title: Improving the communication of healthcare professionals with affected children and adolescents.
abstract: All communication with children and adolescents with disorders of sex development (DSD) must be age appropriate and tailored to their developmental levels and needs. Communication is as much about information concerning the DSD as it is about listening to the individual's thoughts, questions and anxieties. Especially small children are dependent on, and are best reached or helped through the parents. If the diagnosis is made early the child should 'grow into disclosure'. The parents and the child should be involved in a continuous educational interactive process. Sexual maturation and development are part of growing up and becoming an independent adult, which makes it even more important to discuss these matters and the disorder directly with the patient. There are specific aspects of communication inherent to DSD conditions, related to sexuality and, thus, to personal existential issues. Physicians may find this difficult to talk about and may need to overcome avoidance and fear of incompetency. This chapter provides knowledge about the developmental stages of understanding in all children and how the manner in which information can be adjusted to the individual child's maturity level is the basis for successful communication and supporting of the psychological adaptation of the individual and the family to live with the condition.
authors.affiliation: Department of Women and Child Health, Karolinska Institutet, Solna, Sweden.
authors.forename: Anna
authors.initials: A
authors.lastname: Nordenström
authors.forename: Ute
authors.initials: U
authors.lastname: Thyen
mesh_terms: D000293:Adolescent; D002648:Child; D003142:Communication; D012734:Disorders of Sex Development; D006801:Humans; D011369:Professional-Patient Relations