Mothers of a child with Down syndrome: A qualitative analysis of the perspectives on non-invasive prenatal testing. (September 2019)

• Record Type: Journal Article
• Authors: Valentin, Chelsea; Smidt, Andy; Barton, Rebecca; Wilson, Nathan J; How, Bethea
• Is Part Of: Midwifery. Volume 76(2019)
• Page Start: 118
• Page End: 124
• Publication Date: 2019-09
• Subjects: Down syndrome -- Non-invasive prenatal testing -- Counsellor -- Mothers -- Intellectual disability -- Gender; Midwifery -- Periodicals; Midwifery -- Periodicals; Sages-femmes -- Périodiques; Midwifery; Periodicals; Electronic journals; 618.2005
• DOI: 10.1016/j.midw.2019.06.001
• Languages: English
• ISSNs: 0266-6138

Abstract

Highlights: Health professionals need to be aware that mothers of a child with Down syndrome hold nuanced and personal views on non-invasive prenatal testing, which cannot be generalized and must be individually respected. Health professionals need to present prenatal testing as a choice for individuals to make, and provide adequate time for parents to make informed decisions about whether to undergo a prenatal test and what actions to take following a positive result. Balanced information about both the medical and social implications about raising a child with Down syndrome must accompany the choice to prenatally test and the choice to terminate or not. 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.