Royal Society of Medicine Forum: Ethnic and cultural difference: implications for maternity care.
This is a report of a meeting of the Forum on Maternity and the Newborn of the Royal Society of Medicine, held on Thursday 25th September 2003. The meeting was chaired by Eugene Oteng-Ntim, Senior Registrar and Perinatal Fellow, Chelsea & Westminster Hospital, London.
The report is to be published in The Midwives Journal of the Royal College of Midwives. It is reproduced here with their consent and our thanks.
A Cross-Cultural View of Birth
From Sheila Kitzinger (SK), Social anthropologist.
Other birth cultures are often discussed in terms of how they differ from the norm. Their practices and beliefs should be food for thought for care-givers in modern hospitals. Yet the technocratic model of birth is an aberration from the social model that is traditional in diverse cultures, as it has been historically in the West too.
Creation is a sacred act linking human beings to the ancestors and the gods, and reminding us that we are part of the tree of life, and it is widely believed that birth only goes well when spiritual elements are acknowledged. Each birth is also a social process that draws together and integrates women in the community, and through them the entire neighbourhood. It takes place in a domestic setting, in space controlled by women, who are the main or sole care-givers. The exclusion of men often has the force of taboo.
The midwife is one of a group of women companions who come together for the birth to sustain and nurture the mother, and knowledge is shared. The midwife orchestrates the drama of birth. Her role is many sided, providing her empirical skills, shepherding the baby from the world of the ancestors to that of the living community, and guiding the woman over the bridge to motherhood, able to accept responsibility for a new life.
In medieval times the friends and neighbours called in to help at a birth were known as God's Sibs, literally sisters in God. Men left the house, later to coin the word "gossips". However the Nativity story has Mary without woman to woman support when giving birth to Jesus. 13th century altar paintings clearly show Joseph out of place in the scene; others show Mary supported by women or angels. Birth was celebrated as a peak experience in the life of the family, but above all in the world of women. It strengthened the bonds between women and between families, and in early America Turnabout Help was devised by women in neighbouring farms, knowing that they in their turns would provide and receive help at a birth.
The advent of wealth seemed to require the menfolk to spend money on their birthing wives and this meant retaining medical men, for status. Obstetrics became the ticket for these general practitioners to build up their practices. There would be one woman assistant and the husband might be called in.
Much research has been devoted to birth positions and has neglected movement. The upright posture is known to reduce pain and make for an efficient labour while increasing blood flow through the placenta. Often and in very far flung communities a rope or equivalent has been provided for a woman to pull on. Midwives have used their own bodies to cradle a woman in labour and rock with her. Birth is a dance, midwives synchronising their movements with those of the mother, rendering the contractions more efficient and promoting the descent and rotation of the baby's head.
When the barber surgeons involved themselves with birth in the 17th century they exercised a detached curiosity about the location, morphology, and function of the female organs. They devised their instruments, for the dismemberment of a dead or obstructing fetus or its baptism as it died; for caesarian section to deliver the baby of a dead mother, and dilators to force the cervix open. Chamberlen, the inventor in 1720 of the obstetric forceps, would use the instrument for the delivery of live babies under a sheet with the mother blindfolded. Women, the midwife among them, were excluded.
Dr. William Smellie (1697-1763), teacher of the first student accoucheurs in Scotland, attended births in women's clothing with his alarming instruments hidden under the skirts, so as to be acceptable to the women present. Midwives have always used massage, and touch with which to diagnose, manipulate, and comfort. The Japanese word for midwife literally means the massaging lady. While the male doctors also used touch for manipulation and diagnosis, they took pains to avoid being detected looking at the female genitalia. They used the technology of weights and pulleys in conjunction with the obstetric forceps to apply forceful traction to the baby's head, sometimes getting the mother herself to add to their pulling power.
The tendency in the West is to help other ethnic groups to adapt to our methods, ignoring the fact, born out by historical review, that it is our culture of birth which is the aberration. Advocating routine episiotomy and forceps delivery for all births, Dr Joseph de Lee of Chicago denounced midwives as relics of barbarism. Even spontaneous births were conducted with the mother supine in the lithotomy position, the baby appearing through a space in the drapes which covered much of the her body. The obstetrician laid claim to his sterile field, though it was neither his nor sterile. Some American practice included restraining the mother's arms, so preventing her from touching her newborn baby. Alone with the professionals , she became faceless, desexed and depersonalised.
In cultures world-wide midwives are specialists in touch. Touch is used in medicalised birth too, but in contrasting ways and conveying a different message. When sophisticated technology is employed, touch may not take place at all, and machines replace the human hand.
Working conditions and staff shortages in hospital maternity units severely limit the possibility of providing adequate care for women in labour. This is aggravated by lack of privacy and unfamiliar personnel, limits on women's autonomy and freedom of movement. Ours is the technology of control: induction and augmentation of labour, with time based decisions on termination of the first or second stage of labour and resort to caesarian section or other instrumental delivery. The positions occupied by the personnel present are determined by a pecking order - the obstetrician at the mother's lower end, her perineum brightly lit, junior members at her side, the father or other companion by her head. The trend to humanising the birthing room in the West has not altered these positions of power and submission, the woman harpooned by the electronic monitor and trussed up like an oven-ready turkey. If her dura mater is pierced during the induction of epidural analgesia she may be obliged to lie flat on her back in severe head pain, barely able to bond with her baby. Women are systematically trained, if unintentionally, to distrust their bodies and surrender responsibility for them.
We need to rediscover the power of women's bodies to achieve uncomplicated birth, the support that women can give each other in childbirth, and the vital importance of the skilled midwife who is a specialist in physiological birth. Traditional communities relate the rhythms of birth to sunrise and sunset or to household and communal activities; there is a real value in social childbirth if we can recreate it in modern conditions, discovering what is relevant to our own society. Knowing as we do that continuous woman-to-woman care in labour reduces the need for major interventions in the natural process, we must recover this invaluable resource probably in the doula movement. Untether the mother from the machine, find the birth dance afresh, and let women move at will again. Teach our midwives to be, as in traditional cultures, the one who hold, cradles, touches, massages, nurtures and sustains, and revalue these precious midwifery skills.
Beating about the bush: practical lessons in appropriate maternity care from a Central African context
From Sally Stockley (SS), Independent midwife.
In order to learn how best to serve the needs of any particular ethnic or cultural group, it is necessary above all to listen to the people belonging to that group. In the case of maternity care, in Central Africa as elsewhere, this entails listening to women, their extended families, and the traditional midwives or other healers local to the area, as well as to official health policy makers, health care workers including 'modern trained' midwives, and those who devise curricula amongst others. It is not possible to provide appropriate maternity care without also understanding as much as possible about the local environment, such as geography, food, infrastructure, and economic activity, as well as language, customs, ways of thought and ways of being.
I question whether the World Health Organization, and other groups involved in the global Safe Motherhood Initiative or similar, are approaching the problem of reducing maternal mortality in the most appropriate way.
Although what I have to say may not be original, I cannot overstress its universal importance. I became a midwife after taking a degree in the history of Africa, and for many years I have run a self-help group in the Suffolk village where I live for women who are having their pregnancy care in the national system; the purpose of this is to give them strength, to enable them to make their own choices and for couples to be in control of their births. This is where, attending many labours, I learned to listen to women and learned the basic physiology of birth better than in my midwifery training. Becoming an independent midwife has enabled me to treat women as individuals, which for lack of time is no easy matter within the system. Time spent one to one with women in labour reduces obstetric interventions; the responsibility is shared, and many of the women regarded as of high risk deliver normally to the benefit of their health, and cost is reduced within the system.
I will describe a project with which I am involved in Uganda. Our methods differ from those which hitherto have interested ministries of health, global organisations, and NGOs. My objective has been to combine and integrate modern and traditional maternity care, and if this were to be possible, by example to reduce maternal and neonatal mortality and morbidity worldwide; maternal deaths currently approach 600,000 annually, most of them avoidable. The countries of the West are remarkably unwilling to share their wealth with the the poor of the world; the United Nations Development Programme reports that in recent years the poor have become poorer while the West has accrued more wealth. The implications for the care of the pregnant are huge, and this is very apparent in Uganda.A small country in sub-Saharan Africa, Uganda has a population of about 23 million. A civil war which destroyed much of the infrastructure of the country officially ended in 1987, but fighting at the borders has continued. There has been a substantial recovery under the present government, and among other services health has been effectively decentralised. This has boosted the morale and efficiency of health workers. When I arrived in Uganda a Ministry of Health official allowed me to accompany him on field trips to meet traditional midwives. They were hard to find, and I needed the two excellent interpreters who still work with me. The Safe Motherhood Initiative of the World Health Organisation decrees that all women should be delivered by skilled attendants, who are supposed to be Western trained, not traditional midwives. This was based on a false correlation made between the type of care and the outcome, typically in countries such as Sri Lanka, which are very different from Uganda, having had a stable infrastructure and general education.
The traditional midwives with whom I spent much time were mostly trained as Traditional Birth Attendants (TBAs) under the auspices of the WHO or Unicef. They were given instruction, but never asked how they conducted their own practice. As elsewhere in the world active management of labour and its accoutrements are the rule in even modest sized obstetric units in Uganda, but the word in the countryside is that "women don't want to go into hospital, they don't like being made to lie on their backs". Western trained staff have been indoctrinated in ways inimical to the traditional to an alarming degree. A very useful scheme of referral to hospital has received limited audit, with the opportunity to audit all outcomes sadly missed. On the other hand I have learned much about the management of complicated labours from traditional midwives.
I have attempted on the one hand to give appropriate modern training to the TBAs when they would have a genuine use for it, but on the other hand also to allow (indeed, encourage) them to share their methods, their experience, and their local knowledge with conventional trainees. In many ways, this merely reflects my practice here in East Anglia: an intimate engagement with the situation and mentality of my clients is crucial to a safe outcome.
We know that when caring for the pregnant in this small group of villages we must do preventative work; since nutrition is vital we encourage the consumption of the locally grown millet which contains iron, but which is more likely to be sold for profit. We need to address the problems of malaria and HIV. Knowing that women bent on a career in midwifery will move to the large centres we concentrate our efforts on encouraging nurse-midwives to become traditional midwives; they will know the village women well, will listen and give respect (without which the women will not relate to them and accept their advice) and most importantly will provide continuity of carer. The purpose of the classroom which we use is to help traditional midwives to teach both traditional and modern ways to the mothers. The Ngosi system of gathering funds on an ad hoc basis to pay for care can be very useful, so long as the money is not lost to corrupt practices. I believe that combining traditional and modern approaches to care, along with a large scale return to home birth, would reap the global benefits to which I have referred.
[Tragically Sally died in a motoring accident shortly after this meeting.]
Antenatal and newborn screening for sickle cell and thalassaemia - will the NHS Plan deliver?
From Allison Streetly, (AS) Senior Lecturer, Department of Public Health Sciences, Kings College, London.
This presentation reviews the issues arising in relation to the government's commitment to introducing screening for newborn and antenatal screening for sickle cell disease (SCD) and thalassaemia (Streetly 2000).
My work is in public health, which is both a science and an art. This meeting has already emphasised the need to use the best of Western medicine while not discarding traditional ways and attitudes. A screening programme must pay attention to the sensitivities of the groups at which it is aimed, and must be culturally and socially acceptable. I have personal experience of seeing cultural taboos respected while Western practices are being successfully introduced.
As large migrations especially from the Caribbean and Africa occurred and increased the size of the affected urban populations. In the seventies and eighties the politicians refused to regard the issues of SCD and thalassaemia as national, and they returned them to lobbying groups as local problems to be resolved. This went on for 20 years while the prevalence of the conditions increased apace, providing clear evidence of need. As it was proved that screening was effective the focus fell on this rather than on treatment.This became a black political issue - there was labelling of patients as drug addicts, and the stigma attaching to these conditions led to patients, for example male black patients anecdotally always having white girl friends, as black girls "didn't want to know them"; others conceal their disease for fear of losing their jobs. The situation was aggravated by media misunderstanding of the aims of antenatal screening, by some poor practice, and by high profile deaths in police custody.
While the initial hospital based model created dependence, recognition by the NHS of the importance of the social aspects and empowering of patients has led in some places to a more patient focused model of care. There is good evidence that neonatal screening reduces mortality and morbidity from SCD, and antenatal screening can lead to informed choice, with the option to continue affected pregnancies, bearing in mind the variability of SCD. Thalassaemia major is more predictable in its clinical course.
Preconceptional and antenatal screening were not at first proposed for implementation in the NHS plan, whereas newborn screening had been supported by the National Screening Committee for several years.This changed when the Prime Minister's office was lobbied on these issues as symbolically important to the black community. Chapter 13 of the NHS plan in July 2000 committed the government to the implementation of effective and appropriate national linked antenatal and neonatal screening programmes for HBO for women and children by 2004.
Currently there are estimated to be more babies born with haemoglobinopathies in Great Britain than with cystic fibrosis, a condition of which there is far greater awareness; the incidence of HBO is estimated to have increased by 45% between 1991 and 1999 (Modell, personal communication). The number of births of babies with sickle cell disease identified by screening programmes in 2002 was 166 (Gill and Klynman 2003). Nonetheless support and attitudes to screening in the communities at highest risk is variable; while women may wish to know whether they may carry an affected child, the difficult question of termination of pregnancy causes doubts about such a programme. There is also stigma attached to these conditions in some communities, and lack of awareness among the general public is another issue.
The screening programme and services to patients should operate in parallel, but the lack of a commitment to treatment causes disillusion. There are significant sensitivities within the many affected communities and religious groups in this country, and these importantly affect the antenatal care provided by midwives, despite substantial demand from individuals. Arranged marriages provide the opportunity to ensure that both partners do not carry the disease; on the other hand the labelling of a woman with a disease may affect her marriageability. Communication around these issues which are so difficult for the community can be helped by religious leaders; there is a general lack of awareness in the national press about these matters which must be corrected. The challenge is to make screening widely acceptable within the communities and sensitive to the population which it serves, and to overcome the prevailing reluctance and inertia; genetic screening which detects carriers is a concept which risks misunderstanding. Only when the identification of affected pregnancies is presented with sensitivity will that be acceptable.
It has been my view that newborn screening should take first priority in implementation, as treatment can be started early, and the programme and the services to support follow-up of the babies are acceptable. As of September 2003 all London born babies are being screened, and although only 25 per cent of the country's babies are covered, the skewing of populations allows this to detect an estimated 80 per cent of cases. Despite the belief in some areas of low incidence that screening is unnecessary, we have taken the view that in equity it should be universal. Setting up the services in this way avoids giving the impression in antenatal screening that the option to terminate pregnancy is the main and only reason for introducing the programme, and permits offering informed choice. Centres for the training of professionals called the PEGASUS Network (Professional Education for Genetic Assessment and Screening) and work in involving communities are being set up. A steering group with a lay chair is overseeing these developments, and the media, community involvement and the development of materials are being addressed. Trusts in high prevalence areas are expected to implement universal laboratory antenatal screening from 2003. Newborn and antenatal screening will benefit from counselling services, data collection and audit. Fortunately there is a professional consensus to support these programmes, and some new funding.
By the end of 2005 sickle cell newborn screening should be established across England as a universal programme, and should contribute to raising awareness among professonals about the condition. Progress has been made over the past two years, particularly in relation to the formulation of policy, but much remains to be done in relation to implementation and service development, bringing together the best of the existing diversity. Future needs include the defining and raising of standards and the achievement of more consistency in levels of service; development of recognised specialist centres for all aspects of the service at regional level with arrangements for clinical networks; the engagement of Primary Care; the raising of the programme's profile to attract staff and finally and mot importantly the ownership of these programmes by the populations most affected for whom they should be of benefit.
Streetly A. A national screening policy for sickle cell disease and thalassaemia major for the United Kingdom. BMJ 2000;320:1353-1354.
Streetly A. (2000) A national screening policy for sickle cell disease and thalassaemia major for the United Kingdom. British Medical Journal 320:1353-1354.
Gill C, Klynman N. (2003) Care pathways for antenatal and neonatal haemoglobinopathy screening in London. London Health Observatory.
Modell B, Petrou M, Layton M, Varnavides L, Slater C, Ward WRT, Rodeck C, Nicolaides K, Gibbons S, Fitches A, Old J (1997) Audit of prenatal diagnosis for haemoglobin disorders in the United Kingdom: the first 20 years. British Medical Journal 305: 749-754.(Internet: http://bmj.bmjjournals.com/cgi/content/full/315/7111/779)
From the discussion.
SK: I do not believe in natural birth so much as in the beliefs surrounding birth held by different cultures. Unable as many are to cope with nature, our worship of technology is taking us into deep difficulties. Technology has its place but the interactions and relationships of human beings are more important.
The introduction into non-Western societies of powerful symbols such as drugs and the hypodermic syringe is merely to multiply risk. They are taken up with enthusiasm and their use for uterine stimulation has disastrous effects.
There is a world of difference between informed consent - where patients sign up to the information given - and informed decision making, a process which involves a conversation and the sharing of ideas.
SS: My work is only undertaken on the basis of a full sharing of responsibility between myself and the families. They are well informed, and they make all the decisions.
Programmes of updating TBAs with knowledge of modern methods have failed because they ignored the cultures within which they were presented. Combining traditional with modern methods is likely to be effective because it will be acceptable to the communities to which they are offered.
Beverley Beech (AIMS): A training scheme in Brazil enabled TBAs to identify obstructed labour, a major cause of the then high rate of maternal mortality. Prompt transfer, using the few cars available, into hospitals where the staff had been advised to receive the mothers in a welcoming way resulted in a fall in mortality to below European levels. When the obstetrician responsible for the scheme died, the skill died with him with the expected result.
AS: Pregnant women are given full information about their antenatal screening, with the results; they should then be told, with details, about their opportunity to choose newborn screening or otherwise. At present parents receive the results of newborn screening in differing ways, and it is intended that this will be made more coherent in future, combining the results for PKU and congenital hypothyroidism with those for SCD and CF.
The issue of paternity can arise when the results of both HBO and CF testing are discussed, and counsellors are well aware of the sensitivity of this matter.
It is true that Cypriot communities have for long been familiar with HBO screening, but the many differing communities throughout the country have to be informed in ways tailored to their needs.