We identified three primary categories generating feelings of ambivalence among women: (1) factors related to genetic counseling; (2) environmental factors, and (3) increased anticipatory anxiety. Furthermore, the former two factors caused the anticipatory anxiety (Table.1, Fig.2).
Factors related to genetic counseling
This category Factors related to genetic counseling comprised two subcategories: “lack of information” and ”Lack of psychological care adapted to individual needs.” “Lack of information” further comprised two mid-level categories: “Inadequate support by medical staff up to taking NIPT” and “Lack of information in case of positive result.” “Lack of psychological care adapted to individual needs comprised “Lack of psychological care at genetic counseling,” and “Lack of genetic counseling at the appropriate moment.”
Regarding “Lack of information,” “support by medical staff up to taking NIPT” referred to the lack of support from the family physician during NIPT. Many family physicians were not only not helpful in referring their patient for genetic counseling, but they also themselves were unaware of it. Owing to the limited number of NIPT facilities for pregnant women in Japan, some respondents also reported receiving a reproachful response from their family physician upon requesting information regarding NIPT or referrals.
Furthermore, certain women were criticized for taking the NIPT during genetic counseling, and many women wished that genetic counseling would be performed assuming that NIPT could give positive results regarding “Lack of information in case of positive result.” They wished to receive detailed information regarding the methods of terminating their pregnancy as one of the alternatives in case of chromosomal abnormalities in the fetus.
I don't think it hurts to take some time to explain about the options for getting an artificial termination of pregnancy in the case of a positive result. There is this idea that an abortion＝bad, but if the chance that you can love your child unconditionally is 0%, then I believe that it is an important option, even though it's not easy to discuss...
(if the pregnancy was terminated)
However, some women who considered continuing their pregnancy despite receiving positive results upon NIPT were seeking information regarding the exact quality of life for individuals living with such illnesses and the social resources available for them.
What I really want to see added is what to do if the results do come out positive. I want to hear during the counseling session the exact types of social support that I could get if my child is born with Down syndrome or some other illness to help me live with and raise the child with the illness, for example at school, daycare, at home, names of organizations or municipal centers where I can get support.
(if the pregnancy was continued)
These data indicated that respondents were seeking information during genetic counseling that would support the decision to continue or terminate their pregnancy. These women desired information regarding the daily lives of children with disabilities and other related materials to guide their decision of whether they could raise a child with disabilities; furthermore, they desired follow-up support for women reporting with positive results in the NIPT.
Environmental factors included the comfort levels of women for raising a child with disabilities; this aspect comprised three subcategories: “Lack of awareness and education about diversity,” “Insecurities on raising the child,” and “Lack of social support systems for people with disabilities. “Insecurities on raising the child” comprised “Insecurities for the future,” “Vague insecurity,” “Insecurities for the child-rearing environment,” and “Familiarity with challenges of living with a disabled person.”
・・・The reason why many people have the image of prenatal testing as an "immoral thing" in Japan may come from views about ethics on this subject in Japan, or prejudice and closed-mindedness against people with Down syndrome and other chromosomal abnormalities. I just sometimes wish that those who are debating and giving their input on ethics would also take part in discussing how to change Japan into a more livable society for children with Down syndrome and their families.
(Lack of awareness and education about diversity)
I want to give birth even if child with Down syndrome, if possible ... The word “life sorting” is not good, but we feel that social systems are forced to do so. I think we must create a welfare, education and social system that everyone can give birth and raise without worrying, even if a child has a disability,
(Lack of social support systems for people with disabilities)
Regarding ”Insecurities on raising the child”, older parents had a sense of responsibility to raise the child; they were concerned regarding the life of the child after their death owing to their age at pregnancy, and they were concerned regarding burdening the siblings of the child and, thus, had “Insecurities for the future.”
Furthermore, certain respondents also exhibited “Vague insecurity” because raising a disabled child is unfathomable and difficult to imagine, owing to the lack of experience. Others, however, already had “Familiarity with challenges of living with a disabled person,” because they knew somebody or had family members with disabilities, thereby fostering the understanding of the merits and demerits and having discerned that it would be challenging. They also faced “Insecurities for the child-rearing environment” owing to their concern regarding an inadequate financial support or the social environment for raising a child with disabilities.
As an actual mother of a child with chromosomal abnormalities・・・I'm glad that I had my baby, but raising my child is full of challenges and would be absolutely impossible without the cooperation of people around me, so it's not something that can be glossed over. I got tested for my second pregnancy, but I don't think I would've had the child if the results were positive
(Familiarity with challenges of living with a person with disabilities).
Increased anticipatory anxiety
Increased anticipatory anxiety included the two subcategories ”Time-related anxiety” and “Anxiety about test accuracy.” Among the pregnant women who opted for NIPT, there were some who were so anxious during the two weeks until they got the results that they could not sleep until finding out that their results were not positive. Also, knowing that test accuracy of NIPT was not 100%, some people were anxious that their result might be a false-negative, and they could not eliminate this anxiety until the birth of the child.
Ambivalent feeling comprised five subcategories: ”Options in the case of a positive result,” “Guilt towards the child,” “Criticisms on NIPT from others,” “Denial of disabled people, and “How to tell the child.”
Some respondents “Stated their decision” with regard to the course of action in case of a positive NIPT result, whereas others expressed “Difficulty stating their decision” regarding continuing or terminating their pregnancy. In both cases, respondents seemed agonized over their decision in the case of positive results (Fig. 3).
I had decided that if the results came out positive, I would not give birth to the baby. However, even though I now know that the results were negative, I haven't told my own parents that I took the test. At the same time that I feel negative about the idea that we were picking and choosing who to keep if the results were positive, I also blame myself for my lack of confidence in raising the child, even though it is because I have health problems myself.
(Stated their decision)
Some women seemed to have a sense of “Guilt towards the child” after given birth and parenting the child, knowing that they were trying decide the life of the child.
I don't think I would have taken the test if I were younger. Some people criticize that people take the test too casually because it places very little stress on the mother or child. But I believe that anybody who chose to take the test did so after putting lots of thought into it. Looking into my child's face, sometimes I remember about when I took the test, and I can't help feeling sorry towards my child. My baby's life is very valuable, and I want to give all the love it deserves.
(Guilt towards the child)
Furthermore, some women could not tell anybody that they took the NIPT owing to social pressure ”Criticisms from others on NIPT”, and others who felt guilty that having ”Denial of disabled people” upon having children with disorders, which were screened during NIPT, despite obtaining negative NIPT results.
When I watch documentaries on TV, etc., and hear that the majority of opinions seem to support that “Whether or not a life should live should not be decided by parents, but should be treated as an independent life” “Even if my child has Down syndrome, I am so happy that they came to this world”. People who, for whatever reason decided not to have the baby, will be burdened with guilt for the rest of their lives. I did test negative, but whenever I look into my child's face and see a person with Down syndrome, I criticize myself because “I decided on her life.”
(Denial of disabled people)