Mothers of a child with Down syndrome: A qualitative analysis of the perspectives on non-invasive prenatal testing.

Midwifery

Speech Pathology, Faculty of Health Sciences, University of Sydney, Cumberland C42, PO Box 170, Sydney, New South Wales 1825, Australia. Electronic address:

Published: September 2019

Objective: The introduction of non-invasive prenatal testing (NIPT) for Down syndrome (DS) has sparked social and ethical debates. To date, in-depth exploration of the voices of Australian mothers of a child with DS about NIPT has been lacking. The purpose of this study was to investigate the perspectives of Australian mothers of a child with DS towards the increasing availability of NIPT.

Design And Setting: Fifteen mothers of children with DS aged 8 months-39 years participated in-depth interviews, conducted online via the software Zoom™. An inductive thematic analysis of interview data explored mothers' perceptions of NIPT.

Findings: Mothers perspectives were nuanced and personal to each woman's circumstance. All mothers highlighted the inevitable association between testing and termination, the importance of autonomy and respecting [m]others' choices to test and to terminate, and that appropriate supports must be provided to ensure informed decision-making. These perspectives existed within an overarching theme of NIPT reflecting and reinforcing societal attitudes towards disability.

Conclusion: Mothers of a child with DS viewed informed decision-making as crucial both prior to undertaking NIPT and following a positive test result. This study adds a unique Australian perspective to the necessary ongoing social and ethical debate.

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Source
http://dx.doi.org/10.1016/j.midw.2019.06.001DOI Listing

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