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• W4386591815 abstract "Abstract There is a paucity of research on the experiences of parents of children with trisomy X (47,XXX). Increased prenatal diagnoses associated with advances in noninvasive prenatal screening necessitate a better understanding of how trisomy X impacts family systems. This qualitative investigation aimed to describe the lived experience of parents of young daughters with prenatally identified trisomy X to guide genetic counseling. Semi‐structured qualitative interviews were conducted via teleconferencing with parents ( n = 11) of girls with trisomy X, ages 6–44 months. A descriptive phenomenological approach was used to code transcripts for significant statements and reduce data into themes describing the experience of receiving a diagnosis of trisomy X and the experience of early parenting in this population. Participants described an emotional journey of adapting to prenatally identified trisomy X. Four descriptive themes included two related, yet distinct, life stages: Negative Diagnostic Experience and a Hopeful Early Childhood, as well as two ongoing experiences: Persistent Ambiguity and Coping with and Adapting to Uncertainty. Results suggest providers should carefully consider word choice and timing in delivery of diagnosis, and genetic counseling should provide expectant parents with current research specific to trisomy X, facilitate connections with other parents of young girls with trisomy X, introduce developmental monitoring approaches, and be prepared to support families with a range of emotional responses to the diagnosis and decisions regarding disclosure." @default.
• W4386591815 created "2023-09-12" @default.
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• W4386591815 date "2023-09-10" @default.
• W4386591815 modified "2023-10-12" @default.
• W4386591815 title "The emotional journey of adapting to prenatally identified trisomy X" @default.
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• W4386591815 doi "https://doi.org/10.1002/jgc4.1778" @default.
• W4386591815 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/37691399" @default.
• W4386591815 hasPublicationYear "2023" @default.
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