Literature DB >> 26351292

Couple's Narratives of Communion and Isolation Following Abnormal Prenatal Microarray Testing Results.

Allison Werner-Lin1, Frances K Barg2, Katherine S Kellom2, Kallyn J Stumm3, Lisa Pilchman3, Ashley N Tomlinson2, Barbara A Bernhardt2.   

Abstract

In 2% to 3% of cases, prenatal microarray testing detects deletions and duplications in a fetus' genome that are undetected by conventional cytogenetics. Many of these changes are associated with variable or uncertain symptomatology. Little is known about how couples experience uncertain results. This study analyzed 24 interviews with members of 12 heterosexual U.S. couples who received pathogenic or uncertain microarray prenatal testing results. Researchers used narrative analysis to examine couples' understanding and incorporation of findings into decision making regarding pregnancy termination. Couples felt unprepared for these findings and frustrated because scant information was available to aid interpretation. Women sought information and made decisions, and men marginalized their distress to support their wives. A shift in voice from first to second person indicated attempts to normalize emotional responses by making the process "common" to all couples. Families pursuing highly sensitive prenatal testing may need expert guidance to support decision making.
© The Author(s) 2015.

Entities:  

Keywords:  Northeast and Mid-Atlantic; cytogenetics; decision making; families; fathers; genetic disorders; mothers; narrative analysis; pregnancy; prenatal testing

Mesh:

Year:  2015        PMID: 26351292     DOI: 10.1177/1049732315603367

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  13 in total

1.  Impacts of variants of uncertain significance on parental perceptions of children after prenatal chromosome microarray testing.

Authors:  Preeya Desai; Hannah Haber; Jessica Bulafka; Amita Russell; Rebecca Clifton; Julia Zachary; Seonjoo Lee; Tianshu Feng; Ronald Wapner; Catherine Monk; Wendy K Chung
Journal:  Prenat Diagn       Date:  2018-07-24       Impact factor: 3.050

Review 2.  Balancing Genetics (Science) and Counseling (Art) in Prenatal Chromosomal Microarray Testing.

Authors:  Allison Werner-Lin; Judith L M McCoyd; Barbara A Bernhardt
Journal:  J Genet Couns       Date:  2016-05-21       Impact factor: 2.537

3.  Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results.

Authors:  M A Rubel; A Werner-Lin; F K Barg; B A Bernhardt
Journal:  Cult Med Psychiatry       Date:  2017-09

4.  Parental motivations for and adaptation to trio-exome sequencing in a prospective prenatal testing cohort: Beyond the diagnosis.

Authors:  Asha N Talati; Kelly L Gilmore; Emily E Hardisty; Anne D Lyerly; Christine Rini; Neeta L Vora
Journal:  Prenat Diagn       Date:  2022-02-16       Impact factor: 3.242

5.  "Something Extra on Chromosome 5": Parents' Understanding of Positive Prenatal Chromosomal Microarray Analysis (CMA) Results.

Authors:  Sarah A Walser; Allison Werner-Lin; Amita Russell; Ronald J Wapner; Barbara A Bernhardt
Journal:  J Genet Couns       Date:  2016-03-04       Impact factor: 2.537

6.  Assessing women's preferences towards tests that may reveal uncertain results from prenatal genomic testing: Development of attributes for a discrete choice experiment, using a mixed-methods design.

Authors:  Jennifer Hammond; Jasmijn E Klapwijk; Sam Riedijk; Stina Lou; Kelly E Ormond; Ida Vogel; Lisa Hui; Emma-Jane Sziepe; James Buchanan; Charlotta Ingvoldstad-Malmgren; Maria Johansson Soller; Eleanor Harding; Melissa Hill; Celine Lewis
Journal:  PLoS One       Date:  2022-01-28       Impact factor: 3.240

7.  Accuracy of in-utero MRI to detect fetal brain abnormalities and prognosticate developmental outcome: postnatal follow-up of the MERIDIAN cohort.

Authors:  Anthony R Hart; Nicholas D Embleton; Michael Bradburn; Daniel J A Connolly; Laura Mandefield; Cara Mooney; Paul D Griffiths
Journal:  Lancet Child Adolesc Health       Date:  2019-11-27

8.  Couples experiences of receiving uncertain results following prenatal microarray or exome sequencing: A mixed-methods systematic review.

Authors:  Eleanor Harding; Jennifer Hammond; Lyn S Chitty; Melissa Hill; Celine Lewis
Journal:  Prenat Diagn       Date:  2020-05-24       Impact factor: 3.242

9.  Parental experiences of uncertainty following an abnormal fetal anomaly scan: Insights using Han's taxonomy of uncertainty.

Authors:  Jennifer Hammond; Jasmijn E Klapwijk; Melissa Hill; Stina Lou; Kelly E Ormond; Karin E M Diderich; Sam Riedijk; Celine Lewis
Journal:  J Genet Couns       Date:  2020-07-07       Impact factor: 2.717

10.  Patient-Centered Obstetric Care in the Age of Cell-Free Fetal DNA Prenatal Screening.

Authors:  Patricia K Agatisa; Mary Beth Mercer; Ariane Mitchum; Marissa B Coleridge; Ruth M Farrell
Journal:  J Patient Exp       Date:  2017-08-30
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