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The burden of mental illness is increasing steadily across the world’s people. And most of those with mental illness develop problems during their reproductive lives. This has several implications for mental health services. Deinstitutionalization, better care and use of fertility-preserving medication mean more women with mental illness and severe mental illness are becoming parents. It is estimated that 70% of people with mental illness are now parents and the latest systematic review from the UK finds 10% of women and 5% of men (over 4 million people) are parents with mental illness (SCIE 2009).
Women with the most chronic and enduring illnesses are particularly vulnerable. Unlike most healthy women, they may struggle managing their fertility and sexual choices: unintended conceptions are particularly common. Miller (1997) reported that women with schizophrenia show high rates of coerced sex, high-risk sexual behavior and little use of contraception, even if they do not wish to become pregnant.
Women with severe mental illness are also more likely to be single, have less education and income, which are factors associated with unplanned pregnancies. Current depression is also associated with a higher risk of unplanned pregnancies as shown in a recent national survey in Britain (Wellings et al., 2013). Women who do not intend to become pregnant may be less likely to take folic acid, stop drugs or alcohol, or stop smoking in early pregnancy. Women with mental illness taking psychotropic medications and second generation antipsychotics may be more likely to be obese or have a high prepregnancy BMI. All these factors make a pregnancy more risky even in the absence of maternal mental illness. Women with unintended pregnancies also tend to receive antenatal care later (Lindberg et al., 2014) so that screening and management of physical illnesses may be delayed. In addition, making a decision about continuing with the pregnancy often poses difficult ethical and personal dilemmas and the experience of termination of a pregnancy, although not associated with an increased risk of mental ill health, can cause great distress.
Women with affective disorders who do not plan childbearing are more likely to discontinue their psychotropic medication abruptly on learning that they are pregnant (Roca et al., 2013; Viguera et al., 2007), which places them at a high risk of acute recurrences, especially if the illness is severe or unstable. Although women tend to stop the medication out of fear that it may harm their fetus, there is evidence that the risks are often overestimated. In their study of risk perception, Bonari et al. (2005) interviewed callers to a teratology information service who were taking antidepressant, antibiotics or gastric drugs. The risks were grossly overestimated for all three groups of medications, but particularly so for antidepressants. Encouragingly, evidence-based counselling improved the risk estimations (Bonari et al., 2005).
The rate of unplanned pregnancies in background populations has been reported to be 40% worldwide in 2012, with 47% for more developed and 39% for less developed countries (Sedgh et al., 2014). The annual rate of unplanned pregnancies per 1000 women aged 15–44 was 43–80 depending on the world region (Sedgh et al., 2014). This means that clinicians working in general adult psychiatry are likely to have several women on their case load every year who become pregnant unintentionally. For all of these reasons, it is essential that clinicians discuss family planning with all female patients who have a past or current mental illness and are planning a pregnancy or have childbearing potential.
Reproductive and sexual health
Women with mental illness show significantly worse physical health and related mortality outcomes compared with the general population. In spite of the greater longevity of women compared to men across the world, women with severe mental illness are doubly disadvantaged: they experience health inequalities as well as marked socioeconomic disadvantage by being female in society (Chapter 1). Poor sexual and reproductive health exacerbates the difficulties and can significantly affect their quality of life.
The sexual and reproductive health inequalities faced by women in mental health services represents an opportunity for mental health practitioners to reflect and improve their practice. In their review, Henshaw and Protti (2010) consider this aspect of women’s health in detail. They recognize a broad range of problems such as the lack of attendance at screening for preventable cancers by mentally ill women and a greatly increased risk of preventable and treatable sexually transmitted infections (STIs) such as HIV, gonorrhoea and syphilis. STIs can have long-term consequences including neurological problems, pelvic inflammatory disease or even abdominal adhesions; they can result from unwanted or non-consensual and exploitative sex in mentally ill women, especially perhaps in women with severe or psychotic illness. The US NHANES III Survey of people with severe mental illness concluded that between 50–75% were sexually active in the previous year, with one-third reporting two or more partners and little or inconsistent condom use, whilst large numbers reported a history of injection drug use. Overall, data indicate that the severely mentally ill engage regularly in practices known to involve increased risk for HIV transmission.
Perhaps none of these figures will come as a surprise to experienced clinicians. The problem, however, is that most mental health professionals fail to appreciate the risks for their clients, and how these pervade the quality of their lives, for example risking HIV infection and long-term infertility. In order to do this, clinicians must understand the nature and extent of the problems women face and also the need to assess barriers within their own practice that prevent women accessing appropriate services for these areas of their health.
Most mental health practitioners are well able to take a sufficient history about reproductive and sexual health of women with mental illness under their care, and to access information on current good practice in fields outside their own. However, we and others find mental health nurses are still reluctant to talk with patients about sex or sexual practice; practitioners continue to complain about a lack of confidence to discuss and plan this aspect of care. High rates of sexual abuse in women in psychiatric care create a further layer of complexity (see also Chapters 14, 17). Unsurprisingly perhaps, many mental health professionals say they are not keen to ask about current or previous abuse, for fear of “opening a Pandora’s box”; worse, they may question the validity of women’s abusive experiences. Initially, the woman may simply require a trusted witness with whom to share her experience. Sexual abuse training to equip staff to better meet the needs of women – and men – survivors is now taking place in many mental health arenas. In the UK, this was supported nationally by the Implementation of Violence and Abuse Policy Programme by the late Professor Cathy Itzin; a history of violence or abuse is now routinely considered by many mental health teams. The UK Department of Health also supported development of an open access learning tool to support training of mental health professionals in sexual and reproductive health: www.scie.org.uk/publications/elearning/sexualhealth/index.asp. This contains simple advice about how to talk to patients about this aspect of their lives; many useful training exercises to download; tips on how to help women record their menstrual cycles accurately; when and who to refer for abnormalities of menstruation; how to manage disclosure of abuse; as well as advice about fertility planning.
Service and policy implications
To achieve better reproductive and sexual health for women in psychiatric care, the changes required are relatively straightforward, but they rely on an acceptance that these issues are the legitimate concern of mental health services. Sexual health is a key component of both mental and physical well-being. However, some mental health professionals may find it hard to see how this view relates to their core work. Breaking down the still prevalent mind/body dichotomy is key to the delivery of genuinely holistic, person-centered care. Seeing the links between a history of abuse, depression and irritable bowel syndrome is just one example of how this process can lead to more appropriate care pathways for symptomatic women.
Changes in both policy and practice are needed so that sexual and reproductive health of clients is recognised as part of mental health practitioners’ core work. Without such acceptance, these topics will remain difficult to deal with for women and services alike. Accepting that a patient’s sexuality and reproductive health are integral to their mental healthcare requires good working links with other clinicians in gynecology, obstetrics, genitourinary medicine, as well as with primary care practitioners. One cannot expect that new members of a mental health team could undertake intimate or sensitive interviews with women; rather this should be part of regular reviews and care planning.
Ideological shifts are needed not just for clinicians. Equally important is the organizational response by mental health service providers and policy makers. Sexual and reproductive health must be addressed within policies and training; sexual safety needs to be seen alongside physical safety. In recognition of this, the freely available e-learning resource mentioned earlier also seeks to raise awareness and improve knowledge among mental health practitioners and managers.
Preconception counseling and care
Defining “preconception”
In the United States, the term preconception is used in a broad sense and includes all women of childbearing age. In fact, in response to a lack of progress in national pregnancy and infant outcomes and growing recognition of the role of women’s health status before they conceive, the Centers for Disease Control launched the preconception care and health initiative (Johnson et al., 2006). This recommends a wide range of health promotion, screening and interventions for all women of reproductive age. In the UK, there are no comparable global health care recommendations, although general guidance does exist for planning a pregnancy aimed at health professionals and women themselves (National Institute for Health and Care Excellence, 2012). In this chapter a distinction is made between women who are planning a pregnancy and those who are not, but who have childbearing potential.
Preconception assessment
If a woman has a severe mental illness or an enduring milder illness and is planning a pregnancy, she should be referred to a secondary mental health service, preferably a specialist in perinatal mental health, for preconception advice (National Institute for Health and Care Excellence, 2014). The partner of the woman should be invited to the appointment. Because preconception counseling covers complex issues and requires a comprehensive approach, it is essential that sufficient time should be scheduled. Several clinic appointments may be required. Women should be given information that is clear, up to date and comprehensive and, wherever possible, written information should supplement the face-to-face discussions. She should be encouraged to ask for clarification if needed. It is good practice to copy the clinic letter to the patient. It is also essential that all discussions are clearly documented in the patient records.
A preconception assessment requires a careful review of the woman’s psychiatric history. The accuracy of diagnosis is particularly relevant in this context because the use of medication or psychological treatments across the whole childbearing episode must be justified and appropriate. Areas of particular difficulty here are the differential diagnosis between bipolar affective disorder and emotionally unstable personality disorder, which require different treatment approaches. The course of the illness, including the number of episodes experienced, inpatient admissions and inter-episode symptom levels, should be established.
The clinician should assess what the woman’s response has been to previous and current medications, her adherence to them, the side effects she experienced and what her preferred treatments are. Equally important is the history of psychological treatments, the quality of the therapy and her response to it. Other areas to explore carefully are her physical condition, her social history and current social situation, support from family, friends and neighborhood, any substance misuse, forensic history and her personal characteristics, such as resilience to stress. Should there be insufficient information, time should be invested in obtaining it from an informant and the services with which the patient was previously involved. A preliminary impression of any potential risks to a child should be formed. This should take into consideration any potential parenting problems as well as the woman’s previous childcare history, the relationship with her partner, her social functioning and her wider social environment and supports.
A comprehensive and sensitive psychiatric assessment will not only aid clinical management, but also afford the woman an opportunity to reflect on what her own contributions could be to optimize the outcome of a future pregnancy. Although there are no studies, the experience of many specialists working in this area is that even women with severe mental illness and complex comorbidities can show considerable capacity for change in the desire to achieve the best possible outcome for their children.
Preconception advice and management
The woman should be informed about what is known about the effect of childbearing on her mental illness. In general, pregnancy does not protect from recurrences or new episodes of mental illness. In addition, childbirth is a powerful trigger particularly for bipolar recurrences, new bipolar onsets and the related condition of puerperal psychosis (see Chapters 10, 21). These illnesses typically have a sudden onset within two weeks of childbirth, a markedly fluctuating and rapidly deteriorating course, and are often extremely severe (Jones et al., 2014). An effect of childbirth on the course of schizophrenia and severe depression is also seen, albeit less dramatic (Munk-Olsen et al., 2006; Munk-Olsen et al., 2009). For many women, this means that not only the risks and benefits of taking psychotropic medication in pregnancy, but also the risks and benefits of not taking them, need to be carefully considered. Discussions and decisions will vary greatly between women according to their individual circumstances.
Optimization of nonpharmacological treatments
Nonpharmacological measures to improve maternal and fetal health should be optimized. The relapse prevention plan should be reviewed and updated with the woman. As needed, she should be offered a referral for dietary advice, a smoking cessation clinic or the community treatment team for substance misuse. The need for additional psychological treatment options should be assessed. Smoking cessation in pregnancy is most likely to require more than advice and the ability to attend a clinic in women with more severe mental illness. Personalizing a smoking cessation plan can reduce the rates of relapse.
Discussing the reproductive safety of psychotropic medication
The reproductive safety of psychotropic medication during pregnancy and lactation and prescribing principles are addressed in Chapter 11. It should be emphasized that women who are planning a pregnancy should not be offered valproate or carbamazepine for the treatment of psychiatric disorders due to their fetotoxic potential (National Institute for Care Excellence, 2014; see Chapters 11, 21). Explaining reproductive medication risks to patients is difficult because of the considerable uncertainty of the evidence and conveying the magnitude in a way that is helpful for the patient. Rather than using percentages, the NICE guidelines (National Institute for Health and Care Excellence, 2007) recommend to use natural frequencies, that is, the actual number of pregnancies or children affected (e.g., 1:1,000) and to put the magnitude of the risk into the context of everyday life (e.g., the number of affected children of all those born in this hospital). The use of visual formats can help to convey the individual risk to the woman concerned.
The woman should be informed that, independent of psychotropic medication, 2–4/100 children are born with major congenital anomalies (Nelson & Holmes, 1989). Valproate increases the rate of several major congenital anomalies so that the overall risk of major congenital malformations (MCMs) is markedly increased. Other drugs, such as antidepressants or antipsychotics have been associated with structural defects in one or two particular organ systems and the risks are much smaller. The most common specific anomalies involve the cardiovascular system with a prevalence in the general population of about 1 in 100. In contrast, neural tube defects occur very rarely with an estimated incidence of 1 in 1000 deliveries worldwide (Mitchell et al., 2005). These conditions can lead to a varying degree of functional impairment, from mild to very severe. When quoting background figures, clinicians should also be aware that there can be variation due to regional, cultural and ethnic differences.
Medication and fertility
In the preconception counseling session, any possible effects of the woman’s current psychotropic medication on her fertility should also be evaluated. If she is taking an antipsychotic drug with prolactin-elevating potential, the serum prolactin level should be measured, regardless of whether she has a regular menstrual cycle or not. Antipsychotic-induced hyperprolactinaemia can disrupt normal ovulation and cause subfertility or infertility despite the menstrual cycle appearing to be normal to the patient. Should she have drug-induced hyperprolactinaemia, her antipsychotic could be switched to a prolactin-sparing agent. The switch could be, for example, from risperidone, which has strong prolactin-raising properties to quetiapine, olanzapine or aripiprazole, which have no or only mild effects. If a woman has a history of a strongly preferential response to a prolactin-elevating antipsychotic, there are alternative options to switching the antipsychotic (Haddad & Wieck, 2004). These include the addition of a dopamine agonist, such as bromocriptine or cabergoline, or direct ovarian stimulation. To explore these options, an opinion from a gynecological endocrinologist should be sought.
Potential concerns about parenting competence
Many women with severe or complex mental illness are judged to parent their children successfully, particularly if they have access to social support (Abel et al., 2005). However, if there are any concerns that there will be significant difficulties in parenting, the clinician should raise the possibility with the patient that a referral may have to be made to social care once she is pregnant. Clinicians not experienced in this area may assume that this will damage their therapeutic relationship. Patients, however, often value clinicians talking about these issues openly if this is done with sensitivity. Even if the concerns are serious, it is important that the patient is reassured that she will be supported by mental health services no matter what she decides in regard to childbearing. Some clinicians may have strong preexisting feelings about women with severe forms of mental illness having children and this may cloud their clinical judgment (Coverdale et al., 2004). It is advisable in this situation to refer the patient for a second opinion.
The effectiveness and value of preconception counseling
Clinical experience suggests that few mental health professionals working in general adult psychiatry offer preconception advice (Abel & Rees, 2010). Women who are referred to a perinatal psychiatry clinic tend to have requested it themselves. It has not yet been systematically investigated whether women with severe mental illness find preconception counseling helpful and whether they improve outcome. In a recent uncontrolled retrospective study, the outcome of preconception counseling was investigated in women with bipolar disorder attending such a specialist perinatal psychiatry clinic (Wieck et al., 2010). Pharmacological recommendations and suggestions for a change in psychosocial management were followed by the referring clinician in most cases. In the 12 months after counseling, only 5/26 (19.2%) women experienced a mood episode that fulfilled DSM-IV criteria and all were treated as outpatients, suggesting that medication adjustments made in preparation of pregnancy did not destabilize the illness. It is possible that this favorable outcome arose because of selection bias. Further research is needed in this area.
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