Parental expectations of raising a child with disability in decision-making for prenatal testing and termination of pregnancy: A mixed methods study

Ngan, Olivia Miu Yung; Yi, Huso; Bryant, Louise; Sahota, Daljit Singh; Chan, Olivia Yiu Man; Ahmed, Shenaz

doi:10.1016/j.pec.2020.05.010

Cited by 9 publications

(11 citation statements)

References 36 publications

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“…Some believe that raising a child with a disability will be a less rewarding experience than raising an able-bodied child (109). Having a disabled child can be considered a disruption to the "natural order" (68, p. 4) or a burden on the family and can raise concerns about financial security (84,109). It can also be seen as a failure to meet cultural expectations related to parental obligations (68) or to meet social norms related to being a good mother (7,68).…”

Section: Mainland Chinamentioning

confidence: 99%

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The Emergence and Global Spread of Noninvasive Prenatal Testing

Ravitsky

Roy

Haidar

et al. 2021

Annu. Rev. Genom. Hum. Genet.

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Since its introduction in 2011, noninvasive prenatal testing (NIPT) has spread rapidly around the world. It carries numerous benefits but also raises challenges, often related to sociocultural, legal, and economic contexts. This article describes the implementation of NIPT in nine countries, each with its own unique characteristics: Australia, Canada, China and Hong Kong, India, Israel, Lebanon, the Netherlands, the United Kingdom, and the United States. Themes covered for each country include the structure of the healthcare system, how NIPT is offered, counseling needs and resources, and cultural and legal context regarding disability and pregnancy termination. Some common issues emerge, including cost as a barrier to equitable access, the complexity of decision-making about public funding, and a shortage of appropriate resources that promote informed choice. Conversely, sociocultural values that underlie the use of NIPT vary greatly among countries. The issues described will become even more challenging as NIPT evolves from a second-tier to a first-tier screening test with expanded use. Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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Section: Mainland Chinamentioning

confidence: 99%

“…Termination of pregnancy for medical reasons is common and seen as less morally complex than it is in the Western context (84,109). In both China and Hong Kong, terminations of pregnancies diagnosed with abnormal chromosomal aneuploidies are common (81,171).…”

Section: Mainland Chinamentioning

confidence: 99%

The Emergence and Global Spread of Noninvasive Prenatal Testing

Ravitsky

Roy

Haidar

et al. 2021

Annu. Rev. Genom. Hum. Genet.

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“…Furthermore, women feel a sort of social pressure in so far as they consider the risk assessment compulsory and they perceive the responsibility of doing the right thing ( Ngan et al, 2020 ; Salema et al, 2018 ).…”

Section: Resultsmentioning

confidence: 99%

“…As several studies have shown, the choice of prenatal testing involves the couple and rarely external elements ( Laberge et al, 2019 ; Nazaré et al, 2011 ). However, the social pressure felt by women, who often interpret prenatal testing as part of pregnancy routine without a real conscious choice, should not be underestimated ( Ngan et al, 2020 ; Salema et al, 2018 ).…”

Section: Discussionmentioning

confidence: 99%

Decision-making factors in prenatal testing: A systematic review

Mattei

Ferrari

Perego

et al. 2021

Health Psychology Open

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This review examines the factors that affect the decision-making process of parental couples evaluating prenatal screening and diagnostic tests. A systematic search was performed using PubMed and PsycInfo databases. The 46 included studies had to: investigate the decision-making process about prenatal testing; focus on tests detecting trisomy 21, 18, 13, and abnormalities of sex chromosomes; be published in English peer-reviewed journals. The decision-making process seems composed of different levels: an individual level with demographic, clinical, and psychological aspects; a contextual level related to the technical features of the test and the information received; a relational level involving family and society.

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“…It is a delicate question and difficult to answer, as one can only hypothesise from their current situation in that moment what their response will be. This response may change during different stages of life and be influenced by their parenting experience and indirect experience of other parents who have children with disabilities [16].…”

Section: Introductionmentioning

confidence: 99%

Would I have Wanted to Know? A Qualitative Exploration of Women’s Attitudes, Beliefs and Concerns about Non-Invasive Prenatal Testing for de novo Genetic Conditions after having a Child with a de novo Genetic Disorder

Long¹,

Lobo²,

O’Leary³

et al. 2021

obm genet

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Non-invasive prenatal testing (NIPT) for a panel of 25 single gene disorders became available in Western Australia in 2020 and potentially may be able to test for panels of hundreds of disorders as is the case with reproductive carrier screening. How this information would be used by parents in a population screening model is unknown. We used a phenomenological approach to explore retrospectively whether mothers of children with single gene or chromosomal disorders would have wanted to know about their child’s genetic diagnosis prior to delivery. Themes were identified such as having a child with a de novo disorder and effect on pregnancy outcomes in hypothetical situations, impact on family function, the diagnostic journey and personal growth. These themes related to both the concept of expanded NIPT (ENIPT) and the situation of having a child with a de novo genetic disorder that could now hypothetically be detected through ENIPT. Opinions were divided about whether participants would have wanted to know about their affected child’s condition, indicating any expanded NIPT testing panels would need to be offered in the context of an appropriate comprehensive counselling program. How this would be provided on a population screening level and the role of genetic counselling needs further exploration.

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Parental expectations of raising a child with disability in decision-making for prenatal testing and termination of pregnancy: A mixed methods study

Abstract: This is a repository copy of Parental expectations of raising a child with disability in decision-making for prenatal testing and termination of pregnancy: A mixed methods study.

Cited by 9 publications

References 36 publications

The Emergence and Global Spread of Noninvasive Prenatal Testing

The Emergence and Global Spread of Noninvasive Prenatal Testing

Decision-making factors in prenatal testing: A systematic review

Would I have Wanted to Know? A Qualitative Exploration of Women’s Attitudes, Beliefs and Concerns about Non-Invasive Prenatal Testing for de novo Genetic Conditions after having a Child with a de novo Genetic Disorder

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