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The Lived Experience of Families of Children With 22q11 Deletion Syndrome of the Disclosure of the Diag-nosis
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The Lived Experience of Families of Children With 22q11 Deletion Syndrome of the Disclosure of the Diag-nosis
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Journal Article
The Lived Experience of Families of Children With 22q11 Deletion Syndrome of the Disclosure of the Diag-nosis
2025
Overview
Ayoub discusses her study on the lived experiences of families receiving a diagnosis of 22q11 Deletion Syndrome (22q11DS), a common genetic disorder affecting multiple body systems. Through interviews with 36 diverse families, the research identified three key themes around diagnosis disclosure: the circumstances of disclosure, family reactions, and the diagnosis's impact. The study emphasizes that ethical disclosure requires informed consent and clear communication about genetic implications, including privacy and testing of relatives. Respecting both parental and child autonomy is crucial to support informed decision-making without overwhelming families. The role of clinical ethics is highlighted in guiding disclosures with transparency, compassion, and clarity to help families cope with the diagnosis.
Publisher
MedStar Washington Hospital Center
Subject
