Partnering with parents to disclose Klinefelter syndrome to their child
Isabelle Tremblay1,2, Guy Van Vliet2,3, Monique Gonthier2,4
1Department of Psychology, Sainte-Justine Hospital, Quebec, Canada.
Insights
Disclosing Klinefelter syndrome (KS) to children requires a personalized approach. Recommendations suggest starting disclosure between ages 5-13 for prenatal diagnoses, with tailored strategies for all patients.
Area of Science:
- Pediatrics
- Genetics
- Child Psychology
Background:
- Klinefelter syndrome (KS) diagnosis in children can occur prenatally or postnatally due to symptoms like learning difficulties or delayed puberty.
- Disclosure of the KS diagnosis to affected children presents challenges for parents and healthcare professionals (HCPs).
- Current lack of clear guidelines contributes to discomfort and prolonged withholding of information.
Purpose of the Study:
- To explore parental and HCP perceptions regarding the disclosure of Klinefelter syndrome diagnoses.
- To propose communication strategies and recommendations for disclosing KS to children.
Main Methods:
- The abstract does not specify the methods used in the study.
Main Results:
- Parental and HCP perceptions on KS disclosure may differ, leading to communication challenges.
- Absence of guidelines results in discomfort and delayed disclosure.
Conclusions:
- A gradual, personalized disclosure process is recommended for children diagnosed prenatally, ideally starting between ages 5 and 13.
- Personalized communication strategies are essential for disclosing Klinefelter syndrome to all patients, regardless of age at diagnosis.
Unlabelled:
In paediatrics, a diagnosis of Klinefelter syndrome can occur after prenatal testing or because of symptoms such as learning difficulties or incomplete puberty. After the diagnosis, parents have to decide when and how to speak about this condition to their child. Parents and healthcare professionals (HCPs) may have different perceptions related to disclosure of this diagnosis. Due to the absence of clear guidelines, parents and HCPs may feel uncomfortable discussing the condition and may hide the truth in a prolonged fashion.
Conclusion:
For patients with a prenatal diagnosis, we recommend a gradual and personalised disclosure process starting between the ages of 5 and 13 years. For older patients, a personalised approach should also be the goal. Various communication strategies and recommendations regarding disclosure of Klinefelter syndrome are proposed.
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