Did you find that out in time?”: New life trajectories of parents who choose to continue a pregnancy where a genetic disorder is diagnosed or likely

Authors

  • Chriselle L. Hickerton,

    1. Murdoch Childrens Research Institute, Parkville, Victoria, Australia
    2. Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
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  • MaryAnne Aitken,

    1. Murdoch Childrens Research Institute, Parkville, Victoria, Australia
    2. Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
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  • Jan Hodgson,

    1. Murdoch Childrens Research Institute, Parkville, Victoria, Australia
    2. Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
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  • Martin B. Delatycki

    Corresponding author
    1. Murdoch Childrens Research Institute, Parkville, Victoria, Australia
    2. Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
    3. Department of Clinical Genetics, Austin Health, Heidelberg, Victoria, Australia
    • Director, Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Royal Children's Hospital, Flemington Road, Parkville, 3052 Victoria, Australia.
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  • How to Cite this Article: Hickerton CL, Aitken MA, Hodgson J, Delatycki MB. 2012. “Did you find that out in time?”: New life trajectories of parents who choose to continue a pregnancy where a genetic disorder is diagnosed or likely. Am J Med Genet Part A 158A:373–383.

Abstract

The availability of tests to detect genetic conditions prenatally has expanded considerably in recent decades. These advances allow women and couples choices; the choice of whether or not to undergo prenatal screening or diagnosis and therefore the choice whether to continue or terminate a pregnancy. Following prenatal testing many people choose to terminate an affected pregnancy, however little is known about the experiences of parents who choose to continue such a pregnancy. This exploratory qualitative study involved in-depth interviews with five mothers and four fathers who experienced a pregnancy where a genetic diagnosis was, or could have been, detected prenatally. Transcripts of the interviews were analyzed using thematic analysis. While the participants' experiences of genetic diagnoses and prenatal choices varied, findings revealed three major categories triggering new life trajectories for all of these parents: knowledge of reproductive risk and receiving a genetic diagnosis; adapting to diagnosis and new life path; and attitudes to prenatal diagnosis and disability. Parents reported that while dealing with their own attitudes and getting on with their “new world,” positive and negative attitudes of others impacted on these parents' experiences. A conceptual model arising from the major themes is offered as a way of thinking about this paradigm. Parents who continue a pregnancy where a genetic condition is detected or suspected prenatally, can be supported appropriately by health professionals while adjusting to their new life path. © 2011 Wiley Periodicals, Inc.

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