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The health-care experiences of families given the prenatal diagnosis of trisomy 18

Journal of Perinatology volume 28, pages 12–19 (2008)Cite this article

Abstract

Objective:

The objective of this study was to examine parent-reported experiences in the health care system after receiving the prenatal diagnosis of trisomy 18 and to identify factors that contribute to satisfaction with care.

Study Design:

Nineteen families who received the diagnosis between 2002 and 2005 were given semistructured telephone interviews. Of the 19 families, 11 continued the pregnancy while the remaining 8 chose induced abortion. Classical content analysis was utilized to identify themes among subject responses.

Result:

We identified several specific aspects of care as key in either being highly satisfied or dissatisfied: expressions of empathy from provider, continuity of care, communication, valuing the fetus and participation in medical decision-making.

Conclusions:

Aspects of care that were identified as reasons for dissatisfaction are potentially modifiable by training, education or team-based approaches. Further studies are necessary to determine how we can improve the quality of services during prenatal diagnosis.

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Acknowledgements

No financial support was provided to the authors for this research.

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Author notes

  1. L V Walker

    Present address: 4Current address: Reproductive Genetics Institute, Chicago, IL, USA,

Authors and Affiliations

  1. Department of Human Genetics, University of Michigan, Ann Arbor, MI, USA

    L V Walker

  2. Trisomy 18 Foundation Inc, Dale City, VA, USA

    V J Miller

  3. Department of Obstetrics and Gynecology, University of Michigan, Ann Arbor, MI, USA

    V K Dalton

Authors
  1. L V Walker
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  2. V J Miller
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  3. V K Dalton
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Correspondence to V K Dalton.

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Walker, L., Miller, V. & Dalton, V. The health-care experiences of families given the prenatal diagnosis of trisomy 18. J Perinatol 28, 12–19 (2008). https://doi.org/10.1038/sj.jp.7211860

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  • DOI: https://doi.org/10.1038/sj.jp.7211860

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