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

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 te...

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Bibliographic Details
Published in:Journal of genetic counseling 2017-06, Vol.26 (3), p.556-566
Main Authors: Moudi, Zahra, Miri-Moghaddam, Ebrahim
Format: Article
Language:English
Subjects:
Abortion, Induced - psychology
Adult
beta-Thalassemia
Beta‐thalassemia major
Biomedical and Life Sciences
Biomedicine
Clinical Psychology
Declined abortion
Ethics
Female
Genetic Testing
Gynecology
Human Genetics
Humans
Iran
Original Research
Pregnancy
Prenatal Diagnosis
Public Health
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Summary: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.
ISSN:1059-7700
1573-3599
DOI:10.1007/s10897-016-0019-x