Chelsea Valentin1, Andy Smidt2, Rebecca Barton3, Nathan J Wilson4, Bethea How5. 1. Occupational Therapy, Faculty of Health Sciences, University of Sydney, Sydney, Australia. Electronic address: cval6429@uni.sydney.edu.au. 2. Speech Pathology, Faculty of Health Sciences, University of Sydney, Cumberland C42, PO Box 170, Sydney, New South Wales 1825, Australia. Electronic address: andy.smidt@sydney.edu.au. 3. Occupational Therapy, Faculty of Health Sciences, University of Sydney, Sydney, Australia. Electronic address: rebecca.barton@sydney.edu.au. 4. School of Nursing and Midwifery Western Sydney University Sydney, Australia. Electronic address: N.Wilson@westernsydney.edu.au. 5. Speech Pathology, Faculty of Health Sciences, University of Sydney, Cumberland C42, PO Box 170, Sydney, New South Wales 1825, Australia. Electronic address: bhow8448@uni.sydney.edu.au.
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.
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.
Authors: Leniza G de Castro-Hamoy; Ma-Am Joy R Tumulak; Maria Stephanie Fay S Cagayan; Peter A Sy; Nona Rachel C Mira; Mercy Y Laurino Journal: J Community Genet Date: 2022-06-02