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

Abstract

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.