*; D012189:Retrospective Studies; D012741:Sexual Maturation; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Congenital adrenal hyperplasia; Disorders of sex development; Parents; Psychological support; dsd