Royal Society of Medicine Forum: Pregnant and with HIV: facts and feelings.
This is a report of a meeting of the Forum on Maternity and the Newborn of the Royal Society of Medicine, held on Tuesday 18th February 2003. The meeting was chaired by Dr. Basil Lee, Retired GP and Forum Secretary.
This report first appeared in the RCM Midwives Journal. It is reproduced here with their consent and our thanks.
Antenatal HIV testing: issues for women don't speak English.
From: Carolyn Roth (CR), Research Assistant, City University Midwifery Department, London, (with Shamoly Ahmed, Rayah Feldman, Jane Sandall and Judith Sunderland).
This study, conducted in East London, explored how information, choice and informed consent about HIV testing are facilitated for women who do not speak English, with the aim of evaluating bilingual advocacy services in relation to the uptake of antenatal HIV testing. Our objectives included descriptions of advocates’ roles and experiences, and an exploration of women’s views and perceptions of language support during their care and of the HIV test. We also wanted to investigate midwives’ perceptions of the service and its contribution to women’s informed consent to testing, and to consider areas for further service development.
Bilingual advocacy involves the use of workers, bilingual in English and the appropriate language, who meet with pregnant women during the antenatal period and facilitate their care. A partial command of English frequently leads to misunderstanding of information and care given, particularly when it becomes technical.
Our project was funded by the former East London City Health Authority, and was undertaken just after the recommendation was made by the Department of Health in April 2000 that all women should be advised to have HIV testing in a pregnancy. Since many women in East London do not have English as a first language we conducted interviews with workers in the field and also focus groups with working advocates, the women themselves, and midwives. We wanted to measure the success of the programme from the point of view of the women and of the advocates themselves, and to assess how midwives saw the working of advocacy in helping women to reach their decisions, and where they saw the need for change. We anticipated that women might need more from language support than just help with antenatal testing, so our interview was focused on opinions of antenatal care generally as well as of testing, including that for HIV. Our key groups were in Hackney, Turkish and Kurdish speaking women; in Tower Hamlets, Somali women and Bangladeshi (Sylheti) speakers, who comprise 54% of women in antenatal care there, and in Newham French-speaking women from the Congo - although many of these would have preferred the advocates to be using their local languages, a service which, although available, was not made known to them. Many of them had not previously received language support.
There are important lessons to be learned from what follows.
We found that HIV testing itself was quite acceptable to the women, although their understanding of the purpose of the test was often only partial. Women mostly recalled that HIV testing is recommended for all pregnant women, is confidential, and is not compulsory, but tended to perceive it as primarily about the health of the baby and not about prevention. An important finding was that many women were frustrated by not receiving reports of the results of testing. They also felt a lack of the sort of general information about pregnancy and birth which would be more easily accessible to English-speaking women, and share with many the omission of sufficient explanation of the purpose of the various tests. The booking visit cannot provide comprehensive information; there is a need for the provision of more health information in the community. As so often the agenda is set by the care givers, and the women were often disappointed that the concerns with which they came were ignored. There was a feeling that the professionals did not listen to them.
Difficulties in accessing the service included ignorance of its existence, and the problem of matching an advocate to the client at the necessary time, or errors in matching the correct language to the client. Sometimes the need for advocacy had not been recognised, or although it was available the presence of an English-speaking partner or relative was preferred by the carer and this upset the mother. This issue became even more important where a family member was employed as the interpreter in the absence of an advocate; their understanding of English or of technical terms was held to be in doubt, and in particular the cultural role of men as decision-makers was regarded to be a hindrance. Here it was feared that getting the men to leave the consultation might lead to hostility, possibly directed at the women themselves. Occasionally pointless bureaucratic boundaries were set which frustrated an arrangement, for example as to whether the advocate was serving a GP or the midwife; the boundaries between hospital trust and community and between the maternity service and primary care and the voluntary sector can be a source of difficulty. Sometimes available written information was not supplied, or might even in the case of major languages not be available. All these issues exist alongside the well known difficulty clients have in retaining much new information, a problem compounded when HIV and Down's syndrome testing were discussed together.
Some enthusiastic advocates, being aware of the time and other limitations of the antenatal booking visit, were keen to work in other settings, particularly prior to that visit; some of the mothers, likewise aware, had informed themselves using media such as videos in their own languages. There is insufficient time, they feel, to discuss the complex issues thrown up around HIV testing, and an anxiety that this may preempt decisions. Advocates complained of being put down by doctors or midwives; more training for advocates and midwives is needed to overcome prejudices and to inform both about each other’s roles. There is also a lack of education about the conditions these women left in their home countries and about the circumstances surrounding their arrival in the UK. The delivery of language services and women’s desire and need for advocacy should be audited.
Pregnant and with HIV: my experiences.
From a member of Positively Women (PW).
[Introducing the speaker the Chair described the services offered by the Positively Women organization. Established in 1987, it is the only nationally established charity for women living with HIV, run by women living with HIV. It provides peer support, crèche facilities, therapeutic services for children affected by HIV, information, advice, training and volunteering opportunities. The aims are to empower women living with HIV to make important choices, and to ensure that their voice is heard. They publish a newsletter for circulation among their limited readership, and run support groups, including one for the drug and alcohol dependent.]
I welcome this opportunity to discuss with health professionals the care we HIV positive women receive and our experiences of living with the condition.
At age 16 I was one of the first sexually active generation of girls who had to deal with AIDS as an issue when the Department of Health distributed their information leaflets. But the message I and other white middle class girls took from them was that AIDS was more of a concern for haemophiliacs, drug addicts, homosexuals and people of African descent than for me. I would be OK; it happened to other people. I recognised the importance of condoms, however.
In 1992, aged 24, I was offered HIV testing among a raft of other tests at a time when I was thinking of leaving the employment in New York City to which my health insurance was linked. I had been married to an American; an earlier test had been negative, so I had no concerns and of course had had no counselling. My young GP knew no better than to tell me I’m sorry, you’re positive, there’s no cure and no drugs. You might live ten years; better not have children. You can have a second opinion if you like. It transpired that my then partner had used drugs and was himself positive.
I was referred to Gay Men’s Health Crisis, the only support available at the time, and slightly useful to me; in such a situation one needs the support of someone of the same sex who is living with same problem (like Positively Women, in fact). I was in shock, in denial, and made hasty life decisions. It was the loss of the parenting option which hurt most. I returned to England in 1995.
Three months into a new relationship the condom and the morning-after pill both failed; I was pregnant, and thrilled to be so, although feeling very guilty about it. I had been negative about the hope of treatment, but now the hospital clinic told me about new medication and research into mother-baby vertical transmission; I allowed myself a lease of life - better believe I had a future and come to terms with HIV and do some research into it. This is when I first went to the London Lighthouse, and discussed my situation with my family. My father could not understand my choices, and rejected them as irresponsible; we are still estranged from each other, despite his having two healthy grandsons now.
My experiences of care in the era of combination therapy have been nothing but good, and I worked hard and became a typical articulate demanding HIV patient. As a group we are quite active in our own care; the attitude of feeling involved with the condition and its supportive community is important, and now I value being involved in the creation of services as a member of Positively Women. In deciding to have a baby I reclaimed my future, a watershed for me.
The blinkers came off as I realised I was going to have to swallow that first pill. Now I take 18 pills daily; HIV is symptomless, but the drugs give me plenty of symptoms and a regime at which I cannot claim to be perfect. My journey with HIV is ongoing; it will include helping my two children, now 5 and 6 years old, to understand about health, and drugs, and their mummy’s future.
HIV: Reducing vertical transmission from the obstetric viewpoint.
From: Zoe Penn (ZP), Consultant Obstetrician, Chelsea and Westminster Hospital, London.
Pregnant women who are HIV positive are a growing challenge, especially in large urban areas. The vertical transmission element of our work is only a small part of what affected women need and of what we provide. It is unfortunate that many are learning of their HIV status for the first time during a pregnancy, often a first pregnancy with all its own fears, and bring with them their preconceptions about the condition. The immigrants among them are particularly vulnerable and alone, although spared to some extent the stigma they would have suffered in their home communities. Some women are referred from the assisted conception unit, which has a sperm washing service. Many are women who have had pregnancies terminated, but are now aware that advances in treatment now make it possible to embark on a pregnancy. Given good communication between departments it is possible to afford the HIV positive a normal experience in the antenatal clinic, without the pressure of being singled out by their diagnosis; this is facilitated by our excellent Women’s Health Advisers. Appointments need to be synchronised; otherwise a special combined clinic should be offered. In the background is a comprehensive team including an obstetrician, a genito-urinary medicine (GUM) physician, a paediatrician, a paediatric specialist nurse and social workers. Within this is the midwife team which specialises in conditions of high risk, not only HIV; they have experience of the needs of these women, they protect their confidentiality, enable normality wherever possible, and undertake specialised procedures such as the management of infusion and other regimes in labour.
I am glad to be able to reassure women who feared that their babies would not survive infancy that HAART should see them through to the time when their children leave home and beyond; this is a chronic disease, not a death sentence, as Esme demonstrated, granting a life of virtually normal motherhood.
Sexual health screening is undertaken at booking and 26 weeks; other diseases in this category may be present or acquired, and baseline tests for hepatitis B and CMV are necessary because of the known susceptibility of the HIV positive to them. Similarly baseline measurements of serum urea, electrolytes, and lactates are made whether the women are on HAART or not. Decisions around delivery depend importantly on the viral load and CD4 count, and the GUM department reports on these regularly.
There is a difficulty around invasive testing where antenatal screening abnormalities are discovered in these women, and we make this clear to them in the discussion of screening. The maternal and fetal circulations may come into contact with each other when needles are inserted at these times – consider the administration of anti-D for amniocentesis - and the issue of possible vertical transmission arises then. For this reason antiretrovirals are sometimes given in full dosage early to reduce the viral load to undetectable; while this has had some success, the research is not as yet able to guarantee it. The fetal medicine specialists carry out ultrasound scans on mothers taking medication; there is particular anxiety on this point if conception has occurred while medication is being taken, although the standard cocktail of drugs has not been shown to be teratogenic. There are unconfirmed suspicions concerning biliary atresia and mitochondrial dysfunctions.
While HAART is normally started between 22 and 26 weeks, in situations such as multiple pregnancy, or where the background, ethnicity, or drug usage (other than HAART, which is not yet a proven cause) indicate possible preterm delivery, there is a pressure to start the treatment and so reduce the viral load in good time. Low CD4 (helper T-cell) counts may lead to intercurrent infections, for which cotrimoxazole is safe after the first trimester. There are choices of drug regime and timing to be made according to whether testing shows that a woman needs medication for her own health, or where she considering pregnancy while on medication, but most prescribing is being done to prevent vertical transmission only. My own involvement in the treatment with antiretroviral drugs is only when conditions such as pre-eclampsia complicate a pregnancy, because the liver or kidneys may be affected. Great urgency and precision in treatment, with complete protocols available, are required when HIV positive women arrive for the first time in labour. Such decisions and others – the presence of fibroids, placental abruption, possible underlying chorioamnionitis – fully justify the involvement of a consultant obstetrician to make the choices. The first diagnosis of HIV after a birth, perhaps when the mother is already breast feeding, also taxes decision making skills to the utmost. The suspicion that HAART may cause premature labour has led some to recommend caesarian section (CS) before 38 weeks; in any case we always emphasise to mothers that they should come to the labour ward on the least evidence of labour. Our birth plans are held available at all times, not least because many of these women do not carry their own notes, for fear of a loss of confidentiality.
The basic premise in prevention of vertical transmission is to aim for undetectable viral load at least four weeks before the expected time of delivery. This permits vaginal birth, other things being equal, and this is becoming more usual, although the definition of undetectable leaves a grey area for decision; many presume the count to be undetectable if below 1000. We discuss CS and vaginal delivery at booking, and advise against breast feeding and that the baby will receive combination therapy similar to their own for 4 to 6 weeks, until their preliminary HIV status is known. While antenatal care is as normal as possible, the vital teamwork continues in the background; the care has to be tailored to what a mother and her family can accept. The whole HAART cocktail may be unacceptable, but even one tablet of nevirapine at the onset of labour is much better – for the baby - than nothing.
Since exposure to genital secretions and maternal blood are the major sources of transmission, it is the time of the birth which focuses attention on the mode of delivery, and these decisions have become dependent exclusively on the viral load. The apparent higher morbidity of CS in these mothers is probably associated with their ethnicity; previous surgery and pelvic infection may be factors. In my practice planned CS is mostly reserved for those who ask for it; otherwise it is employed for women whose viral load is higher than undetectable or unknown, and for those with other indications, including previous CS. Bloodless or minimal exposure CS is always worth while, if only to keep the technique at a high standard for those who need it; if possible I deliver the baby in the membranes, and keep the baby’s face well away from the uterine or skin incisions. All other means to avoid infection of the baby are used. Planned vaginal births should be of normal onset and course, with no invasive monitoring or fetal blood sampling. . If any delay is anticipated or encountered, or labour is prolonged or difficult there should be early recourse to CS. The baby should be bathed immediately after birth.
By these means we are achieving vertical transmission rates under 1%, compared with 15% when nothing is done, and 7% when only breast feeding is omitted; further improvement is unlikely. It is this success which powerfully recommends antenatal HIV testing and its promotion.
To preserve confidentiality the mothers are given side wards; the information on who among their families, friends, GPs and health visitors are aware of their diagnoses is documented, and this information is known to all staff. Babies which prove to be HIV positive require long term follow up. Successful management of these women and their babies relies on good relationships between them and their caregivers. Much care and sensitivity should surround privacy, confidentiality and the difficulties many will have with their diagnosis, or the denial to them of breastfeeding or normal birth.
Discussion. (D = contribution from a delegate. Representatives of the London Lighthouse and Terence Higgins Trust were present).
(ZP) Sperm washing is currently provided free by a charity at CWH.
(D) Perhaps a charity could provide a source of funding for women in this situation who are ineligible for free treatment under the NHS, to avoid the aggressive approach of the Hospital Trust for payment which is now usual. An obstetrician said that he will authorise free treatment for them until guidelines decree otherwise.
(CR) The ethical dilemma posed when a woman is presented with the diagnosis and the implication of necessary expensive ongoing treatment.
(ZP) We test for hepatitis C when HIV is diagnosed.
(D) Test results. Positive test results are pursued, while negative results are often ignored, and it is this which causes distress.
(PW) Despite the natural reluctance to take medication, and given the latest information on combined therapy, most HIV positive patients, once started on medication, are resigned to continuing it for the rest of their lives.
(ZP) – on the issue of informing GPs of the diagnosis. Even professionals at times react in a very negative way. I point out to women that their care will soon be the responsibility of their GPs, and most accept that they should be informed, but twice the result has been bad. On one occasion I had to point out that this was a time of her life when she most needed her GP’s support (when she had been rapidly removed from the GP list); the other GP refused to give heparin injections to his HIV positive patient at home.
(PW) Particularly in small communities there is a fear that the knowledge will not be kept confidential by the doctor or his staff, although one understands that confidentiality is part of the code of conduct. The stigma attaching to HIV is still huge.
(ZP) Yes, a single dose of nevaripine when labour starts is far from the ideal, and there is a theoretical risk of viral resistance developing, but with the refusal of some women to take medication at all this can be one way of customizing the care.
(PW and CR) The prospects of helping a rejecting family with counselling are poor; partner rejection is an aspect of this, and much feared by HIV positive women.
(ZP) – on the ethical dilemma of knowing that such women continue to have unprotected sex with their partners, who may eventually present with advanced disease. Persuading one woman to tell her partner may be effective, but for us to inform partners without consent would almost certainly result in a general reluctance to pass the knowledge to anyone, compromising the long term provision of care. (EB) The anger of a woman who contracted HIV from a partner who was taking HAART for years in secrecy from her, despite the pressure to tell that must have been applied by his medical advisers.
(D) An obstetrician admitted that he would give his patient a few weeks to adjust to the diagnosis, and would then tell her that he reserved the right to protect her partner by informing him if she did not.
(PW) – was told in an open group by an unaware midwife that she should be breast feeding, to which she responded: I would prefer to. Read my notes. There is widespread departure from the guidelines on communication, and women are experiencing the down side of this.
Assisted conception for an HIV positive woman is a right (PW But I would say that, wouldn’t I?), and (ZP) in view of the improved outlook with current treatment we can regard this course to be in the interests of the wanted child as much as in the cases unaffected by HIV – and observing the same safeguards.
(ZP) Our low vertical transmission rate is repeated wherever a specialist team approach is used, and this must become the norm. But (CR) the dispersal of asylum seekers from high prevalence areas can leave them with less than optimal care; the policy of dispersal should be revised, and inexperienced carers have to be prepared to seek advice from the experts on behalf of their patients.
(CR) The example of a woman assuming that her negative red cell antibody test was reassurance about her HIV status points up the general inadequacy of antenatal care, which I believe could be improved by the provision of more written material for mothers, in a variety of languages. (ZP) We should be aiming to normalise – by recommending it – the uptake of HIV testing in pregnancy, as has been the case with testing for syphilis. (CR) But beware those who understand the word negative to have a bad connotation.
(PW) The only remedy for the persisting discrimination which the HIV positive face is such normalisation, so that HIV falls into that large and accepted category of chronic disease to which people have become adjusted.
(D) We need to educate our own families in that direction, hoping that this will disseminate the attitude of normality around HIV.
(D) An HIV Health Adviser has found that normalisation at first diagnosis is impossible, and leads to loss of confidence on the part of the patient. (PW) It is perhaps only the peer support offered by the women themselves HIV positive in organizations such as PW that can help a woman to begin to accept a sort of normality in herself. Unfortunately PW is alone in this field, and although we offer free literature to hospitals and general practices, too little of it is on display. PW on line on the Internet is a valuable resource, as is our bimonthly newsletter.
(D) A midwife HIV specialist regretted the huge secrecy among women, particularly black African women, which prevents their giving each other support and their contacting support organizations such as PW.
(D) A midwife teacher (a member of the Forum committee) had nothing but praise and thanks for the PW speakers who are always an effective and much appreciated presence at the study days held by her department.
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