Background
Eating Disorders (ED) are a group of mental health disorders characterised by severe disturbances in eating behaviour that significantly impair health and psychosocial functioning, including Anorexia Nervosa (AN), Bulimia Nervosa (BN) and Binge-Eating Disorder (BED) [
1]. ED typically affect women of reproductive age [
2] and may affect between 5.1-7.5% of women during pregnancy, if subthreshold disorders are included [
3‐
5]. Women with ED tend to experience a decrease in ED symptoms during pregnancy [
6‐
9]. However, there is evidence that symptoms persist [
7,
8] and of postnatal relapse [
6,
8,
9]. Furthermore, depression and anxiety symptoms are common during pregnancy and postnatally for women with current and past ED [
10,
11].
ED have been associated with various adverse pregnancy outcomes, for instance women with AN have higher risk of infertility, unplanned pregnancies, miscarriage, prematurity and low birth weight babies while women with BED have increased risk of higher birth weight babies [
12‐
17]. There is growing evidence of the postnatal impact of maternal ED, such as difficulties with infant feeding [
18‐
20], and behavioural and emotional problems in the infant [
21‐
23].
Given the evidence of adverse outcomes for women and their infants, early identification of ED and appropriate antenatal and postnatal care are highly important. In the UK, National Health Service (NHS) maternity care is informed by a suite of guidance from the National Institute for Health and Care Excellence (NICE). NICE antenatal and postnatal mental health guidance [
24] recommends routine enquiry about current and past severe mental illness with all women, and women with ED should be offered enhanced support and monitoring, and referred to specialist care if needed. Midwives and health visitors are ideally placed to identify and support women with ED as they are the primary point of contact delivering routine care for all women from pregnancy until the child is aged five. In a universal healthcare system such as the NHS where these regular routine appointments are provided, guidelines to support effective identification and management of women with ED should be implemented to reduce risk of poor pregnancy and birth outcomes, however evidence on uptake and use of guidance is limited.
To our knowledge, no previous studies have specifically investigated the barriers to identifying ED in the perinatal period. Evidence suggests that women with ED are often reluctant to disclose their ED to a health professional [
25] and are unlikely to seek treatment [
26], which may be due to feelings of stigma and shame [
27,
28]. One UK-based qualitative study investigating women’s views of antenatal care found that women were reluctant to disclose their ED because they felt health professionals lacked ED knowledge and sensitivity in dealing with the disorder [
29]. A few studies in the US have found poor routine enquiry and knowledge about ED behaviours and symptoms among clinicians, including obstetricians [
30‐
32].
Subsequently, women with ED may go undetected during pregnancy and postnatally, with potential implications for adverse maternal and infant health outcomes if disorders are not managed appropriately. An in-depth understanding of barriers to the identification of ED during and after pregnancy which reflects the perspectives of women and health professionals is needed to assess and inform practice, including implementation of relevant guidelines in to practice.
Objectives
To understand the barriers to disclosure and identification of ED in pregnancy and postnatally as perceived by women with past or current ED, and midwives and health visitors working in the UK NHS.
Discussion
This is the first research to specifically explore the perspectives of women and health professionals on the barriers to identifying ED during and after pregnancy. Our main findings were that perceived stigma had a major impact on women’s disclosure of their illness, and health professionals had low confidence in identifying ED as they lacked evidence-based knowledge and training. The discussion will mainly focus on these outcomes as they were the most prominent, and have direct implications to support effective identification of ED during and after pregnancy.
Consistent with general and pregnancy ED research, women were often reluctant to disclose their ED to a health professional [
25,
29]. Stigma was a key barrier reported by the women in this research, and health professionals similarly felt it hindered discussion and enquiry about ED. Stigma is consistently implicated as a barrier to disclosure and treatment-seeking in the ED and wider mental health literature [
27,
28,
35]. The term stigma involves perceived and experienced stereotyping, prejudice and discrimination to the detriment of the targeted group [
36]. The stigma of mental health is widely recognised, but it can be greater for ED as sufferers are perceived as more responsible and in control of their ED behaviours [
37,
38]. The stigmatising attitudes towards BED specifically are comparable to attitudes towards obesity and overweight status [
39]. Weight stigma is well recognised and reinforced by some of the more pervasive anti-obesity campaigns [
39]. Given the association between BED and obesity [
40], the stigma women with BED experience may be compounded by their weight status. Stigmatising attitudes can contribute to feelings of shame and guilt, which cause an individual to feel personal responsibility for their behaviours. As a consequence, an individual may want to hide their disorder [
41], avoid disclosure and show reluctance to seek help for their ED [
27‐
29].
In the UK, several campaigns have been launched to raise public awareness and reduce stigma about mental health, such as the ‘Time to Change’ campaign [
42], and several initiatives have been launched to address perinatal mental health awareness specifically, such as the ‘Better Births’ initiative [
43]. Similar anti-stigma programmes exist in other countries, such as ‘Beyond Blue’ in Australia [
44], ‘Mental Health Commission of Canada’ [
45], and ‘Bring Change 2 Mind’ in the US [
46], and these, along with other campaigns, have formed a global alliance to reduce mental health stigma [
47]. However, ED continue to be largely neglected in these mental health awareness campaigns. BED is also not considered and neither is the broader issue of weight stigma within the anti-obesity and healthy eating campaigns and clinical guidance [
48‐
50]. The campaigns and clinical guidance [
48‐
50] aimed at addressing the rising prevalence of obesity focus on changing nutrition but not on eating disorder behaviours that might affect nutrition. Considering the high level of comorbidity [
40], the identification of ED perinatally may subsequently support obesity prevention in pregnancy and postnatally. Initiatives are needed to specifically target and address the broad range of ED to reduce stigma, prevent discrimination and raise awareness. Only by raising the profile of ED and reducing stigma will disclosure and open discussion with health professionals be encouraged among women during and after pregnancy who suffer these mental health disorders.
Health professionals considered an important barrier to identifying ED was their lack of evidence-based knowledge and training, which subsequently impacted on their confidence. This finding was not unexpected as ED are not currently specified in the core clinical competencies required as part of pre-registration training of midwives and health visitors in the UK [
51,
52]. This reflects poor integration of available guidance in to pre and post-registration training [
24]. Future curriculum revisions need to educate about the complexity and range of ED and ED behaviours, and include the changes in symptoms that may be experienced during and after pregnancy [
3,
6‐
9]. Research is needed to explore facilitators to disclosure to identify acceptable means of enquiry and management that are sensitive and responsive to the needs of women, and findings need to be incorporated in to future training. Training also needs to address individual attitudes about ED given the expectation for health professionals to deliver care in a consistent manner.
Other system level barriers to identifying ED in pregnancy and postnatally were identified, specifically poor continuity of care and poor communication between health professionals and women, and between health professionals. Women and health professionals described the lack of opportunity and time within routine antenatal and postnatal care contacts to discuss ED in a comfortable way to encourage disclosure, with midwives advocating the potential benefit of a ‘case loading’ model of midwifery care. This model of midwifery care is considered to promote better continuity of care in pregnancy and is advocated in UK policy and guidance [
53,
54] and other countries with similar healthcare systems such as Australia [
55]. Case loading models of midwifery care have been associated with better maternal and infant outcomes, patient satisfaction, and cost effectiveness in comparison to other models of maternity care [
56‐
58], yet provision remains variable [
59,
60]. Poor communication between health professionals was similarly an important barrier as methods of relaying concern about women were complicated by the need to balance communication of crucial information with respecting the sensitive and confidential nature of disclosure. The issue of communication of risk between acute and primary care services is increasingly affected by fragmented and poorly integrated maternity services, particularly in primary care settings with services central to coordinating healthcare [
61]. Addressing these system level barriers could promote an environment conducive to open discussion and support the role of the health professionals in the identification of ED in the perinatal period.
Strengths and limitations
Strengths of this research include the exploration of experiences from both women and health professionals, with consistency in the findings between the two groups. Research findings are likely to be relevant for women who have ED regardless of place of birth, with issues for health professional training likely to be relevant in settings where women can access care from midwives and health visitors or an equivalent health professional.
There are several limitations to the research to be taken in to account when considering the implications of the findings. Convenience sampling was necessary for logistical reasons however, it limits the representativeness of the sample and generalisability of the findings. There may have been recall bias as most women were reflecting on past experiences of antenatal care. The single eligibility question may have been ambiguous in the absence of a clinical diagnosis and did not distinguish between past or current ED. However this type of self-report indicator was used primarily for practical reasons, further it has been validated in an antenatal sample [
62] and no ED screening measures have been validated in pregnancy. Future research could focus on women who have been clinically diagnosed with ED.
Acknowledgements
We are extremely grateful to the women, students, staff, NHS Trusts and Universities that have contributed to this research. We would like to thank NetMums for their support in administering the survey. We would like to thank Dr. Kylee Trevillion for contributions to the data analysis, and Jennifer Elglumati for assistance with data collection. Finally, we are grateful for the support received from the Open Access Funding Team at the University College London Library Services towards publishing this manuscript as an open access publication.