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Information
Resource Library
Ante Natal diagnosis |
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Information
giving and decision making in ante-natal screening
By Joanie Dimivicius
Introduction
What follows is the text of a paper given at a conference
organised by Pro-Choice Forum called 'Issues in Pregnancy
Counselling: What do Women Need and Want?' The conference
was held at Ruskin College, Oxford in May 1997. It's aim was
to give students, academics, service providers and others
interested in ensuring pregnancy services meet women's needs,
the opportunity for a critical discussion of the provision
of counselling as part of these services.
Joanie Dimivicius
Support Around Termination for Abnormality (SATFA) is the
only national charity which supports parents through antenatal
testing, with decision making when an abnormality is diagnosed
in their unborn baby and provides continued support to those
parents who chose to end the pregnancy. SATFA is a non-directive
charity, there to help parents arrive at the most appropriate
decisions for their family, through the provision of information
and support. SATFA is not a counselling organisation.
By the time parents come into the health care system they
may have already made or contemplated many changes in their
lives. They may have changed their lifestyle; be planning
to change where they live; or changing how they live, for
example living on a tighter budget. The pregnancy is something
in which they have invested time, emotion and perhaps money.
Parents may think: 'After two years of trying for a baby we
were expecting you. From the moment the doctor said the test
was positive you were loved and wanted.' Each pregnancy has
its own significance for parents, and health professionals
cannot be expected to know its meaning. Bourne and Lewis (1989)
suggest that even when pregnancy is passionately desired the
impulses and ideas involved are complicated and ambivalent.
For some women their obstetric history will also be crucial
to the pregnancy: 'I was overjoyed at being pregnant again
and felt at last that I was free of the shadow of a previous
miscarriage.' But when the health of the baby is challenged,
through the antenatal testing process, it is important for
health professionals to try to ascertain and understand the
significance of the pregnancy. 'Some of the gravest disturbance
comes from the collapse of a system of hopes and values in
which the birth of the baby is paramount.' (Lewis and Bourne
1989).
All women are now offered some form of screening in pregnancy,
to determine if they are at sufficiently high risk of a particular
disorder to warrant a diagnostic procedure such as amniocentesis
or chorionic villus sampling. It is very clear that women
who have screening or testing in pregnancy seek reassurance:
they want to be told everything is okay with their baby, not
to be told that there is a problem with the baby. Even those
parents who have a genetic disorder which presents as a risk
of 1:2 or 1:4 of carrying an affected child in each pregnancy
have prenatal diagnosis to confirm the health of their unborn
baby.
Farrant (1985) and Green, Snowdon and Statham (1993) have
argued that it is important for service providers to appreciate
the implications of this: women's need for reassurance versus
the health care process which is to diagnose abnormality.
This is evidenced in the language for example, 'screen positive'
and 'screen negative' which can be a cause of confusion for
parents.
No tests should be presented as routine, all women should
make an informed decision to opt in to antenatal testing.
If this happens and, as part of the pre-test 'counselling'
process, it is understood that the purpose of antenatal testing
is to detect foetal abnormality then issues such as language
and terminology can be discussed and some of the confusion
and distress may be avoided.
The task of antenatal screening is to inform people fully
about the low probability, but possibility of serious events
without alarming them unduly or reassuring them falsely. It
is a monumental task which may be easier if broken down into
women's need for information, choice and support.
That may sound simple and even obvious but providing sound
information, enabling clear choices and providing effective
support is a difficult and complex process which requires
skills that many staff may not have had the opportunity to
develop. Parents need clear, accessible information presented
to them in a way which enables them to make choices which
are appropriate to them. They need time to assimilate that
information, and they need staff who are able to offer them
both practical and emotional support.
Antenatal screening and the detection of foetal abnormality
is intended to increase the reproductive choices available
to women. The consequence of increased choice however is that
pregnant women face many difficult and complex decisions.
It is well documented that health professionals underestimate
the patient's needs for information and their ability to understand
this information (Ley 1988). This may be because health professionals
fear that providing too much information will actually make
patients anxious. In contrast research shows that information
has an anxiety reducing effect or no effect on anxiety.
If a woman is to make informed decisions, for example to opt
in to antenatal testing or to have a diagnostic procedure,
she will need information which is accurate. She will need
information about the condition, about her own prior risk,
the practical details of the test, what it involves, what
it can detect and what it cannot detect and how when and where
results will be given. The meaning of false positives and
negatives should be explained, together with the details of
what happens next, what choices are available to parents and
where they can find further information if that is what they
need.
This is a large amount of information which cannot be absorbed
in one session. It will take time and there may be a need
for follow up consultations if a woman is to be fully informed.
Such consultations should be supported by written material
as it is inevitable that it cannot all be remembered accurately.
Time and skill are required to provide women with all of the
information they need to make informed choices about antenatal
testing. Even if presented well, screening can set in motion
a series of events and choices, which in hindsight some women
would rather have avoided.
Many parents will seek information from a variety of sources
and therefore information provided to them needs to be consistent.
There should be co-ordination between hospitals, GPs and community
health workers so that when parents seek information from
other health professionals they are not further confused.
All staff need to be familiar with the conditions which are
to be screened for. Full, detailed knowledge is not necessary
for all staff, but familiarity with the condition is. It can
only add to the sense of bewilderment and isolation a parents
feels when a member of staff says that they have never heard
of Edward's syndrome for example, or says to the parent that
it is a rare occurrence in their hospital. Whilst this may
be so, it is important always to contextualise the information.
A multi-disciplinary team approach is essential. The team
may vary but should, at least, comprise midwives, obstetricians,
paediatricians, geneticists, surgeons and have access to support
and disability organisations. It is very rare that one health
professional can meet both the emotional and information needs
of parents.
Research by Smith, Shaw and Marteau (1994) shows that often
in antenatal screening, information about the practical aspects
of the test is emphasised, whereas information about the likelihood
and implications of possible results which indicate abnormality
is rarely given. Parents feel: 'My 'what ifs' were not acknowledged.
Everyone else had the test and a healthy baby.' Many women
approach SATFA whilst waiting for the results of amniocentesis.
Although distressing, they wish to talk about their options
if the baby is diagnosed as having an abnormality: ' What
if my baby has Down's syndrome? What will happen? What are
my choices? Can I begin to talk about having a termination
of pregnancy? What does it involve?'
Health professionals can be reluctant to address these issues
with parents. This may be because there is a higher probability
of a negative test result than a positive one. 1: 20 of all
women who have serum screening will come back as screen positive,
of those 1: 70 will have an affected baby. It is difficult
talking about the process of a termination to a woman who
is 18 weeks pregnant and whose baby is probably unaffected.
However, having told a woman that she is of sufficiently high
risk of a particular condition to warrant an invasive procedure,
with the attendant risk of miscarriage, there is then a duty
to provide her with all the information she needs, including
addressing sensitive issues such as the means of termination.
Providing women with information also provides them with some
control.
If information is presented in a way which is non-judgmental,
non-directive and clear it will enable parents to make choices
which are appropriate to them; for example to have a diagnostic
test with its attendant risk of miscarriage of a healthy baby
and to continue with or terminate the pregnancy once an abnormality
has been diagnosed.
Those present at the Third European Meeting on the Psychosocial
Aspects of Genetics (1992) however, voted by a narrow majority
that non-directive counselling was not achievable in practice.
This is partly because the 'counsellor' comes to the session
with her own cultural background, value systems, personality
and life experiences. She may have conscious or unconscious
views about an appropriate decision and course of action and
these may influence her words in describing choices, conditions,
tests and probabilities.
Yet just as health professionals bring their own value judgements
and life experiences and expectations to the process so do
parents; their hopes, expectations and aspirations for the
child to be, a past history and a set of beliefs which are
relevant to the decision they must make. The role of the 'counsellor'
be she midwife, obstetrician, doctor is to be a reliable informer
and facilitator who works within the life-plan, hopes and
expectations held by the parents.
References
Ley P. (1988) Communicating with Patients, London: Croom Helm.
Lewis E. and Bourne S. (1989) 'Perinatal Death', Balliere's
Clinical and Obstetrics and Gynaecology, Vol. 3, No 4, 935-953
Farrant W. (1985) 'Who's for amniocentesis? The politics prenatal
screening', in The Sexual Politics of Reproduction, (ed. H
Homans), Gower, London
Green J.M., Snowdon C. and Statham, H. (1993) 'Pregnant women's
attitudes to abortion and prenatal screening', Journal of
Reproductive and Infant Psychology, 11, 3-39
Smith K.D., Shaw R.W. and Marteau T.M. (1994) 'Informed consent
to undergo serum screening for Down's syndrome: the gap between
policy and practice', BMJ, Vol. 309 |
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