Seeking help from professionals has many layers of difficulty attached. A review of the literature suggests that the experiences of mothers with mental health difficulties accessing services, during pregnancy, childbirth and early motherhood have received little attention in the research and in service development, so there is little basis for confidence that their needs, and those of their children, are being met. Individual narratives and research on women's experiences of mental health difficulties during pregnancy and motherhood suggest that there are a number of significant socio-cultural, professional and service issues that coalesce together, making accessing help and support a large task for a mother experiencing mental health difficulties.
Initial sections of this chapter will present the barriers to accessing services, as identified from 23 published research papers (Appendix 5, Table 6). In addition to factors under the headings of accessibility, accommodation and acceptability, this group of women were unique in having specific problems with the lack of availability and affordability of services also. Finally, facilitators to improve access are presented, although it is notable that only 9 of the published papers discussed facilitators to access, in addition to highlighting numerous barriers (Appendix 5, Table 7).
For women who experience perinatal mental health difficulties, rapid access to appropriate specialist services and treatment is recommended to lessen women's maternal distress and the possible negative impact on the baby (Royal College of Psychiatrists, 2002). Perinatal mental health services should be seamless; embracing a number of specialist areas, and with interdisciplinary working between midwifery, obstetrics, mental health professionals and GP. However, services to women who experience perinatal mental health difficulties are often nonexistent, disconnected, fragmented, difficult to access or inadequate in meeting the specialist needs of mothers (Miller and Finnerty, 1996), and links between maternity and mental health services are weak (Currid, 2004). Consequently, women experience suboptimal perinatal care, with their mental health issues being considered separately from their pregnancy (Miller and Finnerty, 1996). Currid (2004) is of the view that maternity staff focus on biological aspects of pre and post natal care, view pregnancy and childbirth as their domain, and fail to see that maternity care embraces a number of specialist areas.
In a recent study of 152 trusts providing obstetric or midwifery-led maternity services in England, 56% of trusts stated that they held certain antenatal clinics jointly with specialists in substance misuse, and 63% employed specialist midwives to support women who misused substances during pregnancy. Joint clinics were also held by approximately one third of trusts with mental health teams for women with a history of previous postnatal psychosis and psychiatric disorders, 19% employed specialist midwives to care for women with previous puerperal psychosis and 21% had specialist midwives to support women with a psychiatric disorder (Commission for Healthcare Audit and Inspection, 2008). However, 42% of trusts had no access to any specialist perinatal mental health service and in a small number of trusts; the maximum wait for referral of women to specialist mental health services was described as a month, or more.
Across Europe there are wide variations in access and use of services (Chisholm et al, 2004). Despite the recommendations that were made after the Confidential Enquiry into Maternal Deaths (Lewis, 2007) and the comprehensive National Institute of Clinical Excellence guidelines (NICE, 2007), very few existing services in England are resourced to fulfil the recommendations made. Specialist perinatal mental health services are developing in a piecemeal fashion and evidence from a survey of specialist perinatal services in 78 trusts in England highlights inadequacies in provision, specialist training and staffing (Oluwatayo and Friedman, 2005). Of the 57 trusts who responded to this survey, only 13 (23%) had evidence of providing a full range of services, ranging from inpatient units, intensive home treatments to perinatal liaison services. Twenty of the trusts (35%) had designated perinatal multidisciplinary teams, with 11 trusts reporting that they had one or more full time community nurses. Less than 10 trusts reported having the services of a psychologist or social worker, and only 2 had a full-time perinatal psychiatrist; consequently, liaison psychiatrists with a special interest in prenatal health constituted the majority of consultants involved.
In the more recent study by the Commission for Healthcare Audit and Inspection (2008), only 40 of the 152 trusts were able to provide data on the recording of mental health needs by maternity care staff. Only 29 trusts provided data on referrals of women to mental health teams, and the referral rate ranged from 0% to 7% (Commission for Healthcare Audit and Inspection, 2008). Over half (55%) reported that the current mental health status of women on booking was explored using specific questions recommended by NICE (NICE, 2007). However, only 24% of the 4,950 staff surveyed across all trusts agreed, and another 43% agreed to some extent, that there was support for women with mental health needs (Commission for Healthcare Audit and Inspection, 2008).
Despite the report of the Confidential Enquiries into Maternal Deaths (Lewis, 2005) in the United Kingdom identifying the need for women with mental health difficulties to be cared for in specialist mother and baby psychiatric units and not be separated from their baby, Oluwatayo and Friedman (2005) found that only 21 (37%) of the trusts had facilities for admissions of these mothers and their babies. Of these, one third consisted of designated beds in open wards, as opposed to designated units. In the more recent study described above (Commission for Healthcare Audit and Inspection, 2008), 95% of trusts stated that they had some access to a mother and baby unit, which, if accurate, is a remarkable improvement in these facilities in the space of 3 years.
Glangeaud-Freudenthal and Barnett (2004) in a audit of mother and baby units in different countries identified approximately 30 units in the United Kingdom, over 10 units in Australia and New Zealand, and 15 in France and Belgium. In the absence of specialised units, women with mental health difficulties are admitted to mixed sex, acute psychiatric units that are ill equipped to meet their or their baby's specialist needs.
Within Ireland, the Women's Health Council (2005:pg. 7) point out that the mental health services 'are gender-neutral at best, and skewed towards the needs of the male population at worst'. They also highlight the inadequate resourcing of maternity services to deal with postnatal depression. Although there are consultant psychiatric attachments to the 3 main Dublin maternity hospitals, and a Mental Health Liaison Midwife was appointed at The Rotunda Hospital in 2001, there are very few resources outside of the Dublin region and no Mother and Baby Units (WHC, 2005).
The latest NICE guidelines recommend that the full range of therapeutic services, such as psychology, psychiatry, nursing, social work and psychotherapists, should be available to women (NICE, 2007). The lack of availability of such services to suit women's needs is, however, evident in research that explored women's preferences and experience of care. While the majority of the women (n=45) in Zittel-Palamara et al's (2008) study valued counselling, medication, support groups (in-person and online), spiritual assistance, psychiatric and psychology input, few received the care they desired. Although approximately 75% of women wanted assistance from a psychologist and 78% desired care from a social worker for their postpartum depression, less than 25% and 11% were able to access the care they required. Within Ireland, inequalities in the provision of mental health services have been reported (D'Eath et al, 2005), and the expert group on mental health stressed the need to move beyond the current biological and illness-focused mental health services to a more 'biopsychosocial model' of practice. They were of the opinion that 'the artificial separation of biological from psychological and social factors has been a formidable obstacle to a true understanding of mental health... [and resulted in] ...lost opportunities for the provision of psychological and social interventions for people' (Government of Ireland, 2006:pg. 18).
Given the high incidence of unplanned pregnancies among women with serious mental illness, some of these women may have difficulty in recognising or acknowledging that they are pregnant and consequently delay accessing prenatal advice. This may occur especially among women who have erratic menstrual cycles due to the side effects of prescribed medication or substance misuse (Hser and Niv, 2006). Although rare, women with enduring mental health difficulties, such as schizophrenia, who have previously lost custody of children, have been found to deny their pregnancy to avoid the grief associated with anticipatory custody loss (Apfel and Handel, 1993; Nicholson et al, 1998a). Such denial reduces the chances of prenatal care, and increases the risk of postnatal emotional problems including, in some cultures at least, neonaticide[5] (Green and Manohar, 1990; Lee et al, 2006), a circumstance that could be avoided if they felt confident enough to confide in health professionals. A retrospective study of medical records in an urban academic medical centre in Cleveland over a 6-year period showed that, out of 31,475 births, 61 women had denial of pregnancy (0.19%). For 13 of the women (21%), the babies were removed from their custody prior to discharge from the hospital (Friedman et al, 2007).
Seeking help for a health problem requires a level of self-confidence and motivation. The experience of depression, with all of the resulting symptoms such as tiredness, poor self-esteem, lack of motivation, and overwhelming sense of worthlessness, guilt and despair can make accessing help extremely difficult for women, especially when services are so poorly integrated and developed. In Lau and Wong's (2008) study, Chinese women with depressive symptoms were less likely to seek help than women in the non-depressed group, suggesting that a reciprocal relationship exists between symptoms and help-seeking behaviour. In other studies, postpartum depressive symptoms, such as difficulties in motivation and self-confidence, were identified by the women as a barrier to seeking help (Zittel-Palamara et al, 2008). Borjesson (2005) also suggests that feelings of guilt, low self-esteem and hopelessness accompanying depression contribute to women's reluctance to talk about their emotional distress. Depression during pregnancy has also been associated with poor attendance at prenatal care (Mowbray et al, 1995b).
Another possible reason that pre and postpartum mental health difficulties, especially depression during pregnancy, go undetected is that women are not prepared for the possibility of it happening to them. The emphasis on postnatal depression, to the exclusion of other mental health difficulties, may exacerbate women's lack of recognition during pregnancy of depression and other mental health difficulties, such as anxiety. Consequently, pregnant women may not recognise their distress as depression or anxiety, and postpartum mothers may simply attribute their distress to hormonal changes, a 'normal' part of the post natal period or an adjustment reaction to sleep deprivation.
Childbirth educators have a key opportunity to educate women and their partners about the range of possible postnatal reactions, from baby blues to psychosis. In addition to teaching women about managing labour, educators can offer information that will help normalise postnatal emotional experience and recognise if these experiences are becoming too difficult for women to cope with by themselves, and how to seek help. However, both the lack of availability of classes and lack of attendance at such classes exacerbates the problem. Even if available, women report that they receive very little information on mental health issues during prenatal care and have little or no knowledge on how to access health or community resources if needed during the postnatal phase (Buultjens and Liamputtong, 2007).
Locating support services and obtaining information about services can be another major barrier to women accessing support. Lack of knowledge on how to seek help or what service to access was identified as a barrier to receiving care by Zittel-Palamara et al (2008). Almost 16% of the 45 women in this study reported not knowing who to speak to, with an equivalent number seeking help but unable to locate any assistance. Lack of knowledge on services available and the skill set necessary to access service are likely to be more pronounced in some groups of women, such as recent immigrant women (Teng et al, 2007), homeless women, and women with substance abuse or other severe mental health difficulties.
In Ireland, a study of refugee and asylum-seeking women found that they may be at increased risk of depression in the postnatal period due to the added stress of their situation (Kennedy and Murphy-Lawless, 2002). Accessing services requires a level of language proficiency, which is a major issue for some immigrant women. Health care professionals in Teng et al's (2007) study were of the view that lack of fluency in English was a major barrier for immigrant women accessing information on mental health service provision. Language was also reported to be a barrier in providing care. Although translators were helpful when women entered the service, the professionals were of the view that they were not ideal as, in the presence of a third person, important discussions on personal issues, such as mental health difficulties, were often limited in depth.
Routine prenatal and postnatal visits to health professionals such as midwives, public health nurses, paediatricians, or general practitioners provide good opportunities for these health care professionals to establish therapeutic rapport and explore with women their emotional state and experiences of emotional distress. Although pre and post natal mental health difficulties are prevalent they frequently go unrecognised and untreated by health care professionals (Wiley et al, 2004; Sleath et al, 2007).
Kelly and colleagues (2001) found, within a large group of pregnant women they studied (n=186), 38% met the criteria for a mental illness or substance abuse disorder; however, only 43% of these women had symptoms recorded in their charts, 18% had a formal diagnosis, and one third (33%) received any kind of intervention or treatment. Similarly, Chaudron et al (2005) found that 28% (61) of the Hispanic women (n=218) in his study were of the view that they needed help with postpartum depression, however, over 50% (32) reported that their primary doctor or health professional did not speak to them about their feelings. Five of the 6 women in Edwards and Timmons's (2005) study (83%) reported delays in receiving help, as health care professionals (midwives, GP, health visitor) were slow in recognising their distress as postnatal depression or discounted it as a 'normal' part of post birth experience.
Lack of education and awareness amongst maternal healthcare professionals of the significance of known risk factors for mental illness is considered a significant factor in the under-assessment (Lewis, 2007). Others suggest that the problem resides with the biomedical model of communication, which affords professionals little opportunity for psychosocial or emotional discussion (Roter et al, 1999). Under-diagnosis has also been attributed to a failure and reluctance on behalf of professionals to ask women about feelings of depression or hopelessness (Marcus et al, 2003; Sleath et al, 2007). Although obstetricians and midwives (n=20) in Mancini et al's (2007) study in New Mexico (Mancini et al, 2007:pg. 433), were positive about using the Postpartum Depression Screening Scale, they reported feeling uncomfortable discussing depression and expressed concern about 'opening up a can of worms', with which they felt inadequate to deal. Of the 389 paediatricians who returned the survey questionnaire, in Wiley et al's (2004) study in the United States, only 31% expressed confidence in their ability to recognise postpartum depression, with only 7% reporting that they were familiar with screening assessment tools. Not surprisingly, 51% underestimated the incidence of postnatal depression, with 49% reporting receiving little or no education on the topic. Lack of time (69%), lack of office space (57%), lack of referral recourses (43%), and lack of effective treatments (5%) were considered as barriers to screening in practice.
The tendency, internationally, to focus on maternal depression, with the term postnatal depression being used as an all-embracing category for perinatal mental health difficulties (Austin and Priest, 2004), also results in other mental health difficulties such as prenatal depression, anxiety, panic disorder, psychosis, and women with severe mental health difficulties and substance misuse being overlooked (WHO, 2000; Austin and Priest, 2004).
As an outcome of the Inquiry into Maternal Deaths and other reports, the National Institute for Health and Clinical Excellence made a number of recommendations to the National Health Service (NHS) on pre and postnatal care for women including the key priorities of 'prediction and detection' of postnatal mental illness (NICE, 2007:pg. 4). In addition, the Council Report of the Royal College of Psychiatrists into perinatal mental health services stated that perinatal mental health care should incorporate risk assessment and early identification of illness (Royal College of Psychiatrists, 2002). However, in situations where health care professionals screen women, it is clear that they lack the skills to explore with women their emotional needs in a sensitive manner (Shakespeare et al, 2003). There has been much criticism about the way in which the NICE guidelines are being implemented, following complaints from mothers. The Association for Improvements in Maternity Services (AIMS) reported that women were already complaining about the way that healthcare staff questioned them about their psychiatric histories (Robinson, 2007). Despite recommendations for sensitivity in official guidelines from NICE, women report feeling hassled, labelled and stigmatised. As a result their trust in maternity care is being damaged. AIMS asks whether the drive to record all past periods of mental illness will have a positive impact on risk and improve care, or whether the process will increase negative outcomes for women. The evidence from AIMS suggests that this has the potential to increase stigma and increase the risk that women's complaints about poor quality care will be rejected. Those who confide their distress to health visitors frequently regret doing so, and warn their friends to be careful about telling the truth (Robinson, 2007).
Shakespeare et al (2003) interviewed 39 postnatal women, attending 22 community GP practices in Oxford, to explore the acceptability of postnatal screening with the Edinburgh Postnatal Depression Scale (EPDS). Over half of the women (21) found screening unacceptable, felt it was an intrusion and were fearful of the consequence for both themselves and the baby. Consequently, they reported deliberately giving false, and positive, responses. Women were of the view that, because of lack of time, feedback and privacy, the baby clinic was an inappropriate place to assess them in any case. The women in this study also expressed a clear desire for talking about what they were feeling in an open, non-judgemental, supportive environment, as opposed to a question and answer session, which focused on ticking boxes.
Robinson (2007) suggests that identifying women at risk may be fine, if the supportive care that women need follows. However, she is of the view that the 'child protection mania' which currently exists (to 'cover people's backs'), results in health care professionals referring women to social services and social workers, who may be ignorant about maternity care, postnatal mental illness and care of the newborn. This raises questions about the appropriateness of routine screening for perinatal mental health difficulties, as what could have been a positive initiative, in terms of identifying women in need of supportive care, is in fact becoming a barrier to disclosure.
There is extensive research that suggests that people who experience mental health difficulties are stigmatised and suffer discrimination and rejection in relation to employment, housing and health insurance. People who fear the stigma of mental illness often forgo treatment, in an attempt to avoid the label. In the context of women who experience mental illness associated with childbirth the evidence base is sparse. However, what is available suggests that the perceived stigma associated with mental illness is a reality, creating and exacerbating problems for women accessing help and support (Shakespeare et al, 2003; Edwards and Timmons, 2005; Jesse et al, 2008). Women in Jesse et al's study (2008:pg. 9) feared that if they asked for help they would be labelled 'crazy', which would result in 'discrimination' and 'stigmatisation', should their illness become known. Although the 6 women admitted to a mother and baby unit in Edwards and Timmons's (2005) study were positive about their treatment and diagnosis, they were concerned about stigma and discrimination from organisations if, in the future, they had to disclose their illness on emigration or life assurance forms.
Within cultures where mental health difficulties are equated with moral weakness, revealing mental distress is likely to evoke criticism and blame as opposed to empathy and understanding. The Black Caribbean women (n=12) in a United Kingdom study on perinatal depression (Edge and Rogers, 2005; Edge, 2006), suggest that cultural imperatives to be stoic, by minimising and denying psychological distress, is a barrier to Black Caribbean women seeking help with pre and post natal depression. For these women their sense of self was bound up in their ability, as Black women, to cope with adversity. Consequently, they resisted the label of depression, as in one woman's words 'you live to your label' (Edge and Rogers, 2005:pg. 21). Being labelled 'depressed' would result in others regarding them as less competent, threatening their self-concept and social status. The women also suggested that talking about 'your business' outside the family was a cultural taboo and would be perceived as being 'disloyal' to the family. They expressed doubts about the professionalism of counsellors and were of the view that counselling was unlikely to be helpful, due to the unavailability of Black Caribbean counsellors. Hence, they tended to draw on spiritual sources for emotional support as opposed to professional intervention.
Lau and Wong (2008) explored the impact of 'maintaining face' on Chinese women's willingness to seek help for postnatal depressive illness. Findings from this study suggest that Chinese women also prefer to seek help from informal sources, such as family members and friends, as opposed to professionals. In addition, women with a high concern for 'maintaining face' were 1.36 times less likely to seek help during the postnatal period, suggesting that cultural and social issues may result in women minimising or denying their distress. Although an important source of psychological support, the propensity to draw on informal sources of support may have implications for women from other cultures, affecting their willingness to seek help from professionals for psychological problems.
Teng et al (2007) interviewed 16 health care workers in Canada, regarding their experiences of providing care to recent immigrant women with postpartum depression. Participants in this study were of the view that cultural conflicts acted as major barriers. The lack of cultural recognition, especially within non-Western cultures, of postpartum depression as a 'medical problem' requiring intervention, the stigma and shame associated with a 'label' of mental illness, and the cultural imperative that family issues are not discussed outside the home, may result in many women denying their distress, for fear of being alienated or bringing shame on themselves and their family. In addition, a lack of spousal support and validation of the need to seek help was also viewed as a barrier.
Montgomery (2005) asserts that women with mental health difficulties are viewed as the wrong women giving birth in the wrong circumstances. Consequently, a significant barrier to women disclosing their distress is a fear of being judged as a 'bad' or 'poor' mother; this fear has been found to undermine women's willingness to disclose to friends, families and professionals, which in turn leads to self-exclusion, withdrawal, decreased social networks, and reducing emotional support (Edhborg et al, 2005; Edwards and Timmons, 2005; Davies and Allen, 2007; Jesse et al, 2008).
Women who have experienced a mental health difficulty before pregnancy report being victims of stigma and negative societal attitudes from friends, family and health professionals, even before they get pregnant. They are aware that the very idea of them displaying the normal desire to bear children is perceived as selfish, with an automatic assumption that they will not be 'stable enough to function as a mother' (Perkins, 2003:pg. 157). Consequently, these women automatically encounter the medical discourse of 'relapse risk' from both family and professionals. Women are strongly advised that a worsening or relapse of 'illness' must be avoided at all costs and are continuously advised not to get pregnant, for fear of a recurrence of their illness (Nicholson et al, 1998a), with others being made to feel that getting pregnant and remaining healthy is merely a 'pipe dream' (Perkins, 2003:pg. 157). Once pregnant, women report experiencing reactions including disapproval, ambivalence and anger (Blanch et al, 1994; Mowbray et al, 1995a). Consequently, the fear of negative reactions acts as a powerful barrier to these women seeking help and support, and may result in women delaying accessing prenatal care.
Family members can be a powerful source of support to women, or a source of tension and conflict. Women report that family members who do not understand their mental health difficulties are angry, resentful and blame them for problems that arise with children. In some cases family members, cast the mother in a 'sick role', undermining the women's efforts to parent or recover, by making decisions about children without consulting or considering the mother's wishes (Nicholson et al, 1998c). The long term consequence of this behaviour frequently result in women internalising societal and family assumptions about incapability and incompetence (Fox, 2004; Schen, 2005). As a consequence, mothers are less likely to seek help when needed from family and report difficulty trusting their own assessments of their children's needs, their ability to meet them and the confidence to advocate for themselves or their children (Mowbray et al, 1995a; Nicholson et al, 1998b). In addition, if women were admitted to in-patient units, these were seen as inappropriate places for children to visit, due to the lack of facilities for children, such as family rooms separate from wards (Nicholson et al, 1998a; Diaz-Canjela and Johnson, 2004). This often prevented mothers from maintaining contact with their children during an admission, resulting in further difficulties in relationships.
The conflict between what society constructs as 'competent' 'good' and 'nurturing' mothers, and women's experiences of emotional emptiness, distress and inability to care for a new born, leave women feeling they have no one to turn to. Women who disrupt the myth of the 'ideal mother' or who do not feel overwhelming joy and love for their newborn infant, find motherhood tiring and stressful, and continually report feelings of inadequacy, stigma and shame (Nicholson et al, 1998b; Diaz-Canjela and Johnson, 2004; Edhborg et al, 2005; Buultjens and Liamputtong, 2007). Women are of the view that both the public and professionals start from the assumption that women with mental health difficulties are unlikely to be adequate mothers, making it extremely difficult for women to seek help voluntarily (Diaz-Canjela and Johnson, 2004).
Although mothers would like to consider health care professionals as a source of support, they continually report a reluctance to admit to any feeling of stress or depression. To acknowledge mental health difficulties is akin to admitting failure as a mother. In many cases, women felt they had to guard against health professionals making moral judgments about them (Montgomery et al, 2006; Davies and Allen, 2007) and feared being thought of as 'unable to take care of the kids' (Heneghan et al, 2004:pg. 464). Mothers without a diagnosis of a mental health difficulty, attending community and hospital paediatric practices in the U.S.A. repeatedly described a fear that the paediatrician would interpret their request for help as a threat to their child's safety and, as a consequence, would refer them to a child protection agency. Mothers in lower socioeconomic groups were particularly fearful of social work interventions, because of a belief that the primary function of the social worker was to remove the child from the home as opposed to acting as a resource for help and support (Heneghan et al, 2004).
Mental illness is the antithesis to the stereotypical mother, falling as it does outside the romantic ideology of the 'ideal' mother (Montgomery et al, 2006). Western culture asserts that all 'normal' women feel a strong maternal instinct, want to have babies, and that birth and motherhood is an immensely joyous, blissful and happy occasion. Ugarriza (2004) points out that the inability to experience joy at being a mother is often a source of community scorn and individual shame. In addition, mothers who experience mental health difficulties are often portrayed as unable to care for their children, dangerous, violent and dislikeable (Krumm and Becker, 2006). Media representation plays an important role in perpetuating the perception of women with mental health difficulties as incompetent mothers. Within the media, the representations of mothers with mental health difficulties as 'mad' (Apfel and Handel, 1993) 'bad' (Swigart, 1991) or 'toxic' (Oates, 1997) contributes to women being viewed as a homogonous group of 'defective parents', requiring constant and sustained monitoring. Such derogatory terms also highlight the perceived differences that exist between mothers with a diagnosis of mental illness and mothers without.
This fear of being perceived as an incompetent mother was a consistent theme within studies of women with mental health difficulties, such as postnatal depression (Ugarriza, 2002; Shakespeare et al, 2003; Ugarriza, 2004; Edwards and Timmons, 2005) and was even more pronounced within studies of women with enduring mental health difficulties (Nicholson et al, 1998c; Perkins, 2003; Montgomery, 2005; Davies and Allen, 2007). Other women reported immense shame about experiencing negative feelings towards their baby and wanting time for themselves. The women (n=22) in Edhborg's study also spoke of the immense pressure they experienced to breastfeed and the deep sense of being a 'bad mother', when their struggle with depression resulted in them stopping breast-feeding (Edhborg et al, 2005).
Women reported constantly feeling under pressure to prove their mothering competence and were very reluctant to reveal a mental health difficulty or seek help with parenting for fear of allegations of poor mothering practice, which could result in loss of custody of, or access to, children (Hendrick and Daly, 2000; Montgomery et al, 2006; Davies and Allen, 2007). While some mothers with enduring mental health difficulties may have difficulties, it is possible, if provided with adequate resources, for many such women to care successfully for their children (Mullick et al, 2001). The literature provides evidence of custody loss rates of between 38% and 89% (Mowbray et al, 1995b; Cogan, 1998; Joseph et al, 1999; Sands et al, 2004). Hollingsworth (2004:pg. 199) asserts that a diagnosis of persistent mental illness (schizophrenia, schizoaffective disorder, bipolar disorder with or without psychosis, and major depression with or without psychosis) is increasingly being used to 'fast track' the termination of parents' right to the custody of their children.
Viewing services as a source of power over their lives, as opposed to a source of help and support, appears to be a major barrier to women's willingness to access services and help. Fearing the power of agencies to take children into care constitutes one of the most serious barriers to women being open about their distress. Throughout the research women spoke of the risks of admitting the need for mental health care, as they perceived that this would give professionals the idea that they were not coping adequately and were 'unfit' mothers. In the current context of mandatory reporting, which requires health care professionals to report any concerns regarding child abuse, this fear is increasing.
Anderson et al (2006) conducted interviews with 127 low income mothers in Australia and reported that fear of custody loss resulted in a major reluctance among these women to accessing help from mental health professionals. Seventeen of the 22 women (77%) in Diaz-Canjela and Johnson's (2004) study also reported a reluctance to initiate any discussion with health or childcare services on their struggles as a mother, for fear of loss of custody. Fears around custody loss were especially acute for women who had previously lost custody of a child, as they lacked trust in the health professionals, especially if they had a past role in their loss. Montgomery et al (2006) studied the mothering experiences of 20 women with enduring mental health difficulties in Canada. The women in this study described how seeking help or acknowledging the need to take medication or agree to a hospital admission was a precarious balance between risks and benefits. An admission to an inpatient service could offer time for healing, rest and recovery; on the other hand it meant being away from home, having others care for children, and increasing the risk of 'having the kids taken away from you' (Montgomery et al, 2006:pg. 25). Hser and Niv (2006) highlight the multiple fears experienced by pregnant women with substance abuse problems. Not only does the fear of loss of custody of children act as a barrier to prenatal services, but these women also have to contend with the fear of criminal action and the stigma associated with substance abuse.
Effective and empathetic communication is a core aspect of quality health service delivery, and is a significant issue in building trust with women who experience mental health difficulties. If women experience sensitive, trusting, empathetic relationships with health professionals they are more likely to disclose their distress. However, lack of trust of health care providers was one of the most frequently cited barriers to seeking help by the 30 women in Jesse et al's (2008) study. Nineteen (63%) of the women in this study were of the view that health care professionals were not to be trusted with information and were concerned about confidentiality. The lack of trust was more pronounced among African American women than Caucasian women. Suspicion around the trustworthiness and professionalism of counsellors was also an issue for Black Caribbean women (Edge and Rogers, 2005), suggesting that there are racial disparities in barriers. Women in these studies were of the view that simply telling women that information is confidential is not sufficient, health care professionals need to build rapport with women, by demonstrating care and empathy. The need to provide culturally sensitive counselling, by utilising counsellors for different racial backgrounds, and acknowledging the centrality of spiritual support in some women's lives was also emphasised.
For many women who experience mental distress, prescribed medication in the form of anti-depressants and or anti-psychotics form part of their treatment regime. The fear of being prescribed medication was a significant barrier to accessing services for the Black Caribbean women in Edge (2006) and Edge and Rogers's (2005) study. Women believed that if they attended a GP, anti-depressant medication would be the only treatment offered, leading to a downward spiral of addiction, increased medication and eventually a serious mental illness. This fear stemmed from previous negative experiences with health care professionals and perceptions that black people are discriminated against and subjected to unequal and inappropriate treatments by health professionals. Evidence from research in other areas of mental health suggests that that these fears are well founded. It is estimated that women are twice as likely to be prescribed psychotropic drugs as men, and less likely to be referred for specialist mental health care (WHC, 2005). In addition, black people are more likely than white people to be hospitalised through compulsory order, to be treated in a more coercive manner, and to receive higher levels of physical interventions, such as electro-convulsive therapy and drugs (Pilgrim and Rodgers, 1999).
Many psychotropic drugs, such as mood stabilisers can be a teratogenic risk to the fetus. The NICE (2007) guidelines emphasise the need to discuss with women the risks associated with becoming pregnant while on medication and the risk associated with stopping medication abruptly or in a controlled manner. Despite this the evidence suggests that women are not informed about their medications and often struggle alone with the dilemma of stopping medication and risking their own mental health, or continuing the medication and worrying about exposing the fetus or baby to harmful effects (Thomas, 1997; Chernomas et al, 2000). Einearson et al (2001), in their Canadian study, found that of the 36 women involved, 34 (94%) had discontinued psychiatric medication abruptly for fear of birth defects and harming their baby. As a consequence, many of the women suffered both physical and psychological adverse effects, including suicidal thoughts. In the majority of cases the women stopped their medication on the advice of a doctor (family physician or psychiatrist), who in their haste to ensure a 'drug free pregnancy' may not have considered fully the consequences of their actions. Conflict over taking anti-depressant medication and breast-feeding was also an issue for women, postnatally. Women reported fearing transmitting the medication to the baby during breast-feeding or fearing that medication would disrupt the breast-feeding experience (Ugarriza, 2002). Consequently, some of the women in Ugarriza's (2002:pg. 232) study stopped taking medication because they did not want to 'fail' at breast-feeding, perceiving themselves to have already failed the test for being a 'good mother'.
Women also expressed concern about having to be maintained on medication to prevent relapse. The women in Montgomery et al's (2006) study spoke of the medication as simply 'masking' symptoms, without having any appreciable effect on their 'suffering'. Women in 2 other studies (Chernomas et al, 2000; Diaz-Canjela and Johnson, 2004) described how the medication slowed them down, reduced their concentration and impaired their ability to look after their children. Fatigue also prevented them from attending to their own appearance and personal grooming. Consequently, some women made decisions to forgo medication that was slowing them down so that they could parent and breastfeed (Nicholson et al, 1998c; Brunette and Dean, 2002). Although medication may be necessary in the acute phase of illness, the over-reliance on and imposition of the biomedical solutions in the treatment and prevention of relapse may increase women's reluctance to access services and/or encourage them to disengage from services prematurely.
For mothers with low income and inadequate transportation, an inability to pay travel costs and childcare can be another barrier and added stress (Anderson et al, 2006). Difficult getting transport to and from appointments and not being able to afford a babysitter was also highlighted in Teng et al's (2007) study on immigrant mothers. The lack of crèche facilities and the inappropriateness of some mental health environments for children were seen as major barriers to engaging with services as women were unable to bring their children to their consultation ( Nicholson et al, 1998a; Diaz-Canjela and Johnson, 2004). These barriers are exacerbated among mothers with severe mental health difficulties, as they are, typically, not just in receipt of low income, but in addition are parenting alone. Lack of health insurance has also been cited as a barrier to accessing services (Sobey, 2002). Thus the financial burden of accessing support cannot be underestimated, especially for low income, unwaged or recently immigrant women. A recent study in England found that 70% of the 152 trusts surveyed said they would provide home antenatal or postnatal visits for women with mental health needs (Commission for Healthcare Audit and Inspection, 2008), which would be very helpful.
Only 10 published papers presented facilitators to access, in addition to highlighting numerous barriers. The literature provided very little in the way of suggestions to improve the availability of services, except possibly the exhortation to close the gap between policy, aspiration and service provision and to provide training and education of health professionals (Shakespeare et al, 2003), which might improve communication between professionals in maternity services and those in mental health care. The introduction of telesupport or web-based support groups (Ugarriza, 2002) might also increase the care provided in the community, albeit through lay involvement rather than through health service funded initiatives. The suggestion of providing designated perinatal multidisciplinary teams in the community (Oluwatayo and Friedman, 2005) would make a significant difference to women suffering mental health difficulties in pregnancy or the postnatal period. Assistance from psychologists and social workers (Zittel-Palamara et al, 2008) would also assist women with postpartum depression.
For women who experience postnatal mental health difficulties, rapid access to appropriate specialist services and treatment is recommended to lessen their distress and the possible negative impact on their babies (Royal College of Psychiatrists, 2002). The report of the Confidential Enquiries into Maternal Deaths (Lewis, 2007) identified the need for women to be cared for in specialist mother and baby psychiatric units and not separated from their baby. However, specialist mother and baby units are few and far between in the United Kingdom (Robinson, 2005) and nonexistent in Ireland (NWCI and NDA, 2005). Consequently, women are admitted to mixed sex, acute psychiatric units that are ill equipped to meet their or their babies', special needs.
Very little work has been carried out to identify facilitators in this area and, given the negative effects of a mental health condition; it is hard for many of these women to motivate themselves to access services, especially if they are fragmented or nonexistent. The development of greater trust between health professionals and the women presenting at services is, however, one option that is likely to facilitate increased attendance (Jesse et al, 2008).
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The main suggestions provided by the literature were to provide education for women about postnatal illness and the services available to them (Buultjens and Liamputtong, 2007) and to provide support groups for mothers (Ugarriza, 2002; Diaz-Caneja and Johnson, 2004). Certainly, meeting other women with similar experiences was found to be a positive experience in one small study in the United Kingdom (Edwards and Timmons, 2005).
This was the largest section, with the most barriers described, yet there is little literature presenting suggestions of how to facilitate an improvement in acceptability of services for these women. Many of the barriers stemmed from society's and the families' attitudes to mental health, which would be hard to change. Family meetings (Diaz-Caneja and Johnson, 2004) may assist in developing understanding and acceptance among relatives, which may in turn help women to come to terms with their situation.
Training and education of health professionals (Shakespeare et al, 2003) may help to change attitudes and foster greater trust between health professionals and women attending their services (Jesse et al, 2008). Continuity of care (Heneghan et al, 2004) has also been shown to increase the trust felt by women and is recommended.
In the few studies located that asked women what type of help and support they would benefit from, all were looking for supportive partnerships with professionals. Women wanted to be treated with respect, and have their strength acknowledged. The need for professionals to see mothers as not just an 'illness', but as people living and surviving often in difficult and challenging personal and social circumstances, was emphasised. Women expressed a desire for more family meetings, help in communicating with their children, especially about their mental illness. In addition parenting skills training, occasional respite services, and early intervention with ongoing support were highlighted. The value of peer support was recognised by women who requested opportunities to meet other mothers in a group context to share experiences, and activities for children to meet other children in similar situations (Nicholson and Henry, 2003; Diaz-Canjela and Johnson, 2004). In addition, there is some suggestion that counselling services are more acceptable to most women than drugs, and non-national women prefer to have access to counsellors from their own cultural background (Edge and Rogers, 2005; Edge, 2006).
Again, there were few suggestions put forward, but one paper recommended providing childcare facilities at clinics (Ugarriza, 2004) to decrease the cost of attending for visits, which might increase attendance. Providing practical help with mothering (Diaz-Caneja and Johnson, 2004) would also be beneficial.
Women with mental health difficulties appear to suffer far more barriers to accessing services than do women with other disabilities. This may be solely because the experiences of women with mental health difficulties are better documented; however, the availability of appropriate care is certainly less and there are poor links between maternity and mental health services. Due to the women's mental state, they may lack motivation to attend clinics or they may even, rarely, deny the pregnancy totally, which can lead to postnatal emotional problems.
Many women are ignorant of the existence of antenatal mental health difficulties and have only a slight knowledge of postnatal mental disorders. They lack knowledge of the services available to them and, due to their illness, may be reluctant to seek help. As screening practices in maternity settings are uniformly poor, and maternity care professionals are not very knowledgeable about mental health issues, many women will not have a timely diagnosis and referral made.
Even when diagnosed, many women are afraid to admit to their illness, due to society's, and their family's, stigmatisation of mental health disorders. This delays help-seeking actions and prolongs their illness. In addition, women fear being judged 'a bad mother' and, in particular, are afraid that they will lose custody of their child. Because of this, they do not trust health care providers and feel that they are continually having to prove themselves to the authorities. Other barriers stem from a reluctance to take medication, fearing that it will cause addiction, affect the fetus or baby while breast-feeding, or impair their ability to care for their children. Finally, these women tend to be from low income families and costs of childcare and transport may prevent them from accessing health care services.
Few facilitators to improve access to services were mentioned in the literature, but those that were included the provision of childcare facilities, education of health professionals, the introduction of support groups and the provision of designated perinatal multidisciplinary teams in the community. Better communication and continuity of care from health professionals could assist in developing more trust with their clients. Family meetings are recommended to assist in developing understanding and acceptance among relatives, and counselling services are more acceptable to most women than drugs.
This chapter has demonstrated clearly that there are many deficiencies in the care provided for women with mental health difficulties in pregnancy, childbirth and early motherhood. More research on what measures would provide effective support would be valuable.
[5] Neonaticide is the killing of a baby at birth, or (an extension of the definition) within the first 4 weeks of life