Parenting the Child With Down Syndrome: Understanding—but Going Beyond—the “Down Syndrome Advantage”

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

2021 ◽  
Vol 2 (1) ◽  
pp. 29-41
Author(s):  
Mansour Mohammed Ali Bopaeda

Having a baby is a huge responsibility. It often happens that mothers, especially when they are having their first baby, feel stressed and incompetent in their role as mothers even as their children normally grows. The purpose of this article is to identify the general features of psychological stress among mothers of autism spectrum disorder and Down syndrome and to identify the differences and relationship in psychological stress between mothers of autism and down syndrome. In this study participated a group of mothers with children who have autism (n = 44) and mothers of children with Down syndrome (n = 44). The findings made proved that the general features of psychological stress are high Among mothers of autistic children, while it was low among mothers of Down syndrome, there were also statistically significant differences in the level of psychological stress between mothers of autism and Down syndrome, and a correlation was found between mothers of autism and Down syndrome at the level of significance (0.01).


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.


2020 ◽  
pp. 019459982095483
Author(s):  
Philip D. Knollman ◽  
Christine H. Heubi ◽  
Susan Wiley ◽  
David F. Smith ◽  
Sally R. Shott ◽  
...  

Objectives To compare the demographic and clinical characteristics of children with Down syndrome who did and did not receive polysomnography to evaluate for obstructive sleep apnea after publication of the American Academy of Pediatrics’ guidelines recommending universal screening by age 4 years. Study Design Retrospective cohort study. Setting Single tertiary pediatric hospital. Methods Review was conducted of children with Down syndrome born between 2007 and 2012. Children who obtained polysomnography were compared with children who did not, regarding demographic data, socioeconomic status, and comorbidities. Results We included 460 children with Down syndrome; 273 (59.3%) received at least 1 polysomnogram, with a median age of 3.6 years (range, 0.1-8.9 years). There was no difference in the distribution of sex, insurance status, or socioeconomic status between children who received polysomnography and those who did not. There was a significant difference in race distribution ( P = .0004) and distance from home to the medical center ( P < .0001) between groups. Among multiple medical comorbidities, only children with a history of hypothyroidism ( P = .003) or pulmonary aspiration ( P = .01) were significantly more likely to have obtained polysomnography. Conclusions Overall, 60% of children with Down syndrome obtained a polysomnogram. There was no difference between groups by payer status or socioeconomic status. A significant difference in race distribution was noted. Proximity to the medical center and increased medical need appear to be associated with increased likelihood of obtaining a polysomnogram. This study illustrates the need for improvement initiatives to increase the proportion of patients receiving guideline-based screening.


2014 ◽  
Vol 37 (2) ◽  
pp. 141-147 ◽  
Author(s):  
C.F. Poon ◽  
W.C. Tse ◽  
K.O. Kou ◽  
K.Y. Leung

Objectives: To investigate how the introduction of noninvasive prenatal testing (NIPT) influenced women's testing choices following a positive Down syndrome screening. Methods: A retrospective study was conducted to compare differences in the uptake rates of invasive prenatal diagnosis (IPD) or no testing in one public hospital 1 year before (pre-NIPT) and 1 and 2 years after the introduction of NIPT in private in August 2011 using descriptive analysis and a χ2 test. Conventional screening was funded publicly, but NIPT was not. Multivariable binary logistic regression was used to determine factors affecting choices. Results: In pre-NIPT and in years 1 and 2 after the introduction of NIPT, 306, 362 and 401 women who screened positive were seen, respectively. In year 1 and year 2, 12.6 and 26.7% of them underwent NIPT while IPD was decreased by 16.3 and 25.6%, respectively (p < 0.001). Both chorionic villus sampling and amniocentesis decreased in year 1, but only the former in year 2. However, the rate of declining further testing was similar before and after NIPT (p = 0.213). In multivariable analysis, first trimester screening, nulliparity and working women were significant predictors of accepting NIPT, while only nulliparity was a predictor of declining IPD (OR = 0.61). Conclusions: Introduction of NIPT resulted in a significant decrease in IPD for 2 consecutive years.


2020 ◽  
Vol 32 (2) ◽  
pp. 93
Author(s):  
Aikaterini Katsiana ◽  
Nikolaos Strimpakos ◽  
Ventoulis Ioannis ◽  
Eleni Sofologi ◽  
Eleni Bonti ◽  
...  

2018 ◽  
Vol 73 (5) ◽  
pp. 269-270
Author(s):  
Melissa Hill ◽  
Angela Barrett ◽  
Mahesh Choolani ◽  
Celine Lewis ◽  
Jane Fisher ◽  
...  

2021 ◽  
pp. 31-66
Author(s):  
Alison Piepmeier ◽  
George Estreich ◽  
Rachel Adams

This chapter examines the limitations of feminist discussions about disability and reproduction. Feminism and disability rights often hold different places in reproductive justice discussions. Feminism often oversimplifies the idea of reproductive choice, focusing on individual women and endorsing cultural stereotypes of disability. As a counterpoint to the scholarly literature of these issues, Alison Piepmeier interviewed twenty-nine parents of children with Down syndrome, asking them about their pregnancy, prenatal testing, and their families. The responses of these parents illustrate how families need more support than just individual rights to raise a child with a disability. Although reproductive decisions may rest on an individual woman, she must also consider community support and health services in her decision to raise a child, particularly one with a disability.


2016 ◽  
Vol 2016 ◽  
pp. 1-5 ◽  
Author(s):  
Biray Erturk ◽  
Emin Karaca ◽  
Ayca Aykut ◽  
Burak Durmaz ◽  
Ahmet Guler ◽  
...  

Background. Currently, the data available on the utility of miRNAs in noninvasive prenatal testing is insufficient in the literature. We evaluated the expression levels of 14 miRNAs located on chromosome 21 in maternal plasma and their utility in noninvasive prenatal testing of Down Syndrome.Method. A total of 56 patients underwent invasive prenatal testing; 23 cases were carrying Down Syndrome affected fetuses, and 33 control cases carrying unaffected, normal karyotype fetuses were included for comparison. Indications for invasive prenatal testing were advanced maternal age, increased risk of Down Syndrome in screening tests, and abnormal finding in the sonographic examination. In both the study and control groups, all the pregnant women were at 17th and 18th week of gestation. miRNA expression levels were measured using real-time RT-PCR.Results. Significantly increased maternal plasma levels of miR-3156 and miR-99a were found in the women carrying a fetus with Down Syndrome.Conclusion. Our results provide a basis for multicenter studies with larger sample groups and microRNA profiles, particularly with the microRNAs which were found to be variably expressed in our study. Through this clinical research, the utility of microRNAs in noninvasive prenatal testing can be better explored in future studies.


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