‘We would have missed out so much had we terminated’: What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome

2018 ◽  
Vol 23 (3) ◽  
pp. 290-309 ◽  
Author(s):  
Bethea How ◽  
Andy Smidt ◽  
Nathan J Wilson ◽  
Rebecca Barton ◽  
Chelsea Valentin

Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availability of NIPT. Thematic network analysis revealed that although fathers appreciated an early diagnosis with NIPT, they saw the test as being a predetermined pathway to termination. Fathers felt that expectation to terminate reflects negative societal attitudes towards those with Down syndrome and disability, fearing that NIPT may become a form of eugenics. Fathers retrospectively contrasted these attitudes with the actual reality of raising their children with Down syndrome, which they described as bringing joy to their lives. Findings suggest that although fathers valued NIPT as an information-giving tool that allowed autonomous parental choices about the pregnancy, they believe that it should be accompanied by balanced information about the reality of raising a child with Down syndrome.

2019 ◽  
Vol 2 (2) ◽  
pp. 21-22
Author(s):  
Meghan Chevalier

With the advent of Non-Invasive Prenatal Testing, Chris Kaposy believes that more people should choose to parent children with Down Syndrome. Kaposy advocates for the Social Disability Model and recommends a normative pragmatic approach as standard. He makes use of both quantitative and qualitative evidence to support his position.


2016 ◽  
Vol 26 (3) ◽  
pp. 522-531 ◽  
Author(s):  
Rachèl V. van Schendel ◽  
Adriana Kater-Kuipers ◽  
Elsbeth H. van Vliet-Lachotzki ◽  
Wybo J. Dondorp ◽  
Martina C. Cornel ◽  
...  

Author(s):  
Robert M. Hodapp ◽  
Ellen G. Casale

Compared to parents of children with other types of intellectual disabilities, parents of children with Down syndrome experience less stress and more rewards, although this “Down syndrome advantage” mostly occurs compared to parents of children with autism and before groups are equated. Behaviorally, children with Down syndrome display more sociable interactional styles and baby-faced facial features, along with fewer instances of severe behavior problems. Demographically, parents of children with (versus without) Down syndrome average 5 years older when giving birth; parents are more often well educated, married, of higher socioeconomic status, and they likely provide these children greater financial and cultural resources. In most industrialized societies, rates of Down syndrome seem steady, with easily available, noninvasive prenatal testing counteracted by increasing numbers of women giving birth at older ages. Parenting children with Down syndrome relates to characteristics of children, their parents, and society, all of which intersect in important, underexplored ways.


2014 ◽  
Vol 19 (1) ◽  
pp. 9-14 ◽  
Author(s):  
Philip Twiss ◽  
Melissa Hill ◽  
Rebecca Daley ◽  
Lyn S. Chitty

2015 ◽  
Vol 18 (5) ◽  
pp. 260-271 ◽  
Author(s):  
Elke Mersy ◽  
Christine E.M. de Die-Smulders ◽  
Audrey B.C. Coumans ◽  
Luc J.M. Smits ◽  
Guido M.W.R. de Wert ◽  
...  

2019 ◽  
Vol 8 (4) ◽  
pp. 402-407
Author(s):  
Zeynep Guldem Okem ◽  
Gokcen Orgul ◽  
Berna Tari Kasnakoglu ◽  
Mehmet Cakar ◽  
Mehmet Sinan Beksac

2014 ◽  
Vol 23 (5) ◽  
pp. 805-813 ◽  
Author(s):  
Gregory Kellogg ◽  
Leah Slattery ◽  
Louanne Hudgins ◽  
Kelly Ormond

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