The emotional journey of adapting to prenatally identified trisomy X.
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 t...
| Publicado en: | Journal of Genetic Counseling Vol. 33; no. 4; pp. 793 - 805 |
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| Autores principales: | , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Aug2024
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=178974008&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 178974008 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Aug2024 vid: 33 iid: 4 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 178974008 171837527 178974008 178974008 10.1002/jgc4.1778 178974008 ppf: 793 ppct: 12 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: The emotional journey of adapting to prenatally identified trisomy X. aug: au: Thompson, Talia Tisher, Jessica Davis, Shanlee Miller, Christina Kirk, Jillian Tartaglia, Nicole Howell, Susan affil: Department of Pediatrics, University of Colorado School of Medicine, Aurora Colorado,, USA sug: subj: Sex Chromosome Disorders of Sex Development Familial and Genetic Sex Chromosome Aberrations Life Experiences Adaptation, Psychological Prenatal Diagnosis Genetic Counseling Psychosocial Factors Human Funding Source Male Female Infant Child, Preschool Parents Psychosocial Factors Aneuploidy Qualitative Studies Semi-Structured Interview Teleconferencing Descriptive Statistics Descriptive Research Phenomenological Research Coping Expectant Parents Psychosocial Factors Emotions Infant: 1-23 months Child, Preschool: 2-5 years Male Female ab: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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