Qualitative study of evidence based leaflets in maternity care
BMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7338.639 (Published 16 March 2002) Cite this as: BMJ 2002;324:639All rapid responses
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Dear Editor
I would like to rectify a factual inaccuracy within MIDIRS' response
' Informed Choice or Informed Compliance?'
Contrary to the inference made within the text, the entire study was
not undertaken in Wales. Indeed, a significant part of this study was
carried out in England.
Sincere apologies for this inaccuracy and for any confusion incurred.
Competing interests: No competing interests
Dear Editor
Within the context of information giving, the MIDIRS Informed Choice
Initiative is widely recognised as innovative and groundbreaking. The
initiative aims to assist women to exercise informed choice by producing
summaries of the best available scientific evidence relating to discrete
areas of clinical practice in both pregnancy and childbirth.The leaflets
were designed by a graphic designer, were extensively piloted, were
awarded a Crystal Mark for plain English and are widely used throughout
healthcare Trusts in England. (The studies reported were carried out in
Wales).
The concept of informed choice although far from simple, is based on
some fundamental values:
a) Women have the right to information about their care and need to
be involved in decisions about their own bodies
b) Women are primary decision makers about what happens to them
during pregnancy and birth
Problems occur when there is a dearth of evidence on which to base
choices, or when, as is arguably more commonplace, evidence does not match
local policies or practice. Obstetricians continue to define the norms of
clinical practice, in essence paying lip service to the concept of
informed choice and limiting the choices available to women. This position
if further strengthened by women's inherent trust in health professionals,
which ensures conformity with professionally defined choices. The studies
showed that staff sometimes expressed antipathy for an option covered by
the leaflets to the extent that on some sites, women were denied access to
particular titles.Indeed, out of the thousands of women involved in the
study who could have received the ten leaflets, only 70% of women reported
receiving one of them.It was similarly noted that midwives rarely
discussed the contents of the leaflets or differentiated them from other
pregnancy-related information. This further masked the true potential of
Informed Choice leaflets in supporting informed decision-making.
The progression and ethos of maternity services and the litigious
nature of society has witnessed a divergence from acquiring client consent
to a more complex notion of informed choice (1). Within this culture, the
Informed Choice leaflets are unique because they are genuinely research
based and do not present the opinion of an individual or unit policy.The
leaflets do not seek to provide 'the answer' but they do present the facts
about what we do and don't know. They empower consumers by providing women
with high quality, succinct information with which to make informed
choices and they support practitioners in maintaining their knowledge of
the latest evidence base, thereby ensuring best practice.
However, whilst the Informed Choice Initiative provides a portal to
the evidence base, it should in no way detract from the onus placed on
health professionals to open up discussion, guide, and offer non-directive
support to women in making their own informed choices. These studies
highlight the cultural context for the provision of this information and
until this is challenged, the profession will continue to pay lip service
to 'informed choice' whilst sustaining a culture of 'informed compliance'.
Refs:
1. Kirkham M, Stapleton H eds. Informed choice in maternity care: an
evaluation of evidence based leaflets. York: NHS Centre for Reviews and
Dissemination, University of York, 2001.
Competing interests: No competing interests
The disappointing results in this qualitative study and the
randomised trial should not be attributed only to the setting
in which the leaflets were presented to the women and to the
suboptimal opportunities they had to discuss the contents
with professionals. It seems very likely that the design of
the leaflets played a major part. To learn from the results
of these important studies it is necessary to consider what
they were like and the process by which they were designed
and pilot-tested. The design process embraces not only
writing the text, but also the physical presentation -
including typography, layout, colour and illustration if
any. May I therefore ask the Sheffield authors to give us
these details,and tell us where the actual leaflets can be
found?
Information design is a professional skill that most health
professionals don't yet recognise or understand. We must
learn to use information designers.
Competing interests: No competing interests
Erasmus Darwin died 200 years ago this month; this is a quotation
from his publication, Zoonomia:
"Another thing very injurious to the child, is the tying and cutting
of the navel string too soon which should always be left not only until
the child has repeatedly breathed, but till all pulsations in the cord
cease. As otherwise the child is much weaker than it ought to be, a
portion of the blood being left in the placenta, which ought to have been
in the child."
Two hundred years later, NICU's are filled with anemic newborns, many
of whom require blood transfusion to keep them alive. Nearly every
preemie has its cord clamped immediately. The most common cause of
neonatal morbidity is respiratory distress syndrome, known under the name
of "shock lung" at any other age.
A fuller account of the injuries alluded to by Erasmus is available
at:
Erasmus Darwin's comment should be on every maternity informed
consent form, and every midwife and obstetrician should know it by heart.
G. M. Morley, M.B., Ch. B.
Competing interests: No competing interests
Congratulations to the midwives from Sheffield (1,2) for
demonstrating the excellent insight a qualitative study can provide when
coupled with a more controlled empirical investigation.
Both the studies and this weeks editorial (3), suggest that
inequalities in power and status in the maternity services have a greater
influence on what happens to women giving birth, than either their hopes
and dreams, or the choices they may feel informed to make.
These studies are a powerful reminder that the physiological birth
process, without some degree of technological interference and tampering,
is becoming a rare event, in danger of possibly becoming extinct. Midwives
are also portrayed in this hierarchical system as having little effect on
the outcome of care.
The authors suggest that where women are able to form a trusting
relationship with a midwife they get to know, they are more likely to ask
questions, and feel they can make choices about their care, rather than
simply being 'compliant'.
As members of a national consumer movement in Australia, we feel it
is a violation of human rights for women to continue to be subjected to
routine hospital maternity care that is demonstrably not backed by
research evidence on what is best for the majority of mothers and babies.
Far from being an illness, childbirth is a healthy, normal and
important event in women's lives. Women deserve to receive the model of
care backed by research evidence - one on one care from a known competent
midwife throughout pregnancy, birth and postnatally, with obstetric backup
for the minority (10-15%) of women who may need it.
And yet, for most of us now the opportunity to access this model of
care is unavailable. We believe this madness must stop, and implore all
women to seriously take heed of the options available to them and join
with other women to call for reforms to the maternity services in their
countries until all women have the choice of being cared for by their own
midwife.In Australia we have proposed a National Maternity Action Plan
www.communitymidwifery.iinet.net.au/nmap
to inform governments and policy makers of the need for change.
1. O'Cathain, A, Walters, S J, Nicholl, J P, Thomas, K J, Kirkham,
M (2002). Use of evidence based leaflets to promote informed choice in
maternity care: randomised controlled trial in everyday practice. BMJ
324: 643-643
2. Stapleton, H., Kirkham, M., Thomas, G. (2002). Qualitative study of
evidence based leaflets in maternity
care. BMJ 324: 639-639
3. EDITOR'S CHOICE Informed compliance. BMJ 2002 324: 0.
Competing interests: No competing interests
Editor,
Re: Compliant behaviour in the antenatal setting - Voluntariness and
prenatal screening.
In April 2001 the Public Health Minister, Yvette Cooper, announced
that from 2004 every pregnant woman in the country would be offered serum
screening for Down syndrome. Prenatal screening for Down syndrome has
largely developed as a consequence of advances in technology and the
presumption that the NHS would provide it as a health related service.
Whether or not the NHS should fund the mandatory offering of a test, (or
combination of tests), for this condition is questionable but not the main
issue here. What is perhaps more worrying is a second presumption - the
presumption of acceptance - an expectation of compliant behaviour.
Prenatal screening for Down syndrome is unusual as a medical service
in that’s its value does not lie in managing or curing illness but instead
in simply producing information that generates difficult choices for the
patient. The information required to make these decisions is complex and
technical, contrasting relative risks and involving terms and ideas which
are not part of the everyday experience of the woman. Despite an intended
neutrality the very act of offering Down syndrome screening, (be it serum
screening, nuchal translucency measurement or both), intrinsically puts
forth the assertion that possession of this knowledge will be beneficial
and empowering (1). In other words the potential damage of mandatory
offering is that the process of making the offer of a test can appear to
the mother to be compulsion. Women come to perceive screening for Down
syndrome as an integral part of antenatal care and feel a responsibility
to have it.
It was therefore with some interest but little surprise that I read
the related papers regarding informed choice in the maternity setting
(2,3), in the BMJ this week. I would agree with the assertions made by the
authors that in antenatal care we unintentionally promote ‘informed
compliance’. It may be that a fully informed choice is not possible in the
antenatal setting. An offer that is made under conditions that take
advantage of a woman’s vulnerabilities, when she is hoping for good care
and attention and does not want to be seen to disappoint her obstetrician,
midwife or general practitioner, does not respect her voluntariness. The
woman may fear covertly expressed suggestions of rejection by the
professional staff when she wants to be seen to be doing the best for her
baby. Her resistance is weakened by her desire for the complete antenatal
care package, (which is after all almost entirely organized around the
provision of prenatal screening tests – in itself a presumption of
acceptance).
Skrabanek(4), has suggested that screening can only be achieved
through coercion and deception and that it is invariably an infringement
of the patient’s personal liberty. Certainly in the antenatal setting
issues of voluntariness and informational manipulation are raised. The
decision as to whether or not to be screened should rest on knowledge of
potential benefits but remain free from social pressures and coercions.
The woman’s participation in the decision-making process and ultimate
decision regarding the administration of a screening test must be
voluntary yet how many simply acquiesce to meet the terms of the service
provided? The comments of Lord Justice Scott in Bowater v Rowley Regis
Corpn.(5) are relevant;
“a (wo)man cannot be said to be truly ”willing” unless (s)he is in a
position to choose freely, and freedom of choice predicates, not only full
knowledge of the circumstances on which the exercise of choice is
conditional, so that (s)he may be able to choose widely, but the absence
of any feeling of constraint so that nothing shall interfere with the
freedom of (her) will”
When considering issues of consent for prenatal screening most
concern themselves with adequacy of disclosure, the oft-(mis)quoted
concept of ‘informed consent’. It is, however, increasingly clear that
the real issue in this situation is whether or not the ‘informed’ choice
is freely made.
References
1. Hunt L. Routine Prenatal genetic screening in a Public Clinic: Informed
choice or moral imperative? Medical Humanities Report 22(2) Fall 2000.
www.bioethics.msu.edu/mhr/01w/prenatalscreening.htm
2. Stapleton H, Kirkham M & Thomas G. Qualitative study of
evidence based leaflets in maternity care. BMJ 2002; 324:639-43. (16 March
2002)
3. O’Cathain A, Walters SJ, Nicholl JP, & Kirkham M. Use of
evidence based leaflets to promote informed choice in maternity care:
randomised controlled trial in everyday practice. BMJ 2002; 324:643-6. (16
March 2002)
4. Skrabanek P. Preventive Medicine & Morality. Lancet 1986; Jan
18: 143.
5. Bowater v Rowley Regis Corpn. [1944] KB 476 at 479
Competing interests: No competing interests
Dr Livingstone has raised a number of interesting points in response
to our paper.1 Pressures of space meant that we were unable to describe
differences in clinical practice between professional groups. We disagree
with her assertion, however, that midwives and GPs are more likely than
obstetricians to apply a ‘normalist’ interpretation to interventions in
maternity care. Data from our research suggested that participants from
all groups of health professionals (Midwives, GPs, Ultrasonographers,
Anesthetists and Obstetricians) did not hold a unified undertanding of the
word ‘normal’. 2 Furthermore, during interviews participants offered
varied, and often conflicting, meanings for other terms which are widely
used in contemporary maternity care including risk, informed choice and
evidence-based care. With regard to GP participants in the study, the
small number who were directly involved in delivering antenatal care
appeared no more likely than other health professionals to offer women
evidenced-based information nor to assist them in making informed choices.
Sadly we collected data from a number of women who, despite a safe
outcome, had been removed from their GP patient list on account of having
persisted in their desire to give birth in their own homes.
Finally, we
did not intend to convey the impression that our research findings support
the concept of ‘obstetric’ decision-making, or indeed privilege ‘non-
interventionist obstetrics’ over other models of care. Our aim is to
encourage health professionals involved in providing maternity care to
engage in a model of decision-making which reflects all the available
evidence and which respects the specific and individualized needs of
childbearing women, their families and loved ones.
1 Stapleton H, Kikham M & Thomas G Qualitative study of evidence
based leaflets in maternity care BMJ 2002 324 639-
2 Kirkham M and Stapleton H (eds) Informed choice in maternity care: an
evaluation of evidence based leaflets. 2001 University of York: NHS Centre
for Reviews and Dissemination
Competing interests: No competing interests
Dear Editor
I welcome the papers on evidence based leaflets in maternity care
(1,2), really because of the way raise issues of pregnant women’s
involvement in obstetric decision making which affects their outcome, and
their origin primarily from midwifery departments.
A great deal of antenatal care in most areas takes place in the
community, and it is there that close links between the women, their
midwives and their longer term health care professionals general
practitioners (GPs) and often health visitors are made. Midwives and
general practitioners vary in their interpretation of evidence about
intervention in health care, but both through their clinical role in the
community are more likely to interpret them with an emphasis on the normal
than the specialist obstetrician. Unfortunately the articles did not
discuss the roles or perceptions of GPs and might reinforce prejudices
among other health professionals through generically labelling
obstetricians as doctors, rather than informing how we primary care
doctors can develop our role in the primary care team involving midwives
to be less directive and effectively support choice and safe non
interventionist obstetrics where appropriate.
It is clear leaflets alone don’t do the work.
Yours sincerely,
Anna Eleri Livingstone
General Practitioner and trainer
The Limehouse Practice Gill Street Health Centre London E14 8HQ
Anna.Livingstone@gp-f84054.nhs.uk
1. Stapleton H Kirkham M Thomas G Qualitative study of evidence based
leaflets in maternity care BMJ 2002 324 639-43
2. O’cathain A Walters SJ Nicholl JP Thomas KJ kirkham M Use of evidnce
based leaflets to promote informed schoice in maternity care:randomised
controlled trial in every day practice BMJ 2002 324 643-6
Competing interests: No competing interests
This paper highlights the fact that information provision is only one
of the necessary conditions, and not a sufficient condition, for informed
choice to be realised in the context of healthcare. Competence (of
patients to understand choices) voluntariness (freedom from constraints
and coercion)and decisionmaking (making an actual choice) are also
necessary. Most antenatal patients are obviously competent, but in the
context of pregnancy care in the UK it is doubtful whether any decision is
voluntary given the attitudes and behaviour of some staff described in
this study. In addition, patients are often not expected to make any
decisions, but as highlighted in this paper, are simply expected to comply
with the policy of the obstetric unit whatever that might be. It is not
suprising therefore that Stapleton et al found their leaflet made little
difference to the percentages of women reporting they made informed
choices.
Competing interests: No competing interests
evidence based leaflets in maternity care: design certainly does matter
We are in complete agreement with the points raised by Andrew
Herxheimer (1) regarding R&D processes involved in producing
information leaflets for use by NHS service users and providers. I am
confident, however that the leaflets we evaluated exceed both requirements
and expectations over a range of quality assurance and design indicators.
Sadly, as our research findings demonstrate, (2) despite using high
quality information and employing information technologists and graphic
designers in the production of these leaflets, they proved insufficient to
challenge the organizational barriers and cultural inertia in the
maternity services. The ten pairs of MIDIRS Informed Choice leaflets met
the following R&D criteria:
· The 10 leaflets, covering discrete topics on which childbearing
women would be expected to make decisions(3), were produced in pairs. One
leaflet was designed for use by childbearing women and the other for use
by the health professional providing maternity care. The women’s version
presents information in a clear and easy-to-read style whilst the health
professional’s version contains more detailed information and is fully
referenced. It was intended that the latter version would be made
available to women who wanted more detailed information.
· The leaflets were not intended solely for client use but also to bring
health professionals up to date with the best scientific evidence.
· The leaflets were not intended simply to be used as an authoritative
source of information; they were also intended to empower childbearing
women to challenge health professionals who were not offering evidence
based care
· The leaflets were awarded the Crystal kitemark award for English
· The leaflets received approval from the Royal Society for the Blind for
layout and design
· Consumer groups and other relevant organizations were involved in all
aspects of the R&D process
· The R&D process was a multi-professional enterprise and sought
contributions from health professionals likely to be most involved in
decision-making in relation to specific leaflet topics. They included
midwives, obstetricians, obstetric anesthetists and ultrasonographers.
· The leaflets underwent extensive piloting
· The leaflets were peer reviewed by a panel of international experts
· The evidence base of the leaflets was updated in 1999
More information about the Informed Choice leaflets, including plans
to expand the range of topics, is available on the MIDIRS website:
www.midirs.org
1.Evidence based leaflets in maternity care: their design matters
Andrew Herxheimer BMJ e-correspndence: 3 April 2002
2. Stapleton H, Kirkham M & Thomas G Qualitative Study of
evidence based leaflets in Maternity care BMJ 2002;324;639-
3. The Informed Choice leaflet topics: Support in Labour, Fetal heart
rate monitoring in labour, Ultrasound screening in the first half of
pregnancy, Alcohol and pregnancy, Positions in labour and delivery,
Epidurals for pain relief in labour, Breastfeeding or bottle feeding -
helping women to choose, Antenatal screening for congenital abnormalities,
Breech presentation, Place of Birth.
Competing interests: No competing interests