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European Journal of Pediatrics

, Volume 174, Issue 10, pp 1287–1297 | Cite as

Subjective need for psychological support (PsySupp) in parents of children and adolescents with disorders of sex development (dsd)

  • Elena BenneckeEmail author
  • Knut Werner-Rosen
  • Ute Thyen
  • Eva Kleinemeier
  • Anke Lux
  • Martina Jürgensen
  • Annette Grüters
  • Birgit Köhler
Original Article

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.

Conclusion: 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.

Keywords

dsd Disorders of sex development Psychological support Parents Congenital adrenal hyperplasia 

Abbreviations

CAH

Congenital adrenal hyperplasia

CBAQ

Child Behavior and Attitudes Questionnaire

dsd

Disorders/diversity of sex development

dsd-XY-c-f

Diagnostic group with children with female gender of rearing, 46,XY dsd

dsd-XX-p-f

Diagnostic group with children with female gender of rearing with 46,XX dsd and androgen effects

dsd-XY-p-f

Diagnostic group with children with female gender of rearing, 46,XY dsd or mocaicism and partial androgen effects

dsd-XY-p-m

Diagnostic group with children with male gender of rearing, 46,XY dsd or mocaicism and partial androgen effects without androgen effects

pAIS

Partial androgen insensitivity syndrome

cAIS

Complete androgen insensitivity syndrome

PsySupp

Psychological support

Notes

Acknowledgments

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 [15]. 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

None.

Authors’ contribution

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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Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • Elena Bennecke
    • 1
    Email author
  • Knut Werner-Rosen
    • 1
  • Ute Thyen
    • 2
  • Eva Kleinemeier
    • 2
  • Anke Lux
    • 3
  • Martina Jürgensen
    • 4
  • Annette Grüters
    • 1
  • Birgit Köhler
    • 1
  1. 1.Institute of Experimental Paediatric EndocrinologyCharité, University MedicineBerlinGermany
  2. 2.Hospital for Children and AdolescentsUniversity of LübeckLübeckGermany
  3. 3.Institute for Biometrics and Medical InformaticsOtto-von-Guericke UniversityMagdeburgGermany
  4. 4.Institute for Social Medicine and EpidemiologyUniversity of LübeckLübeckGermany

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