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Parents' Experiences with Genetic Counseling After the Birth of a Baby with a Genetic Disorder: An Exploratory Study

Collins, V., Halliday, J., Kahler, S., Williamson, R.,

Academic Literature

2001

This article presents findings from semi-structured interviews with parents of four children born with cystic fibrosis (CF) and ten with Down's syndrome (DS) to ascertain reasons for using, or not using, genetic counseling services in the state of Victoria, Australia. The authors also explored the usefulness of genetic counseling for the families who had experienced it, and the perceived role of genetic counseling.

All mothers of children with CF see a genetic counselor as part of a structured education program following diagnosis through newborn screening. Information overload was identified by them as an important problem. The timing of the offer of genetic counseling is important and needs to take into account parents' coping strategies after diagnosis. Several parents commented on the favorable aspects of counseling, including getting information they needed to deal with the diagnosis and relief of guilt.

Publication information

Journal/Publication : Journal of Genetic Counseling

Location : International

Domain/s: Health and wellbeing, Social relationships

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