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Factors influencing whether or not couples seek genetic counselling: an explorative study in a paediatric surgical
I Hobus1, P G Frets, H J Duivenvoorden
1Department of Clinical Genetics, Erasmus University, Rotterdam, The Netherlands.
Insights
Parents
Area of Science:
- Medical Genetics
- Clinical Genetics
- Paediatric Surgery
Background:
- Congenital anomalies in children admitted to the Intensive Care Unit (ICU) often warrant genetic counselling for parents.
- Decisions regarding seeking genetic counselling are ultimately left to the parents' discretion.
Purpose of the Study:
- To identify key factors influencing parental decisions to pursue genetic counselling after a child's diagnosis of a major congenital anomaly.
- To explore the impact of perceived usefulness and clarity of information on seeking genetic counselling.
Main Methods:
- Home interviews were conducted with parents of 37 children diagnosed with major congenital anomalies.
- Statistical assessment of factors influencing the decision to seek genetic counselling.
Main Results:
- Perceived usefulness of genetic counselling and clear, correct information about its indication were paramount factors influencing uptake.
- Parental intention for subsequent pregnancies did not correlate with seeking genetic counselling.
- A significant loss of information regarding referrals for genetic counselling was noted between initial consultation and discharge letters.
Conclusions:
- Clear communication and perceived value are crucial for encouraging parents to seek genetic counselling.
- Improving information transfer through routine inclusion in discharge letters and dedicated physician coordination can reduce information loss.
- Physician respect for parental resistance to genetic counselling, coupled with exploration of its underlying reasons, may help mitigate such resistance.
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.