Journal of Genetic Counseling

, Volume 26, Issue 3, pp 556–566 | Cite as

Decisions Regarding Pregnancy Termination Due to β-Thalassemia Major: a Mixed-Methods Study in Sistan and Baluchestan, Iran

Original Research

Abstract

In the present study, an embedded design was applied in order to conduct a one-year cross-sectional audit of chorionic villus sampling (CVS) and foetal outcomes affected by β-thalassemia major (β-TM) in a prenatal diagnosis (PND) setting. In addition, we explored the decisions regarding pregnancy termination among women whose pregnancy (or child) was affected by β-TM. In the quantitative phase, the available data in the clients’ medical records were analysed, while the qualitative phase was performed using a grounded theory method. Interviews were performed with nine pregnant women who had decided against pregnancy termination despite positive CVS results, 11 mothers who had admitted their child to the thalassemia ward for blood transfusion, and 19 mothers who had received positive CVS results and had decided against pregnancy termination in the preceding year. Over one year, 18.6 % of women decided against pregnancy termination despite positive CVS results. Two main themes related to decisions against pregnancy termination emerged from the qualitative data: 1) Cognitive factors (questioning the reliability of the tests or doubts about the accuracy of the results, understanding disease recurrence, curability, perceived severity of the disease, and lack of “real-life experiences”); and 2) Sociocultural responsiveness (family opposition, responsibility before God, and self-responsiveness). All of the mentioned factors could intensify fear of abortion in couples due to possible regret, and encourage a decision against pregnancy termination.

Keywords

Beta-thalassemia major Genetic testing Prenatal diagnosis Declined abortion Iran 

Notes

Acknowledgments

We would like to express our gratitude to all the participants and the staff who contributed to the present study. Additionally, we would like to thank Zahedan University of Medical Science (ZAUMS) for the financial support.

Compliance with Ethical Standards

Conflicts of Interest

The authors declare no competing interests in this study.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institution and natinal) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants in the study.

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Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  1. 1.Department of Midwifery, Pregnancy Health Research CenterZahedan University of Medical SciencesZahedanIran
  2. 2.Department of GeneticsZahedan University of Medical SciencesZahedanIran

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