ArticleJournal of genetic counseling2014
LQTS parents' reflections about genetic risk knowledge and their need to know or not to know their children's carrier status.
Article in Journal of genetic counseling, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Family Relationships Associated With Communication and Testing for Inherited Cardiac Conditions.Western journal of nursing research · 2019Article
- Family Communication About Genetic Risk of Hereditary Cardiomyopathies and Arrhythmias: an Integrative Review.Journal of genetic counseling · 2018Review
- Care of girls and women with Turner syndrome: beyond growth and hormones.Endocrine connections · 2017Review
- Exploring the Discussion of Risk of Sudden Cardiac Death.Pediatric cardiology · 2016Article
- Psychological stress associated with cardiogenetic conditions.Personalized medicine · 2014Article
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Long QT syndrome (LQTS) is a contributor to unexplained deaths in infants (SIDS), children, teenagers and young adults. A gene test result may allow for individual tailored treatment, but also pose a burden of knowing one's carrier status, with no treatment recommendation. Genetic risk knowledge in the case of LQTS can promote adjustment and coping, but also fear anxiety, ambivalence and moral dilemmas. This makes it challenging to respect both the right to know and the right not to know. The purpose of this study was to explore LQTS parents' perception of genetic knowledge, and their need to know or not to know about their children's carrier status. Qualitative, semi structured interviews were conducted with thirteen parents of LQTS-children. Results show that parents found it important to know the result of a gene test for LQTS including their children's carrier status. The risk was framed and incorporated into their everyday life and their life perspectives. Pertinent moral dilemmas concerned information disclosure to children and relatives. Parents thought that early and gradual disclosure to children would promote coping. Parents' moral dilemmas were rarely addressed during encounters with healthcare providers. The participants had several suggestions for improvement in that regard.
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Registered trials
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