The right to remain silent: a qualitative study of the medical and social ramifications of pregnancy disclosure for Gambian women
Dr L Brabin, Academic Unit of Obstetrics and Gynaecology, Research floor, St Mary’s Hospital, Hathersage Road, Manchester M13 OJH, UK. Email email@example.com
Objectives Control of infectious diseases in developing countries often requires using drugs that are contraindicated during pregnancy. Avoiding inadvertent exposure to drugs involves women (a) recognising pregnancy early, (b) disclosing the pregnancy to health workers and (c) using medicines in an informed manner. We explored these factors to inform and improve the process by which health workers provide care and treatment to pregnant women.
Design Qualitative study.
Setting The Gambia.
Population Rural women and men.
Methods We conducted 41 interviews and 16 focus group discussions with women, adolescents, men and traditional birth attendants (TBAs).
Main outcome measure Pregnancy disclosure.
Results Most women recognised early signs and symptoms of pregnancy and believed other people could easily do so. To avoid gossip, women hid their pregnancies and delayed antenatal care, even though husbands and TBAs insisted on attendance. Women acutely ill in early pregnancy hoped health workers would recognise pregnancy without explicit disclosure. Women said that they knew, and sought to avoid, some contraindicated drugs, but their knowledge was rudimentary. Health workers stressed the benefits, not the risks of prescribed drugs.
Conclusions Despite public health and clinical benefits of preventing and treating pregnancy infections, women were ill informed and pressurised into taking drugs. These ethical issues should be more widely addressed.
Facilitating the safe use of medicinal drugs during pregnancy is an essential component of good healthcare practice for mothers and babies. Many drugs are not licensed for use in early pregnancy as some are potentially harmful1,2 or their risk has not been determined.3 Improving access to effective drugs is integral to achieving Millennium Development Goals for disease control in many developing countries, especially sub-Saharan Africa,4 and women will be exposed to drugs in many different settings. Mass antihelminthic drug distribution5 and routine intermittent prophylactic treatment to prevent malaria during pregnancy6 are two examples of drug intervention programmes. Self-medication is also widespread due to the availability of over-the-counter drugs.7 The growing scale of intervention programmes, some of which rely on community-based drug distribution by relatively untrained staff, and the lack of routine monitoring systems increase the risk that women will be inadvertently or inappropriately treated during pregnancy. This could result in treatment failure and more miscarriages, congenital malformations or other pregnancy complications.
Appropriate drug use requires programme managers to prioritise pregnancy recognition and drug management among health workers,8 and ensure that women are informed and sufficiently alert to some of the dangers. Yet, managers may be more concerned with drug compliance than prescribing competency. Health workers are often sceptical of women’s ability to recognise an early pregnancy, understand health messages or make reasoned decisions about their health, especially when the women are illiterate or if they live in rural areas.9,10 Yet, all cultures assign special status to the pregnant woman, and women make health-related decisions based on their own experiences, expectations and fears concerning pregnancy, as well as a sense of how their circumstances fit with social norms.11 A woman’s pregnancy is a common topic for gossip, which is not idle, but is purposeful talk that maintains moral values and circumscribes female behaviour.12–14 Women who feel threatened by a suspected or unwanted pregnancy may ignore pregnancy signs or delay seeking information or pregnancy confirmation.15 Our qualitative study was undertaken to explore the factors that influence women’s decisions to take medicines during pregnancy in rural Gambia, and in particular, their recognition and disclosure of pregnancy to health workers. The overall aim was to inform and improve the process by which health workers provide care and treatment for pregnant women.
Between February and November 2007, the study was conducted in rural Kiang West, The Gambia. Most inhabitants belong to the Mandinka tribe, are Muslim by religion and have a marriage system based on polygyny. Three villages (Jiffarong, Dumbuto and Janneh Kunda) were intentionally selected on the basis of their distance (8, 30 and 40 km) from the Medical Research Council (MRC) field station at Keneba and access to health care. Antenatal care (ANC) for one village was provided by combined MRC/government trekking teams, but the other two villages were more isolated and relied on government health facilities. Using a list generated from the MRC database, nulliparous and parous women of different ages were consecutively approached in each of the three villages, and their participation requested for either in-depth interviews or focus groups. Men and traditional birth attendants (TBAs) were identified by community health workers and were also recruited for focus groups. Between five and eight participants participated per group. Four focus group discussions were held with younger women (average age 25 years), four with older women (average age 40 years), three with adolescent girls aged 12–17 years, one with TBAs and four with men (n = 4), notably men who held senior positions in terms of village roles and practised polygyny. Women who were participating in a MRC nutritional study were excluded to avoid any concerns about their micronutrient supplementation. The consent of the alkalo (village head) was sought to approach individuals living in the village. Individual participants gave written (signature or thumb print) consent after the information sheet had been verbally explained and discussed to ensure their informed consent. They were assured of confidentiality. A total of 41 in-depth interviews and 16 focus groups (n = 83 participants) were conducted.
Interviews and focus groups were recorded using audiotapes. The sessions took place in a health centre or in a village compound in which privacy could be maintained. A female Gambian field worker (I.D.) who was fluent in English was trained by L.B. and E.S. to conduct in-depth interviews and focus groups with women; a male field worker was trained by E.S. to conduct the four men’s focus groups. The main topics for all sessions were as follows: (a) pregnancy recognition, for example signs and symptoms for first and subsequent pregnancies, (b) pregnancy disclosure such as social norms, circumstances affecting disclosure and events following disclosure and (c) medication during pregnancy including beliefs about western and traditional medicines, attendance for ANC and recall of advice received about drugs during pregnancy. During training and for the first few interviews, questions were asked in English and translated into Mandinka to monitor the quality of interviewing and to guide I.D. on how to probe new or interesting points. Thereafter, interviews were conducted in Mandinka. E.S. was always present, and occasionally, I.D. would translate points into English if she required guidance during the interview. When focus groups began, there were no interruptions for English translation. I.D. was trained to discuss drugs neutrally to avoid raising anxiety about the safety of particular drugs (e.g. women were never asked if they thought drugs caused fetal abnormalities). E.S. and I.D. reviewed each session listening to the tape, with I.D. translating and E.S. providing feedback. E.S. sent the transcripts to a recommended commercial Gambian translator in the capital, Banjul. Returned manuscripts were assessed by E.S. and I.D. for content and quality of translation. Occasionally, transcripts were unsatisfactory and returned for retranslation.
Transcripts were read independently by both E.S. and L.B. A generic qualitative approach was used.16 The theoretical position was derived from medical ethics, which informed the research topics (e.g. situations leading to risk of inadvertent drug exposure) and coding categories (e.g. confidentiality and free will). We systematically coded actions and conditions that led to failure to disclose pregnancy. The process was iterative, and once consistency started to emerge, codes were used to categorise subthemes in subsequent interviews. Interviews, focus group discussion (FGD) and subgroup data were compared, and repeated or discordant themes identified. This process continued until both researchers were satisfied that there was a theoretical basis to explain why women might not disclose their pregnancy to health workers and how this might lead to inappropriate use of medications. A one-day workshop was held to discuss these explanatory themes with 15 local health workers. After the workshop, the sections of the transcripts dealing with health worker encounters were re-read for subjectivity or overinterpretation by the researchers. In this report, combined data from FGDs and interviews are presented, and main themes illustrated by verbatim quotations translated from Mandinka to English.
Recognition of pregnancy
Both men and women thought that pregnancy could be detected early (before 3 months). Women were alerted by a missed period and other signs, such as vomiting, food dislikes, lost appetite, unusual aches, pains and chills, tiredness, dizziness and irritability. If their period did not start, women concluded that they were not ill, but pregnant. Breastfeeding women also watched for signs of pregnancy. Both sexes agreed that other people would recognise a pregnant woman, as her eyes became brighter, her face pale and she may get pimples. They also became aware ‘through her actions’ as pregnant women ‘spit a lot’ (i.e. vomit) and continue tasks they would not do if menstruating, such as daily prayer and washing men’s clothing. Men kept a close eye on their wives’ menstrual cycle, and senior men were knowledgeable about the fertile period, abnormal menstrual patterns such as prolonged bleeding and the duration of postpartum bleeding.
Disclosure of pregnancy
Women, especially younger ones, hid their pregnancy for as long as possible. Whereas it used to be customary practice to joke openly with women about pregnancy, this has changed and ‘people now keep things behind closed doors. They are very secretive’ (TBA focus group [FG]). Women were afraid that idle gossipers activated evil spirits (Kuntofengo) that caused abortion so, ‘telling them serves no useful purpose. They will go out and talk to everyone and that may lead to the termination of the pregnancy’ (Jiffarong Village [J] younger women [YW] interview [I]2). People gossiped about women who became pregnant when their husbands were away or who were unmarried. To avoid shame, ‘The individual will insist on saying that she is not pregnant’ (J adolescent [A]FG3) and unmarried girls ‘will deliver without telling their parents’ (JAFG3). Similarly, ‘if you are pregnant while you breastfeed, people talk a lot about you’ (JYWI2) because it is customary to wean a child before resuming sexual relationships. Men were sensitive to this type of gossip and called it ‘ignorance’. From the men’s perspective, pregnancy signified a woman ‘must be very close to her husband’ (male [M]FG3). Husbands had to be first informed about pregnancy, and women worried in case others disclosed it before the husband knew and it ‘comes out, by force’ (Janneh Kunda Village [JK] older woman [OW]FG1). Men wanted to be informed immediately about the pregnancy. One reason was that it allowed them more sexual access as ‘any day she tells you that she is pregnant, from then on, you can be sexually in touch with her regularly’ to ‘fertilise’ (JKMFG3) the baby and make it grow.
Secrecy was not easily maintained. One TBA said ‘We enquire from neighbours and relatives you live with. People even tip us off before we have confirmed it (i.e. pregnancy)’ (TBAFG). Another respondent stated that ‘It is impossible to hide pregnancy even at one month. People with keen eyes can suspect you of being pregnant’ (JKOWI6). Women were reluctant to go for ANC, partly because it took extra time and effort, but mainly to delay pregnancy disclosure. Going to the ANC clinic was seen as a public gesture because ‘At the beginning of pregnancy if you go to a clinic, it is the same as telling everybody that you are pregnant’ (JOWI3). Women valued ANC less than keeping the pregnancy secret and TBAs complained ‘It is only a few of them who will register on time’ (TBAFG).
Compliance with antenatal care during pregnancy
Men uniformly instructed their wives to go for ANC. One woman who tried to delay ANC attendance was threatened ‘if anything bad should happen to his baby, he would kill me’ (JYWI5). Men concurred that women sometimes delayed, but ‘if you become aware of such, you must force her to go. That’s what I used to do, to avoid any blame from her if anything should happen due to her own negligence’ (JKMFG4). Men were not well informed about antenatal drugs but believed they helped women deliver safely and that ‘medicine strengthens women and reduces their recovery time’ (JMFG2). Instead of being confined to the compound for a week after labour and delivery, the men expected ‘the moment the nurse is finished with her, she will wash herself, take a bucket and go and fetch water’ (i.e. resume household duties) (JKMFG4).
Once the pregnancy has been disclosed, the TBAs also ‘advise her to register with the clinic’. They ‘go round every morning to see what pregnant women are doing’ and ‘advise them all the time regarding the Do’s and Don’ts of pregnancy’ (TBAFG). TBAs are trained to assist at delivery, and they, like the men, blamed women if the pregnancy went wrong and women had not taken their medications. One TBA stated:
‘After she visited the clinic and was given the prescribed medicine, we went to her with a piece of paper. We told her that if she defaults in taking her medicines, we will write her name down and send it to the clinic and that when she is in labour, neither we nor the nurses will attend to her’ (TBAFG).
Women who became ill before pregnancy disclosure and ANC registration were faced with a dilemma. They were aware that some drugs should not be taken and had to decide whether or not to tell a health worker that they were pregnant. Some said that if they were asked about pregnancy, they would acknowledge it, but most would not volunteer this information. In outpatient clinics, women were more likely to be seen by male nurses. Some women said that they would only disclose a pregnancy if alone with a female health worker because ‘women are more secretive when it comes to such things’ (JYWI3). One male health worker who had realised that his patient was pregnant was reported to have refused treatment until the woman had registered for ANC, thereby forcing pregnancy disclosure. Instead, women expected the health worker ‘to conduct his own investigation’ (JYWI4) and offer appropriate medication without asking them if they were pregnant. They assumed that the health worker would become aware of the pregnancy without explicit disclosure. Adolescents reported that health workers never enquired about pregnancy before treating them. If the health worker gave medication without establishing pregnancy, a woman might not take it because ‘the medication can cause harm to me because they do not know’ (JYWI2). Those who had previously attended for ANC thought that they could recognise the types of medicine suitable for pregnant women.
Information given on pregnancy drugs
Women firmly believed that they would always be provided with appropriate ANC medications ‘because nurses do not give people drugs that harm them’ (MYWFG1). Few women were well informed about the medications, irrespective of their formal education status. Many remarked that health workers ‘told us how these drugs should be taken, but did not tell us their use’ (JOWI3). Women described pills by colour and believed them to be beneficial, although they did not always take them (iron supplements) because of their adverse effects. Women recalled very general messages about each drug, such as: ‘It gives blood and energy to both the mother and the baby. They said it will make you healthier and you will have no difficulty during labour. It will make you deliver easily’ (MOWFG1). Women took their medicines passively:
‘No… I never ask the use of that medicine. I only take it’.
‘So you just accept it like that?’
‘Yes. You see if someone is helping you, you only accept what he gives you’ (MOWFG1).
Passivity did not betoken lack of interest as several women said that they would have liked to ask questions but decided not to because the health worker ‘might not welcome such questions’ (JYWI2) or ‘I felt ashamed because he was a man’ (JYWI3). They took the recommended medications ‘because I see that when people are pregnant, they give it to them to take. That’s why I took it—to help myself’ (DYWI3). Several said that they would have liked to ask whether the medicines could harm them.
Health workers’ comments on the study results
Given an opportunity to comment on these results, local health workers attributed women’s low knowledge levels to the constraints of busy clinics, which gave them no time for discussing medications, or to unreceptive women who were tired of waiting for late trekking teams and just wanted to get their tablets and go. They acknowledged that the practice of giving health talks has dwindled. It was noted that at outpatient clinics, women were not routinely asked about pregnancy, and medications for chronic health problems were rarely reviewed or even recorded on ANC cards. Health workers confirmed that they emphasised the benefits, rather than the risks of medications, to increase compliance.
We have shown that Gambian women who knew that they were pregnant tried to retain some control over their lives by keeping their pregnancies hidden, thereby exposing themselves to the risk of taking inappropriate drugs. At several levels, they did not consent to their pregnancy care and treatment. ANC attendance was often enforced by husbands who also had no real understanding of the benefits of the drugs provided. Men expected modern medicines and ANC to help women have a successful pregnancy, have healthy babies and return quickly to their household duties. The risk of inappropriate treatment was highest if a woman was acutely ill in early pregnancy and did not yet wish to disclose pregnancy. The fact that most health workers were men may have exacerbated these risks, but TBAs, who also held positions of relative authority, were equally unsympathetic to women who wished to avoid disclosure. They set out to look for women in early pregnancy and threatened not to assist at them at delivery if they did not conform. By attaching their own values and meaning to ANC, which they placed above the pregnant woman’s right to confidentiality, those in authority disempowered and prevented pregnant women from taking informed decisions.
A limitation of this study is that we did not formally assess health worker’s awareness of the cautions and contraindications associated with the use of specific drugs by pregnant women. The national drug treatment guidelines, however, contain scant information on adverse effects of commonly used medicines,17 and up-to-date copies of more detailed publications such as the British National Formulary are not always readily available or consulted.18 The health workers invited to discuss study results concurred with the women’s reports that pregnancy status was not routinely ascertained. A study on ANC in the Gambia also reported that few women (13%) asked questions during an ANC consultation nor did they receive effective information and education.19 This situation is of concern because several of the most commonly prescribed drugs in the Gambia are potentially fetotoxic to be used with caution in pregnancy when the potential benefit to the mother outweighs the risk to the fetus. Others are firmly contraindicated in pregnancy (Table 1). Training programmes, whether run by government, non-governmental or research organisations, could make health workers aware of how to provide information to allow women to reach an informed decision. A fundamental ethical principle for health workers is to reassure patients of, and respect their right to, patient confidentiality. Our study also highlights the health worker’s responsibility for ensuring that the community in general has a better understanding of the purpose, mode of action and safety of the drugs given to pregnant women.
Table 1. Selection of drugs commonly prescribed in The Gambia which are contraindicated during pregnancy*
|Aspirin||Painkiller||Impaired platelet function and risk of haemorrhage; delayed onset and increased duration of labour with increased blood loss; closure of fetal ductus arteriosus in utero and possibly persistent hypertension of the newborn; kernicterus in jaundiced newborns|
|Captopril||Antihypertensive (ACE inhibitor)||(1, 2, 3) Avoid; may adversely affect fetal/newborn blood pressure control and kidney function; toxicity in animal studies|
|Ciprofloxacin||Antibiotic||(1, 2, 3) Avoid; arthropathy in animal studies|
|Co-trimoxazole||Antibiotic||(1) Teratogenic risk; (3) newborn blood haemolysis and methaemoglobinaemia|
|Gentamycin||Antibiotic||(2, 3) Small risk of auditory or vestibular nerve damage; avoid unless essential|
|Ibuprofen||Analgesic (nonsteroidal anti-inflammatory drug)||Most manufacturers advise avoid; (3) with regular use closure of fetal ductus arteriosus in utero and possibly persistent hypertension of the newborn; delayed onset and increased duration of labour|
|Ketoconazole||Antifungal||Manufacturer advises avoid; teratogenic in animal studies|
|Mebendazole||Antihelminthic||Manufacturer advises toxicity in animal studies|
|Sodium valproate||Anti-epileptic||(1, 3) Increased risk of congenital malformations and developmental delay|
|Tetracyclines||Antibiotics||(1) Effects on skeletal development in animal studies; (2, 3) dental discolouration; maternal hepatotoxicity with large parenteral doses|
It could be argued that the public health benefits of ensuring women take recommended drugs outweigh the negative effects on individual women. Yet, the scale of inadvertent treatment of pregnant women is largely unknown. A recent review noted that new antimalarials, which may be teratogenic in the first trimester, are being introduced into areas where there are limited controls on their distribution. Mechanisms for reporting adverse events are inadequate.20 In Ghana, 52% of pregnant women knew that they were in the early stages of pregnancy at the time they received antihelminthic drugs as part of a mass distribution programme, although these drugs were contraindicated.21 It is unclear why they accepted treatment, but the fact that so many women received antihelminthics in breach of the protocol must raise concerns. Community sensitisation is a process where information is conveyed to the general population and which routinely precedes health interventions. However, the information provided is not always clear.2–23 In Nigeria, unclear information on the inclusion criteria for preventive chemotherapy for onchocerciasis resulted in 47% of 264 nursing mothers unnecessarily excluding themselves from treatment.24 They did not know that the drug was only contraindicated for mothers breastfeeding neonates (under 1 week) not for breastfeeding mothers in general. Observations such as these suggest that the appropriate safeguards for pregnant women are currently insufficient.
We sought to avoid subjective interpretation but recognise that qualitative studies run the risk of imposed data interpretation, and their results are not generalisable. The study nevertheless provides insights into pregnancy disclosure among Gambian women, which could be compared with other cultural settings. It is important to understand why women may not benefit fully from drug interventions and find ways to help health workers recognise and respond to ethical issues such as TBA threats not to assist women at delivery if they have not taken pregnancy medications, otherwise mothers and babies could be at risk. The problems faced by health workers—too many patients, too few staff—are very familiar,25 but teaching health workers to routinely and discretely enquire about pregnancy before prescribing drugs for any woman of reproductive age, including adolescent girls, should be emphasised. In line with this, health workers should know which of the drugs available to them are not safe to use in any of the three pregnancy trimesters. Issues around confidentiality also need to be addressed in TBA training.
Conflict of interest
The authors have no conflicts of interest to declare.
Contribution to authorship
L.B. designed the study and wrote the paper. E.S. conducted the research and analysed the data. I.D. helped to develop the research methodology and conducted the interviews. S.O. facilitated and advised on the study, reviewed drafts of the manuscript and co-chaired the health workers’ workshop.
Details of ethics approval
Ethical approval was obtained from the University of Manchester’s Committee on the Ethics of Research on Human Beings and the Gambian Government/MRC Joint Ethics Committee.
The funding source was the Sir Halley Stewart Trust. L.B. is supported by the Max Elstein Foundation.
We thank Dr Sophie Moore, Head of Station, MRC Keneba for her support and encouragement, and Mr Bekai Touray for his diligent and sensitive efforts in the field.
Women’s reluctance to disclose pregnancy in some cultures is widely known to occur but is less often studied and reported on. Despite today’s advances in scientific knowledge and availability of evidence on effectiveness of medical interventions, in some settings, the utility of such knowledge is still limited by cultural perceptions and taboos surrounding pregnancy. Overcoming cultural and access barriers are as important as improving the quality and supply of medical care. This qualitative study looks at women’s disclosure of pregnancy in the Gambia, and how it can result in inadequate information provision on the potential harmful effects of medication by health workers.
- 1Background: What is the chain of events that might be postulated for women’s reluctance to disclose their pregnancy from this paper? Why do women in the Gambia try to keep their pregnancy undisclosed? Who do they conceal their pregnancy from, and what are the reasons for concealing the pregnancy from different people?
- 2Clinical practice: In your practice, do you see women who come from cultures that might not encourage explicit pregnancy disclosure? Do you consistently ask women of reproductive age whether they might be pregnant in your daily practice (especially in a non-obstetric setting)? What are the potential risks of prescribing medication to women in pregnancy? What sorts of drugs are contraindicated in the various stages of pregnancy?
- 3Research methods: Qualitative methods are being increasingly used in medical practice. What are the advantages of qualitative over quantitative studies? Why would you choose to use a one to one interview or a focus group discussion to collect data? What are the various ways of analysing qualitative data? Do you think the methods used were appropriate in this study and why?
- 4Ethical considerations: What ethical issues does this study raise in relation to the provision of care? What do you understand by the concept of informed consent? How can informed consent be provided in situations where a health provider might not have full knowledge of a woman’s situation? Suggest how health workers could respond to cultural issues in various settings and contexts.
The author’s work is funded by Immpact (DFID, Bill and Melinda Gates Foundation, USAID) and the University of Aberdeen.
Correspondence: Dr J Hussein, Immpact, University of Aberdeen, Health Sciences Building, Foresterhill, Aberdeen AB25 2ZD, UK. Email firstname.lastname@example.org