title: Factors influencing whether or not couples seek genetic counselling: an explorative study in a paediatric surgical unit.
abstract: To investigate the factors influencing whether or not couples seek genetic counselling, the parents of 37 children with a major congenital anomaly were interviewed at home. All the children had been admitted to the Intensive Care Unit (ICU) of the Department of Paediatric Surgery. After physical examination of the child, the consultant clinical geneticist stated that genetic counselling was indicated for the parents. Whether they sought genetic counselling was left to the parents to decide. Eighteen of the 37 parents had sought genetic counselling. Assessment of the joint influence of a number of factors revealed that two factors were separately paramount in distinguishing between couples who did seek genetic counselling and those who did not: whether parents considered genetic counselling useful in their case shortly after the birth of their affected child, and whether the couple was clearly and correctly informed about the indication for genetic counselling. The intention to have a subsequent pregnancy was not associated with whether or not couples sought genetic counselling. Loss of information was observed: 1/3 of the referrals for genetic counselling mentioned on the written consultation forms were not stated in the discharge letters. This loss of information could have been reduced by a) routinely including the indication for genetic counselling in the discharge letter and b) appointing a coordinating physician to ensure that the parents were informed clearly about the availability of genetic counselling. Resistance to genetic counselling needs to be respected by the physician. Exploring its background might help to reduce this resistance.
authors.affiliation: Department of Clinical Genetics, Erasmus University, Rotterdam, The Netherlands.
authors.forename: I
authors.initials: I
authors.lastname: Hobus
authors.forename: P G
authors.initials: PG
authors.lastname: Frets
authors.forename: H J
authors.initials: HJ
authors.lastname: Duivenvoorden
authors.forename: D
authors.initials: D
authors.lastname: Tibboel
authors.forename: M F
authors.initials: MF
authors.lastname: Niermeijer
mesh_terms: D001294:Attitude to Health; D000013:Congenital Abnormalities / Q000601:surgery*; D003657:Decision Making; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D008297:Male; D009042:Motivation; D012189:Retrospective Studies