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J Pediatr Psychol. 2017 Jun 1;42(5):504-519. doi: 10.1093/jpepsy/jsw058.

Coping With Diverse Sex Development: Treatment Experiences and Psychosocial Support During Childhood and Adolescence and Adult Well-Being.

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University Medical Center Hamburg-Eppendorf, Hamburg, Germany.



The purpose of this exploratory, retrospective, and correlational study was to examine the relationships between childhood treatment experiences, parental care, and social support, and outcome in adults with different diverse sex development (DSD).


The data of 69 participants from an exploratory questionnaire were collected in a retrospective German study.


The majority received medical treatment in relation to their DSD during childhood and adolescence. Seventy percent reported having had a best friend and 29% a confidant during childhood. Sixty-one percent showed clinically relevant psychological distress, and 45% reported suicidal thoughts at least at one point in their lives. Quality of parental care and having had a best friend correlated positively with adult outcome, whereas treatment experiences correlated with aspects of impaired adjustment.


Social support and DSD-related treatment experiences appear to have an impact on adult well-being. Appropriate psychosocial care including peer-to-peer support should be made available to children with DSD and their families.


adaptation; adjustment; adolescents; chronic illness; coping; disorders of sex development; parenting; parenting style; psychosocial functioning; quality of life; renal and urology; resilience; social support; stress

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