"Decision Making Following a Prenatal Diagnosis of Down Syndrome: An Integrative Review", Choi et al 2012 https://dl.dropboxusercontent.com/u/5317066/2012-choi.pdf / http://libgen.org/scimag/get.php?doi=10.1111%2Fj.1542-2011.2011.00109.x ; excerpts:
"Prenatal screening for Down syndrome (DS) is a routine part of prenatal care in many countries, and there is growing interest in the choices women make following a prenatal diagnosis of DS. This review describes what is known about actual and hypothetical decision making...A total of 11 studies were identified that met the inclusion criteria. The decision to undergo an induced abortion varied depending on whether participants were prospective parents recruited from the general population (23%-33% would terminate), pregnant women at increased risk for having a child with DS (46%-86% would terminate), or women who received a positive diagnosis of DS during the prenatal period (89%97% terminated). Multiple factors influence women’s decision making following a diagnosis of DS, including demographic factors such as religion, maternal age, gestational age, number of existing children, and history of induced abortion. Psychosocial factors including perceived parenting burden/reward, quality of life for a child with DS, attitudes toward and comfort with individuals with disabilities, and support from others also are important influences.
Rates of induced abortion (often referred to as termination rates in earlier articles) vary across types of conditions and cultures. According to the review of 20 published studies by Mansfield et al, 15 DS has the highest average rate of induced abortion (92%) when compared to other conditions such as spina bifida, anencephaly, Turner syndrome, and Klinefelter syndrome in European countries and in the United States. 15 Women’s responses to induced abortions also vary. Some women who underwent induced abortions due to fetal abnormalities had an increased risk for short-term 16 – 19 (up to 1 year) and long-term 20 – 22 (2-7 years) psychological morbidity such as posttraumatic symptoms and/or depression. In particular, women who experienced more difficulty, ambivalence, or doubt with their decision to terminate their
With respect to the quality of the studies included in this review, we included studies published in peer-reviewed journals only. Thus, all of the studies we reviewed have met some type of quality standard.
[Epic fail! They're biased by other standards too...]
In a study of pregnant women from the United States (N = 142) who tested positive for DS, 90% made a decision to terminate the pregnancy, 32 while in a similar study of pregnant women in Uruguay, 89% decided on termination of pregnancy (n = 207). 34 In the study conducted by Zlotogora 35 in Israel, 96.8% of the Jewish women (n = 510) terminated their pregnancies due to DS, whereas 89.2% of the Arab women (n = 74) chose to terminate. The rate of termination was also different based on the type of diagnostic test. For example, in both groups of women (Jewish and Arab), all women (100%) who tested positive for DS through chorionic villus sampling chose to terminate. However, following a positive diagnosis of DS via amniocentesis, 96.6% of Jewish women and 88.7% of Arab women chose to terminate. 35
Five studies reported on the perceived burden of caring for a child with DS. 26 – 28,31,33 Among 78 women who had a sibling with DS, 56% of the 42 women who indicated they would probably or definitely undergo diagnostic testing indicated that they would do so because they would terminate a DS pregnancy. 26 They went on to indicate that their reason for terminating a DS pregnancy was that having a sibling with DS had a negative impact on themselves and their families. On the other hand, 27% of the women who indicated they would probably or definitely undergo diagnostic testing said they would not consider terminating a DS pregnancy but wanted to be prepared for the birth of a baby with DS if the test results were positive. The remaining 17% indicated that they wanted diagnostic testing because in the event of positive results, they would make their decisions to continue or terminate the pregnancy based on their current circumstances and their partners’ wishes. 26
In the study by Roberts et al, 31 95.7% of participating women expected an increased burden in their roles as primary caregivers, and 60.9% who said they would choose termination of pregnancy attributed that decision to the anticipated increased parenting burden. In the same vein, Korenromp et al 33 reported that more than half of 71 women who received a positive diagnosis of DS during the prenatal period and chose termination of pregnancy indicated the following reasons for that decision: the burden for themselves (64%), the burden for other siblings (73%), their relationship (55%), disfavor of having a disabled child (63%), and unhappiness with having this newborn (61%).
In contrast to perceptions of burdens, 2 studies done by Lawson 27,28 highlighted perceptions of parenting reward from caring for a child with DS as a significant factor by which prospective parents may be influenced. Participants who perceived more personal reward and personal enrichment from parenting a child with DS were less likely to choose to undergo an induced abortion due to DS. In addition, those who were more familiar with individuals with DS perceived more parenting reward and were less favorable to choosing an induced abortion due to DS. The relationship between quality of prior contacts with individuals with DS and willingness to terminate a DS pregnancy was partially mediated by perceptions of parenting rewards from caring for a child with DS. 28
Because the findings of this review are based on a relatively small number of studies, it is important to mention the limitations of these studies. Sample size varied from 78 to 1467. Only 1 study justified the sample size. 31 In some of the studies reviewed, the measures used did not have strong psychometric properties. Only 2 studies used a guiding framework 28 or an analytic technique for chart review. 32 In addition, the rate of induced abortion due to DS in hypothetical situations may be different from that of an actual decision in relation to carrying a fetus affected by disabilities (including DS). Thus, caution must be used when comparing these rates. Moreover, the decision making of women living in countries where induced abortion is legal may be different from the decision making of those in countries where induced abortion is illegal. Therefore, different cultural backgrounds also should be taken into account, and thus these findings may not be generalizable to all populations"
"Prenatal screening for Down syndrome (DS) is a routine part of prenatal care in many countries, and there is growing interest in the choices women make following a prenatal diagnosis of DS. This review describes what is known about actual and hypothetical decision making...A total of 11 studies were identified that met the inclusion criteria. The decision to undergo an induced abortion varied depending on whether participants were prospective parents recruited from the general population (23%-33% would terminate), pregnant women at increased risk for having a child with DS (46%-86% would terminate), or women who received a positive diagnosis of DS during the prenatal period (89%97% terminated). Multiple factors influence women’s decision making following a diagnosis of DS, including demographic factors such as religion, maternal age, gestational age, number of existing children, and history of induced abortion. Psychosocial factors including perceived parenting burden/reward, quality of life for a child with DS, attitudes toward and comfort with individuals with disabilities, and support from others also are important influences.
Rates of induced abortion (often referred to as termination rates in earlier articles) vary across types of conditions and cultures. According to the review of 20 published studies by Mansfield et al, 15 DS has the highest average rate of induced abortion (92%) when compared to other conditions such as spina bifida, anencephaly, Turner syndrome, and Klinefelter syndrome in European countries and in the United States. 15 Women’s responses to induced abortions also vary. Some women who underwent induced abortions due to fetal abnormalities had an increased risk for short-term 16 – 19 (up to 1 year) and long-term 20 – 22 (2-7 years) psychological morbidity such as posttraumatic symptoms and/or depression. In particular, women who experienced more difficulty, ambivalence, or doubt with their decision to terminate their
With respect to the quality of the studies included in this review, we included studies published in peer-reviewed journals only. Thus, all of the studies we reviewed have met some type of quality standard.
[Epic fail! They're biased by other standards too...]
In a study of pregnant women from the United States (N = 142) who tested positive for DS, 90% made a decision to terminate the pregnancy, 32 while in a similar study of pregnant women in Uruguay, 89% decided on termination of pregnancy (n = 207). 34 In the study conducted by Zlotogora 35 in Israel, 96.8% of the Jewish women (n = 510) terminated their pregnancies due to DS, whereas 89.2% of the Arab women (n = 74) chose to terminate. The rate of termination was also different based on the type of diagnostic test. For example, in both groups of women (Jewish and Arab), all women (100%) who tested positive for DS through chorionic villus sampling chose to terminate. However, following a positive diagnosis of DS via amniocentesis, 96.6% of Jewish women and 88.7% of Arab women chose to terminate. 35
Five studies reported on the perceived burden of caring for a child with DS. 26 – 28,31,33 Among 78 women who had a sibling with DS, 56% of the 42 women who indicated they would probably or definitely undergo diagnostic testing indicated that they would do so because they would terminate a DS pregnancy. 26 They went on to indicate that their reason for terminating a DS pregnancy was that having a sibling with DS had a negative impact on themselves and their families. On the other hand, 27% of the women who indicated they would probably or definitely undergo diagnostic testing said they would not consider terminating a DS pregnancy but wanted to be prepared for the birth of a baby with DS if the test results were positive. The remaining 17% indicated that they wanted diagnostic testing because in the event of positive results, they would make their decisions to continue or terminate the pregnancy based on their current circumstances and their partners’ wishes. 26
In the study by Roberts et al, 31 95.7% of participating women expected an increased burden in their roles as primary caregivers, and 60.9% who said they would choose termination of pregnancy attributed that decision to the anticipated increased parenting burden. In the same vein, Korenromp et al 33 reported that more than half of 71 women who received a positive diagnosis of DS during the prenatal period and chose termination of pregnancy indicated the following reasons for that decision: the burden for themselves (64%), the burden for other siblings (73%), their relationship (55%), disfavor of having a disabled child (63%), and unhappiness with having this newborn (61%).
In contrast to perceptions of burdens, 2 studies done by Lawson 27,28 highlighted perceptions of parenting reward from caring for a child with DS as a significant factor by which prospective parents may be influenced. Participants who perceived more personal reward and personal enrichment from parenting a child with DS were less likely to choose to undergo an induced abortion due to DS. In addition, those who were more familiar with individuals with DS perceived more parenting reward and were less favorable to choosing an induced abortion due to DS. The relationship between quality of prior contacts with individuals with DS and willingness to terminate a DS pregnancy was partially mediated by perceptions of parenting rewards from caring for a child with DS. 28
Because the findings of this review are based on a relatively small number of studies, it is important to mention the limitations of these studies. Sample size varied from 78 to 1467. Only 1 study justified the sample size. 31 In some of the studies reviewed, the measures used did not have strong psychometric properties. Only 2 studies used a guiding framework 28 or an analytic technique for chart review. 32 In addition, the rate of induced abortion due to DS in hypothetical situations may be different from that of an actual decision in relation to carrying a fetus affected by disabilities (including DS). Thus, caution must be used when comparing these rates. Moreover, the decision making of women living in countries where induced abortion is legal may be different from the decision making of those in countries where induced abortion is illegal. Therefore, different cultural backgrounds also should be taken into account, and thus these findings may not be generalizable to all populations"
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