Biomedical Engineering Reference
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false. We particularly want to discuss some central themes that emerge in the
analysis of the women's accounts.
First, as we have seen, the women found it diffi cult to understand the
information on high risk and to transform a test result to the level of their
own individual life. It was thus diffi cult to assimilate the result as normal
or not normal, and the women tended to rather oscillate between the poles
of the perceived dichotomy of normality and abnormality, or make the
abnormality their hypothesis. These understandings are in line with how
lay representations of risk have been described as binary, which has been
discussed also in another study of nuchal translucency screening for Down
syndrome (Baillie
et al
. 2000). We would argue that this screening for Down
syndrome, however, confronts the women not only with risk information
that is diffi cult to interpret, but also, and immediately, with the profound
and diffi cult question of giving birth to a disabled child or terminating the
pregnancy and what that would mean in the context of their family lives.
Second, the women describe a process that they go through, starting
with the expectation of a normal pregnancy that is interrupted by the
unexpected high risk information after the ultrasound screening. The high
risk information introduces a sudden shift from a routine examination of a
'normal pregnancy' to a high risk pregnancy. The women have to make sense
of this sudden shift, and struggle to understand and assimilate the meaning
of the high risk information. In this process, various future scenarios emerge,
scenarios that revolve around quite dramatic issues such as a termination
of the pregnancy or a future life with a disabled child. The offer of this
screening, similar to other offers of prenatal tests, forces the woman to refl ect
on the very concrete options of an abortion or a version of motherhood that
she had not expected.
The sudden shift to a high risk pregnancy is followed by the process
of trying to return to a normal pregnancy. After the invasive tests and
confi rmation of normality, some women re-assess the high risk information as
something 'positive' that has made them feel even more humble and grateful
for their healthy baby. To them, the relief after confi rmation of normality
is depicted as returning to a normal pregnancy and a motherhood that is
even more valued. To others, the diffi culties after the high risk information
have remained, and they say that they have not been able to return to a
normal pregnancy. The 'returning' to a normal pregnancy is thus a complex
process, not easily accomplished by all women. Interestingly, the efforts
to detect abnormality by screening for Down syndrome are basically not
questioned in these women's stories. Even after the 'shock' of the high risk
information, the diffi culties in understanding the risk fi gure and refl ections
on quite diffi cult future scenarios - which turned out to be based on a false
outcome - most, but not all, women still argue that it was a 'good thing'
to have had this information. To talk about these diffi cult experiences as
something 'good' can in more psychological terms be interpreted as a way to
handle a dilemma: 'what is, must be best' (Porter and Macintyre 1984; Van
