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Barriers to identifying eating disorders in pregnancy and in the postnatal period: a qualitative approach

Barriers to identifying eating disorders in pregnancy and in the postnatal period: a qualitative... Background: Eating Disorders (ED) are mental health disorders that typically effect women of childbearing age and are associated with adverse maternal and infant outcomes. UK healthcare guidance recommends routine enquiry for current and past mental illness in antenatal and postnatal care for all women, and that pregnant women with a known ED are offered enhanced monitoring and support. Midwives and health visitors are ideally placed to identify and support women with ED as they are often the primary point of contact during the antenatal and postnatal periods. However, research on the barriers to identifying ED in the perinatal period is limited. This study aimed 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 National Health Service. Methods: Two studies were undertaken: mixed-measures survey of pregnant and postnatal women with current or past ED; focus groups with student and qualified midwives and health visitors. Results: Five themes emerged on the barriers to disclosure in pregnancy as perceived by women: stigma, lack of opportunity, preference for self-management, current ED symptomatology and illness awareness. Four themes were identified on the barriers to identification of ED in pregnancy and in the postnatal period as perceived by health professionals: system constraints, recognition of role, personal attitudes, and stigma and taboo. Conclusions: Several barriers to the identification of ED during and after pregnancy were described, the main factors were stigma and poor professional training. Perinatal mental health is becoming increasingly prioritised within national policy initiatives; however, ED continue to be neglected and increased awareness is needed. Similarly, clinical guidance aimed at responding to the rising prevalence of obesity focus on changing nutrition but not on assessing for the presence of ED behaviours that might be affecting nutrition. Improving education and training for health professionals may contribute to reducing stigma and increase confidence in identifying ED. The barriers identified in this research need to be addressed if recognition and response to women with ED during the perinatal period is to improve. Keywords: Eating Disorders, Pregnancy, Barriers, Disclosure, Identification, Qualitative research Background Nervosa (BN) and Binge-Eating Disorder (BED) [1]. ED Eating Disorders (ED) are a group of mental health dis- typically affect women of reproductive age [2] and may orders characterised by severe disturbances in eating be- affect between 5.1-7.5% of women during pregnancy, if haviour that significantly impair health and psychosocial subthreshold disorders are included [3–5]. Women with functioning, including Anorexia Nervosa (AN), Bulimia ED tend to experience a decrease in ED symptoms dur- ing pregnancy [6–9]. However, there is evidence that symptoms persist [7, 8] and of postnatal relapse [6, 8, 9]. * Correspondence: a.bye@ucl.ac.uk Furthermore, depression and anxiety symptoms are Population, Policy and Practice, UCL Great Ormond Street Institute of Child Health, 30 Guilford Street, WC1N 1EH, London, UK common during pregnancy and postnatally for women Centre for Implementation Science, Health Service and Population Research, with current and past ED [10, 11]. Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 2 of 10 ED have been associated with various adverse preg- Objectives nancy outcomes, for instance women with AN have To understand the barriers to disclosure and identifica- higher risk of infertility, unplanned pregnancies, miscar- tion of ED in pregnancy and postnatally as perceived by riage, prematurity and low birth weight babies while women with past or current ED, and midwives and women with BED have increased risk of higher birth health visitors working in the UK NHS. weight babies [12–17]. There is growing evidence of the postnatal impact of maternal ED, such as difficulties Methods with infant feeding [18–20], and behavioural and emo- Two studies were undertaken: tional problems in the infant [21–23]. Given the evidence of adverse outcomes for women Study 1 and their infants, early identification of ED and appro- Design and setting priate antenatal and postnatal care are highly import- A mixed-measures survey of pregnant and postnatal ant. In the UK, National Health Service (NHS) women with current or past ED was conducted over a maternitycare is informedbya suiteof guidance from seven-month period. Women were recruited via a national the National Institute for Health and Care Excellence parenting website, Netmums, which is a UK-based online (NICE). NICE antenatal and postnatal mental health parenting organisation with over 1.7 million members. guidance [24] recommends routine enquiry about Ethical approval was granted by the University College current and past severe mental illness with all women, London’s Research Ethics Committee (Ref. 3735/002). and women with ED should be offered enhanced sup- port and monitoring, and referred to specialist care if Recruitment and procedure needed. Midwives and health visitors are ideally placed The study employed convenience sampling by inviting to identify and support women with ED as they are the women to voluntarily take part in an online survey via a primary point of contact delivering routine care for all study advertisement on the organisation website. Before women from pregnancy until the child is aged five. In a commencing the survey, women were asked to read the universal healthcare system such as the NHS where information about the study displayed on the website. these regular routine appointments are provided, guide- To be eligible, women had to answer yes to “Do you lines to support effective identification and manage- have, or have you had an eating disorder?”, and respond ment of women with ED should be implemented to to “How many children do you have?” with either the reduce risk of poor pregnancy and birth outcomes, number of children or that they are currently pregnant. howeverevidenceon uptakeand useof guidance is For women who were eligible and willing to take part, limited. consent to participate was implied by virtue of survey To our knowledge, no previous studies have specific- completion. The survey was developed specifically for ally investigated the barriers to identifying ED in the this study, and questions of interest were a combination perinatal period. Evidence suggests that women with of seven Likert-type scale questions and an open-ended ED are often reluctant to disclose their ED to a health question (see Additional file 1). professional [25] and are unlikely to seek treatment [26], which may be due to feelings of stigma and shame Participants [27, 28]. One UK-based qualitative study investigating A total of 101 women completed the mixed-measures sur- women’s views of antenatal care found that women vey, the majority of whom were not currently pregnant were reluctant to disclose their ED because they felt and already had children and had experienced an ED in health professionals lacked ED knowledge and sensitiv- the past or currently (n = 92; see Table 1). The sample ity in dealing with the disorder [29]. A few studies in consisted of women from across the UK, with a range of the US have found poor routine enquiry and knowledge age and educational attainment reflected. about ED behaviours and symptoms among clinicians, including obstetricians [30–32]. Analysis Subsequently, women with ED may go undetected Data were analysed using the thematic analysis approach during pregnancy and postnatally, with potential impli- described by Braun and Clark [33]. This approach is an cations for adverse maternal and infant health outcomes inductive and iterative process involving six phases of if disorders are not managed appropriately. An in-depth analysis: familiarisation with data, generation of initial understanding of barriers to the identification of ED codes, searching for themes among codes, reviewing during and after pregnancy which reflects the perspec- themes, defining and naming themes, and producing the tives of women and health professionals is needed to as- final report. Data were independently coded by two re- sess and inform practice, including implementation of searchers (AB and KT), both of whom were trained in relevant guidelines in to practice. qualitative research methods and analysis. The rating- Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 3 of 10 Table 1 Study 1: Sample characteristics Table 1 Study 1: Sample characteristics (Continued) Characteristics N (%) N = 101 Characteristics N (%) N = 101 Age Binge eating 21 (21%) ≤ 24 21 (21%) Calorie restriction 27 (27%) 25-35 55 (55%) Excessive exercise 12 (12%) ≧36 24 (24%) Low weight 15 (15%) Missing 1 Health professional aware of eating disorder Parity Yes 22 (22%) Currently pregnant 9 (9%) No 62 (61%) 1 child 39 (39%) Unsure 16 (16%) 2 children 37 (37%) Missing 1 ≧3 children 16 (16%) Informed health professional about eating disorder Missing – Yes 26 (26%) Location No 72 (71%) England Missing 3 London 16 (16%) Midlands and East of England 18 (18%) pair familiarised themselves with the data and independ- North England 26 (26%) ently coded the complete data set to ensure reliability and South England 24 (24%) thoroughness, ensuring full consideration could be given Wales 6 (6%) to patterns within the data. The pair discussed their codes together, with an 89% agreement being achieved by the Scotland 5 (5%) rating-pair. At this stage, codes with similar information Northern Ireland 3 (3%) were grouped, discrepancies discussed, and agreement Missing 3 sought before amendments were made and emerging Education themes sought. The process was iterative throughout, with GCSE or equivalent 27 (27%) continual reference to the original data to validate and re- A level or equivalent 28 (28%) fine emerging themes. The themes were then clustered into subordinate themes, and finally superordinate Degree or above 44 (44%) themes. The research team contributed to the refining, Missing 2 naming and interpretation of the themes. Quotes that Type of eating disorder were illustrative of the themes and subthemes are pre- Anorexia Nervosa 34 (34%) sented in the results and additional files. Bulimia Nervosa 16 (16%) Binge Eating Disorder 24 (24%) Study 2 Design and setting Eating Disorder Not Otherwise Specified 25 (25%) Focus groups with student and qualified midwives and Missing 2 health visitors were conducted over a seven-month Any eating disorder symptoms experienced during pregnancy period at participating universities and NHS hospital No 36 (36%) and community services in the South of England. Ethical Yes 64 (63%) approval was granted by the University College London’s Missing 1 Research Ethics Committee (Ref. 3735/001) and the Joint Research and Development Office for Great Ormond Eating disorder symptoms experienced during pregnancy Street Hospital for Children NHS Foundation Trust & Purging 12 (12%) The UCL Institute of Child Health (Ref. 11BS33). Binge eating 29 (29%) Calorie restriction 31 (31%) Recruitment and procedure Excessive exercise 14 (14%) A convenience sampling strategy was employed to recruit Low weight 17 (17%) participants to the focus groups. Student midwives were recruited from across three universities, and student Eating disorder symptoms that improved during pregnancy health visitors from one university. Qualified midwives Purging 16 (16%) were recruited from two hospital and community services, Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 4 of 10 and qualified health visitors from one community service. Table 2 Study 2: Sample characteristics Five focus groups were conducted, with one group per Characteristics N (%) N =33 professional group, except for qualified midwives who re- Age quired two separate groups to be conducted as staff were ≤ 24 4 (12%) unable to travel between the two locations due to time 25-35 11 (32%) and resource constraints. Participants provided written in- ≧36 12 (35%) formed consent prior to taking part in the focus group. Missing 7 The focus groups were facilitated by AB. The focus group topic guide was developed specifically Gender for this study and refined by the research team and other Female 32 (97%) experts, including researchers with qualitative research Male 1 (3%) experience and training and clinical specialists in ED, Ethnicity midwifery and health visiting. The guide facilitated an White 24 (73%) informal discussion in each focus group on attitudes, Black 5 (15%) knowledge, and clinical practice on identifying ED in pregnancy and in the postnatal period, focusing on the Asian Indian 1 (3%) role of midwives and health visitors (see Additional file 2). Mixed ethnicity 1 (3%) Health professionals were not asked directly if they had Missing 2 a personal experience of ED. Professional category Student Participants Midwife 5 (15%) Thirty-three health professionals took part in the focus groups, the majority of whom were qualified health pro- Health Visitor 5 (15%) fessionals (see Table 2). The sample was predominately Qualified white, female and over twenty-five years of age. The ma- Midwife 14 (42%) jority had trained in the UK and as part of that training Health Visitor 9 (27%) had been educated in perinatal mental health, however Training for current post in the UK only a small proportion had received training specifically Yes 28 (82%) in ED (n = 10; 29%). No 3 (9%) Analysis Missing 3 The focus group discussions were recorded and tran- Previous nurse training scribed verbatim with identifying material removed. Data Yes 19 (56%) were analysed following the same procedure as detailed No 12 (35%) for Study 1 using a thematic analysis approach [33]to Missing 2 refine the emerging themes. The data were independ- ently coded by two trained researchers (AB and MKM) Received training in perinatal mental health and a percentage agreement of 79% was achieved by the Yes 24 (71%) rating-pair, with discrepancies resolved in the same man- No 5 (15%) ner as detailed for Study 1. Missing 5 Received training specifically in ED Results Yes 10 (29%) Study 1 Women reported experiencing some improvements in ED No 21 (62%) symptoms during pregnancy, however over half of the Missing 3 sample reported experiencing any ED symptoms during pregnancy (n = 64; 63%), most common was calorie re- striction and binge eating. Only a quarter (n = 26; 26%) of women: stigma, lack of opportunity, preference for self- the sample reported disclosing their ED to a health profes- management, current ED symptomatology and illness sional involved in their antenatal care, and of the seventy- awareness (see Additional file 3). two (71%) women who did not disclose, seventy-one (70%) explained their reasons for not doing so (see Stigma Table 1). The findings generated five themes on the bar- Stigma of ED was an important theme for women’snon- riers to disclosure of ED in pregnancy as perceived by disclosure to a health professional. Many women reported Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 5 of 10 that they felt shameful and embarrassed and feared judge- Illness awareness ment. Some women described feeling judged by health For several women, disclosure of an ED was dependent professionals based on their physical appearance, as illus- on their awareness of ED and acknowledging that their trated by one woman who stated: “I was overweight ac- symptoms were that of an ED. This was particularly not- cording to my BMI. I didn’t think they would believe me to able in women with BED as retrospectively some consid- tell them I had an actual problem. I was patronised by ered that they had dismissed their binge eating behaviours more than one healthcare professional who tried to edu- as general over eating: cate me on nutrition. I got the impression they thought I “Binge eating doesn’t seem like that big of an issue and was just lazy and ate junk food all of the time when this I’ve never seen it as an eating disorder before” W4. wasn’t the case. I felt they were too judgemental to ap- “I have only really just recognised that I have an issue proach” (W42). A few women expressed concern that a & at the time I was pregnant did not realise. I just disclosure would lead to unwanted referrals to social ser- thought I was a greedy person” W34. vices and other services: “I would have been to worried to discuss with my midwife etc. for fear of being reprimanded Study 2 for it (i.e. referred to social services” (W49). Four main themes emerged on the barriers to identi- fication of ED in the perinatal period as perceived by health professionals: system constraints, recognition of Lack of opportunity role, personal attitudes, and stigma and taboo (see Several women expressed a lack of opportunity to dis- Additional file 4). close and discuss an ED with a health professional. It was felt there was limited and insufficient enquiry by System constraints health professionals as “they didn’t ask and it wasn’t System constraints and associated sub-themes were the raised as a concern” (W67). One woman expressed diffi- dominant theme affecting the identification of ED culties in establishing a rapport with a midwife that may among health professionals. All the professionals re- have facilitated a disclosure: “I didn’t have the same mid- ported receiving minimal, if any training on ED as part wife for long enough to speak to them, it was rather of their pre or post-registration clinical education, as stressful and upsetting” (W21). one participant described: “I know what an eating disorder is but I’ve not come across it through my health visitor training” (P7). Some health professionals felt Preference for self-management knowledge had to be inferred from other taught topics Some women reported not disclosing their ED to a as ED were not specifically addressed, as illustrated by health professional as they did not need or want special- one qualified midwife involved in midwifery education: ist care and preferred to self-manage their disorder: “I “it wouldn’t be a module…it would be linked into mental don’t like to talk about it and think I can manage on my ill health or BMI” (P22). Several qualified and student own” (W26), and “I just wanted to deal with it myself” participants reported receiving training, but considered (W36). In some cases, this feeling appeared to relate to that this was a general introduction to ED which was how long their ED had been undetected for: “I don’t not specific to women during or after pregnancy and did really like to talk about it I have had some sort of disor- not clarify their clinical role in identifying or managing dered eating for a very long time it is very much part of ED: “I don’t know whether it was actually mentioned me and no one else’s business” (W27). apart from refer to a dietician, there wasn’t really any practical advice of what we need to do” (P17). Some Current ED symptomatology student midwives felt that module and programme leads For some women disclosure was dependent on their expected knowledge of ED to be gained from self- current mental health status and perceived need to dis- directed learning or ‘learning’ in clinical practice: “I close a history of an ED to a health professional. A few think university often relies on us learning this kind of women who experienced ED prior to becoming pregnant thing in practice that obviously we’ve got so much learn- did not think it necessary to raise this with a healthcare ing in the three years” (P4). professional: “I didn’t think it was relevant as I have Across all groups, most participants felt that the media been OK for a few years now” (W23). Other women re- was their main source of ED knowledge, with personal ported improvements in ED symptoms during preg- and previous clinical experience and training less likely to nancy so similarly did not feel it relevant to disclose: “It be described as a source. Most participants expressed lim- wasn’t affecting me during my pregnancy, it helped” ited understanding of ED beyond food-restriction associ- (W50) and “I felt like I was a lot better when I fell preg- ated with AN and self-induced vomiting associated with nant” (W30). BN, and were not aware of implications for maternal and Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 6 of 10 infant health. Some reported a lack of awareness that ED maternity notes, with concerns about confidentiality if a was classed as a mental health disorder, as one qualified woman’s history of ED was included. Several midwives health visitor explained: “I have a very limited knowledge used domestic violence as an example of the limitations about the, those terms as in Bulimia and Anorexia, I’ve of using women’s handheld notes: “obviously because heard the words being thrown round quite a lot…but what they are handheld notes we’re very careful of what we I know as well is that it’skindoflinked…to mental health write in them” (P3). Communication between services issues” (P30). Consequently, many health professionals particularly within primary care, for instance between lacked evidence-based knowledge on ED which impacted the family doctor (GP), midwives and health visitors, on their confidence in enquiring and identifying ED. One was described by some qualified health visitors as lim- qualified midwife described: “it’s really hard when you’ve, ited, with services increasingly fragmented across acute when people give you information but you don’tknowany- and primary healthcare sectors: “there was one midwife thing about it or there’s nothing much you can do” (P17), in every Sure Start and we were all attached so we would and likewise this feeling was expected to affect disclosure always be able to liaise with that midwife and they by women: “It’s that kind of feeling that, like a bit awk- would liaise with us…now it’s like five midwives, like dif- ward and stuff like you don’t really know what to say and ferent midwives’ every time and they, they don’t build up then it’s not going to help the women open up and discuss that kind of rapport” (P26). Sure Start is a UK parenting anymore with you” (P4). support programme, with centres primarily across Eng- Health professionals related their poor awareness of land with slightly different versions in Wales, Scotland relevant policies, guidance, care management plans and and Northern Ireland, but funding cuts have led to many referral pathways to their lack of relevant training on of these centres closing in recent years [34]. Clinicians ED: “If it’s in the trust policy and guidelines I haven’t felt there were few opportunities to be involved in found it yet because I haven’t sort of come across it or it shared care as part of a multidisciplinary team, resulting hasn’t been emphasised in the training” (P3). Several in limited access to mental health expertise within or be- qualified and student professionals reported not rou- tween services, particularly within health visiting: “if you tinely including ED when asking women about their his- had some supervision around those sorts of issues, any tory of mental health problems: “I never mention those sorts of issue where you’re just feeling like you’re holding words, I don’t think I ever ask a question that you know” something but you haven’t necessarily got the skills” (P11). However, several midwives that had asked women (P26). Furthermore, a few health visitors described poor felt “there’s no point in asking the question if you don’t awareness about ED generally among health profes- know what to say next” (P13) referring to the lack of sionals and not isolated to health visiting: “I do really awareness on care pathways. think that if we had it everybody else in the community Midwives reported that time constraints in antenatal teams would need it too because there would be no point clinics would be likely to impact on their ability to en- in just training us if it then stopped with us” (P27). quire effectively about ED, with opportunities to screen for physical and mental health risk often limited to the Recognition of role initial pregnancy ‘booking’ appointment: “these really big Many clinicians were in favour of enquiring about ED questions you know which can’t just be rushed over” but several considered their confidence and competence (P15). Some health visitors reported they would ask to identify complex mental health problems was limited, about women’s mental health at a ‘new baby’ visit which and their role should be more advisory and supportive. was usually allocated more time than other routine clinic This was illustrated by one student midwife who de- appointments, but there was less focus on this being the scribed: “we tell people what not to eat but not how do main opportunity as “when you see them for the first you eat” (P3). Some qualified midwives felt that the pri- visit…you know the chances are you won’t see that person mary focus in antenatal care was physical wellbeing of again…I’ve got someone who comes to clinic…the health the woman and the fetus rather than the woman’s men- visitor probably never saw her again anyway, whereas tal health: “We would be just making sure that the baby now it would be much more appropriate for me to say to was growing adequately… and then leaving the woman her” (P31). well alone in a way just focusing on the wellbeing of the In all groups, poor sharing of information about a baby” (P11). The focus on the infant after the birth was woman’s physical and mental health was reported to be similarly expressed by some of the qualified health problematic. Qualified and student midwives reported visitors. A few student midwives considered whether limited means of relaying sensitive information or raising women’s perceptions of their clinical roles could support concerns about a woman’s mental health between col- or hinder a discussion about ED as “a midwife…usually leagues. A woman’s pregnancy and medical history was it’s for normal pregnancies, normality, and also is a fig- expected to be documented in the woman’s handheld ure that only she’s for the women and babies and the Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 7 of 10 doctors maybe they seem, or the mental health services mental health literature [27, 28, 35]. The term stigma in- don’t sound probably very nice…maybe it’s easier because volves perceived and experienced stereotyping, prejudice they know that this, the midwife is gonna follow them and discrimination to the detriment of the targeted through the pregnancy” (P2), whereas “the health visitors group [36]. The stigma of mental health is widely recog- kind of some were viewed for the baby and kind of for the nised, but it can be greater for ED as sufferers are per- child’s sake not someone to support the mum” (P4). ceived as more responsible and in control of their ED behaviours [37, 38]. The stigmatising attitudes towards Personal attitudes BED specifically are comparable to attitudes towards The majority felt that health professionals needed to be obesity and overweight status [39]. Weight stigma is well empathic and positive so that women felt comfortable to recognised and reinforced by some of the more perva- raise and discuss their mental health problems: “there is sive anti-obesity campaigns [39]. Given the association no room for negativity in midwifery” (P12). However, one between BED and obesity [40], the stigma women with health visitor did express that she would feel uncomfort- BED experience may be compounded by their weight able to enquire about ED with women who were over- status. Stigmatising attitudes can contribute to feelings weight compared to women who were underweight. One of shame and guilt, which cause an individual to feel midwife discussed the need to recognise the health pro- personal responsibility for their behaviours. As a conse- fessional as an individual: “we make assumptions that we quence, an individual may want to hide their disorder all will deliver that health promotion message when ac- [41], avoid disclosure and show reluctance to seek help tually attitudes and beliefs are integral to who we are, for their ED [27–29]. influence how we ask the question” (P22). In the UK, several campaigns have been launched to raise public awareness and reduce stigma about mental Stigma and taboo health, such as the ‘Time to Change’ campaign [42], and Health professionals in all groups discussed the stigma several initiatives have been launched to address peri- of ED, with some referring to it as a ‘taboo’ subject for natal mental health awareness specifically, such as the women and clinicians, with less experienced midwives ‘Better Births’ initiative [43]. Similar anti-stigma pro- and health visitors describing greater anxiety about ask- grammes exist in other countries, such as ‘Beyond Blue’ ing women. As one student midwife said: “it does feel in Australia [44], ‘Mental Health Commission of Canada’ kind of sometimes like it’s one of those taboo questions a [45], and ‘Bring Change 2 Mind’ in the US [46], and bit like domestic violence…but you kind of like skirt over these, along with other campaigns, have formed a global like ‘you haven’t ever had any eating disorders, have you? alliance to reduce mental health stigma [47]. However, No right moving on” (P4). One qualified midwife ex- ED continue to be largely neglected in these mental plained: “one needs to be sensitive about these things, health awareness campaigns. BED is also not considered mental health issues equals social services take away and neither is the broader issue of weight stigma within baby” (P15). the anti-obesity and healthy eating campaigns and clin- ical guidance [48–50]. The campaigns and clinical guid- Discussion ance [48–50] aimed at addressing the rising prevalence This is the first research to specifically explore the per- of obesity focus on changing nutrition but not on eating spectives of women and health professionals on the disorder behaviours that might affect nutrition. Consid- barriers to identifying ED during and after pregnancy. ering the high level of comorbidity [40], the identifica- Our main findings were that perceived stigma had a tion of ED perinatally may subsequently support obesity major impact on women’s disclosure of their illness, and prevention in pregnancy and postnatally. Initiatives are health professionals had low confidence in identifying needed to specifically target and address the broad range ED as they lacked evidence-based knowledge and train- of ED to reduce stigma, prevent discrimination and raise ing. The discussion will mainly focus on these outcomes awareness. Only by raising the profile of ED and redu- as they were the most prominent, and have direct impli- cing stigma will disclosure and open discussion with cations to support effective identification of ED during health professionals be encouraged among women dur- and after pregnancy. ing and after pregnancy who suffer these mental health Consistent with general and pregnancy ED research, disorders. women were often reluctant to disclose their ED to a Health professionals considered an important barrier health professional [25, 29]. Stigma was a key barrier re- to identifying ED was their lack of evidence-based know- ported by the women in this research, and health profes- ledge and training, which subsequently impacted on sionals similarly felt it hindered discussion and enquiry their confidence. This finding was not unexpected as ED about ED. Stigma is consistently implicated as a barrier are not currently specified in the core clinical competen- to disclosure and treatment-seeking in the ED and wider cies required as part of pre-registration training of Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 8 of 10 midwives and health visitors in the UK [51, 52]. This re- There are several limitations to the research to be flects poor integration of available guidance in to pre and taken in to account when considering the implications post-registration training [24]. Future curriculum revisions of the findings. Convenience sampling was necessary for need to educate about the complexity and range of ED logistical reasons however, it limits the representative- and ED behaviours, and include the changes in symptoms ness of the sample and generalisability of the findings. that may be experienced during and after pregnancy [3, There may have been recall bias as most women were 6–9]. Research is needed to explore facilitators to disclos- reflecting on past experiences of antenatal care. The sin- ure to identify acceptable means of enquiry and manage- gle eligibility question may have been ambiguous in the ment that are sensitive and responsive to the needs of absence of a clinical diagnosis and did not distinguish women, and findings need to be incorporated in to future between past or current ED. However this type of self- training. Training also needs to address individual atti- report indicator was used primarily for practical reasons, tudes about ED given the expectation for health profes- further it has been validated in an antenatal sample [62] sionals to deliver care in a consistent manner. and no ED screening measures have been validated in Other system level barriers to identifying ED in preg- pregnancy. Future research could focus on women who nancy and postnatally were identified, specifically poor have been clinically diagnosed with ED. continuity of care and poor communication between health professionals and women, and between health Conclusions professionals. Women and health professionals described There are several important barriers to the identification the lack of opportunity and time within routine ante- of ED in pregnancy and the postnatal period. Stigma had a natal and postnatal care contacts to discuss ED in a major impact on women’s disclosure of their illness, whilst comfortable way to encourage disclosure, with midwives health professionals had poor confidence in identifying advocating the potential benefit of a ‘case loading’ model ED as they lacked evidence-based knowledge and training. of midwifery care. This model of midwifery care is con- The need to identify perinatal mental health problems has sidered to promote better continuity of care in preg- been increasingly recognised, however ED continue to be nancy and is advocated in UK policy and guidance [53, neglected and it is important to raise awareness with 54] and other countries with similar healthcare systems health professionals. Similarly, clinical guidance aimed at such as Australia [55]. Case loading models of midwifery responding to the rising prevalence of obesity focus on care have been associated with better maternal and in- changing nutrition but not on ED behaviours that might fant outcomes, patient satisfaction, and cost effectiveness affect nutrition. Improving ED education and training for in comparison to other models of maternity care [56– health professionals may contribute to reducing stigma 58], yet provision remains variable [59, 60]. Poor com- and increase confidence in identifying ED. The barriers munication between health professionals was similarly identified in this research need to be addressed if recogni- an important barrier as methods of relaying concern tion and response to women with ED during the perinatal about women were complicated by the need to balance period is to improve. communication of crucial information with respecting the sensitive and confidential nature of disclosure. The Additional file issue of communication of risk between acute and pri- mary care services is increasingly affected by fragmented Additional file 1: Study 1: Mixed-measures survey. (DOCX 13 kb) and poorly integrated maternity services, particularly in Additional file 2: Study 2: Focus group topic guide. (DOCX 16 kb) primary care settings with services central to coordinating Additional file 3: Study 1: Themes with illustrative quotations. (DOCX 14 kb) healthcare [61]. Addressing these system level barriers Additional file 4: Study 2: Themes with illustrative quotations. (DOCX 15 kb) could promote an environment conducive to open discus- sion and support the role of the health professionals in the Abbreviations identification of ED in the perinatal period. AN: Anorexia Nervosa; BED: Binge Eating Disorder; BN: Bulimia Nervosa; ED: Eating Disorders; NHS: National Health Service; NICE: National Institute for Strengths and limitations Health and Care Excellence Strengths of this research include the exploration of expe- riences from both women and health professionals, with Acknowledgements We are extremely grateful to the women, students, staff, NHS Trusts and consistency in the findings between the two groups. Re- Universities that have contributed to this research. We would like to thank search findings are likely to be relevant for women who NetMums for their support in administering the survey. We would like to have ED regardless of place of birth, with issues for health thank Dr. Kylee Trevillion for contributions to the data analysis, and Jennifer Elglumati for assistance with data collection. Finally, we are grateful for the professional training likely to be relevant in settings where support received from the Open Access Funding Team at the University women can access care from midwives and health visitors College London Library Services towards publishing this manuscript as an or an equivalent health professional. open access publication. Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 9 of 10 Funding 3. Easter A, Bye A, Taborelli E, Corfield F, Schmidt U, Treasure J, et al. Recognising DB is supported by the National Institute for Health Research (NIHR) the symptoms: how common are eating disorders in pregnancy? Eur Eat Collaboration for Leadership in Applied Health Research and Care South Disord Rev. 2013;21:340–4. https://doi.org/10.1002/erv.2229. London at King’s College Hospital NHS Foundation Trust (NIHR, CLAHRC- 4. Pettersson CB, Zandian M, Clinton D. Eating disorder symptoms pre- and 2013-10022). AE is funded through a King’s Improvement Science Fellowship postpartum. Arch Womens Ment Health. 2016; https://doi.org/10.1007/ award. King’s Improvement Science is part of the NIHR CLAHRC South s00737-016-0619-3. London and comprises a specialist team of improvement scientists and se- 5. Turton P, Hughes P, Bolton H, Sedgwick P. Incidence and demographic nior researchers based at King’s College London. Its work is funded by King’s correlates of eating disorder symptoms in a pregnant population. Int J Eat Health Partners (Guy’s and St Thomas’ NHS Foundation Trust, King’s College Disord. 1999;26:448–52. Hospital NHS Foundation Trust, King’s College London and South London 6. Blais MA, Becker AE, Burwell RA, Flores AT, Nussbaum KM, Greenwood DN, and Maudsley NHS Foundation Trust), Guy’s and St Thomas’ Charity, the et al. Pregnancy: outcome and impact on symptomatology in a cohort of Maudsley Charity and the Health Foundation. NM was funded by a National eating-disordered women. Int J Eat Disord. 2000;27:140–9. Institute of Health Research (NIHR) clinician scientist award (DHCS/08/08/ 7. Crow SJ, Keel PK, Thuras P, Mitchell JE. Bulimia symptoms and other risk 012). The views expressed in this publication are those of the authors and behaviors during pregnancy in women with bulimia nervosa. Int J Eat not necessarily those of the NHS, the NIHR or the Department of Health. Disord. 2004;36:220–3. https://doi.org/10.1002/eat.20031. 8. Micali N, Treasure J, Simonoff E. Eating disorders symptoms in pregnancy: a Availability of data and materials longitudinal study of women with recent and past eating disorders and The datasets generated and analysed during the current research are not obesity. J Psychosom Res. 2007;63:297–303. https://doi.org/10.1016/j. publicly available as individual privacy could be compromised but are jpsychores.2007.05.003. available from the corresponding author on reasonable request. 9. Crow SJ, Agras WS, Crosby R, Halmi K, Mitchell JE. Eating disorder symptoms in pregnancy: a prospective study. Int J Eat Disord. 2008;41:277–9. https:// doi.org/10.1002/eat.20496. Authors’ contributions 10. Easter A, Solmi F, Bye A, Taborelli E, Corfield F, Schmidt U, et al. Antenatal All authors contributed significantly to this work. AB and NM conceived and and postnatal psychopathology among women with current and past designed the studies, with input from JS, DB and AE. AB carried out the data eating disorders: longitudinal patterns. Eur Eat Disord Rev. 2015;23:19–27. collection. AB and MKM analysed the data. All authors contributed to https://doi.org/10.1002/erv.2328. interpreting the findings. AB drafted the manuscript, and all authors read 11. Micali N, Simonoff E, Treasure J. Pregnancy and post-partum depression and and approved the final manuscript. anxiety in a longitudinal general population cohort: the effect of eating disorders and past depression. J Affect Disord. 2011;131:150–7. https://doi. Ethics approval and consent to participate org/10.1016/j.jad.2010.09.034. Ethical approval for the research was granted by the University College 12. Bulik CM, Von Holle A, Siega-Riz AM, Torgersen L, Lie KK, Hamer RM, et al. London’s Research Ethics Committee (Ref. 3735/001 and 3735/002) and the Birth outcomes in women with eating disorders in the Norwegian mother Joint Research and Development Office for Great Ormond Street Hospital for and child cohort study (MoBa). Int J Eat Disord. 2009;42:9–18. https://doi. Children NHS Foundation Trust & The UCL Institute of Child Health (Ref. org/10.1002/eat.20578. 11BS33). Women’s consent to take part in the survey was implied by virtue 13. Easter A, Treasure J, Micali N. 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Standards of proficiency for specialist community public health nurses. London: Nursing & Midwifery Council; 2004. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Pregnancy and Childbirth Springer Journals

Barriers to identifying eating disorders in pregnancy and in the postnatal period: a qualitative approach

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Springer Journals
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Copyright © 2018 by The Author(s).
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Medicine & Public Health; Reproductive Medicine; Maternal and Child Health; Gynecology
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Abstract

Background: Eating Disorders (ED) are mental health disorders that typically effect women of childbearing age and are associated with adverse maternal and infant outcomes. UK healthcare guidance recommends routine enquiry for current and past mental illness in antenatal and postnatal care for all women, and that pregnant women with a known ED are offered enhanced monitoring and support. Midwives and health visitors are ideally placed to identify and support women with ED as they are often the primary point of contact during the antenatal and postnatal periods. However, research on the barriers to identifying ED in the perinatal period is limited. This study aimed 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 National Health Service. Methods: Two studies were undertaken: mixed-measures survey of pregnant and postnatal women with current or past ED; focus groups with student and qualified midwives and health visitors. Results: Five themes emerged on the barriers to disclosure in pregnancy as perceived by women: stigma, lack of opportunity, preference for self-management, current ED symptomatology and illness awareness. Four themes were identified on the barriers to identification of ED in pregnancy and in the postnatal period as perceived by health professionals: system constraints, recognition of role, personal attitudes, and stigma and taboo. Conclusions: Several barriers to the identification of ED during and after pregnancy were described, the main factors were stigma and poor professional training. Perinatal mental health is becoming increasingly prioritised within national policy initiatives; however, ED continue to be neglected and increased awareness is needed. Similarly, clinical guidance aimed at responding to the rising prevalence of obesity focus on changing nutrition but not on assessing for the presence of ED behaviours that might be affecting nutrition. Improving education and training for health professionals may contribute to reducing stigma and increase confidence in identifying ED. The barriers identified in this research need to be addressed if recognition and response to women with ED during the perinatal period is to improve. Keywords: Eating Disorders, Pregnancy, Barriers, Disclosure, Identification, Qualitative research Background Nervosa (BN) and Binge-Eating Disorder (BED) [1]. ED Eating Disorders (ED) are a group of mental health dis- typically affect women of reproductive age [2] and may orders characterised by severe disturbances in eating be- affect between 5.1-7.5% of women during pregnancy, if haviour that significantly impair health and psychosocial subthreshold disorders are included [3–5]. Women with functioning, including Anorexia Nervosa (AN), Bulimia ED tend to experience a decrease in ED symptoms dur- ing pregnancy [6–9]. However, there is evidence that symptoms persist [7, 8] and of postnatal relapse [6, 8, 9]. * Correspondence: a.bye@ucl.ac.uk Furthermore, depression and anxiety symptoms are Population, Policy and Practice, UCL Great Ormond Street Institute of Child Health, 30 Guilford Street, WC1N 1EH, London, UK common during pregnancy and postnatally for women Centre for Implementation Science, Health Service and Population Research, with current and past ED [10, 11]. Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 2 of 10 ED have been associated with various adverse preg- Objectives nancy outcomes, for instance women with AN have To understand the barriers to disclosure and identifica- higher risk of infertility, unplanned pregnancies, miscar- tion of ED in pregnancy and postnatally as perceived by riage, prematurity and low birth weight babies while women with past or current ED, and midwives and women with BED have increased risk of higher birth health visitors working in the UK NHS. weight babies [12–17]. There is growing evidence of the postnatal impact of maternal ED, such as difficulties Methods with infant feeding [18–20], and behavioural and emo- Two studies were undertaken: tional problems in the infant [21–23]. Given the evidence of adverse outcomes for women Study 1 and their infants, early identification of ED and appro- Design and setting priate antenatal and postnatal care are highly import- A mixed-measures survey of pregnant and postnatal ant. In the UK, National Health Service (NHS) women with current or past ED was conducted over a maternitycare is informedbya suiteof guidance from seven-month period. Women were recruited via a national the National Institute for Health and Care Excellence parenting website, Netmums, which is a UK-based online (NICE). NICE antenatal and postnatal mental health parenting organisation with over 1.7 million members. guidance [24] recommends routine enquiry about Ethical approval was granted by the University College current and past severe mental illness with all women, London’s Research Ethics Committee (Ref. 3735/002). and women with ED should be offered enhanced sup- port and monitoring, and referred to specialist care if Recruitment and procedure needed. Midwives and health visitors are ideally placed The study employed convenience sampling by inviting to identify and support women with ED as they are the women to voluntarily take part in an online survey via a primary point of contact delivering routine care for all study advertisement on the organisation website. Before women from pregnancy until the child is aged five. In a commencing the survey, women were asked to read the universal healthcare system such as the NHS where information about the study displayed on the website. these regular routine appointments are provided, guide- To be eligible, women had to answer yes to “Do you lines to support effective identification and manage- have, or have you had an eating disorder?”, and respond ment of women with ED should be implemented to to “How many children do you have?” with either the reduce risk of poor pregnancy and birth outcomes, number of children or that they are currently pregnant. howeverevidenceon uptakeand useof guidance is For women who were eligible and willing to take part, limited. consent to participate was implied by virtue of survey To our knowledge, no previous studies have specific- completion. The survey was developed specifically for ally investigated the barriers to identifying ED in the this study, and questions of interest were a combination perinatal period. Evidence suggests that women with of seven Likert-type scale questions and an open-ended ED are often reluctant to disclose their ED to a health question (see Additional file 1). professional [25] and are unlikely to seek treatment [26], which may be due to feelings of stigma and shame Participants [27, 28]. One UK-based qualitative study investigating A total of 101 women completed the mixed-measures sur- women’s views of antenatal care found that women vey, the majority of whom were not currently pregnant were reluctant to disclose their ED because they felt and already had children and had experienced an ED in health professionals lacked ED knowledge and sensitiv- the past or currently (n = 92; see Table 1). The sample ity in dealing with the disorder [29]. A few studies in consisted of women from across the UK, with a range of the US have found poor routine enquiry and knowledge age and educational attainment reflected. about ED behaviours and symptoms among clinicians, including obstetricians [30–32]. Analysis Subsequently, women with ED may go undetected Data were analysed using the thematic analysis approach during pregnancy and postnatally, with potential impli- described by Braun and Clark [33]. This approach is an cations for adverse maternal and infant health outcomes inductive and iterative process involving six phases of if disorders are not managed appropriately. An in-depth analysis: familiarisation with data, generation of initial understanding of barriers to the identification of ED codes, searching for themes among codes, reviewing during and after pregnancy which reflects the perspec- themes, defining and naming themes, and producing the tives of women and health professionals is needed to as- final report. Data were independently coded by two re- sess and inform practice, including implementation of searchers (AB and KT), both of whom were trained in relevant guidelines in to practice. qualitative research methods and analysis. The rating- Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 3 of 10 Table 1 Study 1: Sample characteristics Table 1 Study 1: Sample characteristics (Continued) Characteristics N (%) N = 101 Characteristics N (%) N = 101 Age Binge eating 21 (21%) ≤ 24 21 (21%) Calorie restriction 27 (27%) 25-35 55 (55%) Excessive exercise 12 (12%) ≧36 24 (24%) Low weight 15 (15%) Missing 1 Health professional aware of eating disorder Parity Yes 22 (22%) Currently pregnant 9 (9%) No 62 (61%) 1 child 39 (39%) Unsure 16 (16%) 2 children 37 (37%) Missing 1 ≧3 children 16 (16%) Informed health professional about eating disorder Missing – Yes 26 (26%) Location No 72 (71%) England Missing 3 London 16 (16%) Midlands and East of England 18 (18%) pair familiarised themselves with the data and independ- North England 26 (26%) ently coded the complete data set to ensure reliability and South England 24 (24%) thoroughness, ensuring full consideration could be given Wales 6 (6%) to patterns within the data. The pair discussed their codes together, with an 89% agreement being achieved by the Scotland 5 (5%) rating-pair. At this stage, codes with similar information Northern Ireland 3 (3%) were grouped, discrepancies discussed, and agreement Missing 3 sought before amendments were made and emerging Education themes sought. The process was iterative throughout, with GCSE or equivalent 27 (27%) continual reference to the original data to validate and re- A level or equivalent 28 (28%) fine emerging themes. The themes were then clustered into subordinate themes, and finally superordinate Degree or above 44 (44%) themes. The research team contributed to the refining, Missing 2 naming and interpretation of the themes. Quotes that Type of eating disorder were illustrative of the themes and subthemes are pre- Anorexia Nervosa 34 (34%) sented in the results and additional files. Bulimia Nervosa 16 (16%) Binge Eating Disorder 24 (24%) Study 2 Design and setting Eating Disorder Not Otherwise Specified 25 (25%) Focus groups with student and qualified midwives and Missing 2 health visitors were conducted over a seven-month Any eating disorder symptoms experienced during pregnancy period at participating universities and NHS hospital No 36 (36%) and community services in the South of England. Ethical Yes 64 (63%) approval was granted by the University College London’s Missing 1 Research Ethics Committee (Ref. 3735/001) and the Joint Research and Development Office for Great Ormond Eating disorder symptoms experienced during pregnancy Street Hospital for Children NHS Foundation Trust & Purging 12 (12%) The UCL Institute of Child Health (Ref. 11BS33). Binge eating 29 (29%) Calorie restriction 31 (31%) Recruitment and procedure Excessive exercise 14 (14%) A convenience sampling strategy was employed to recruit Low weight 17 (17%) participants to the focus groups. Student midwives were recruited from across three universities, and student Eating disorder symptoms that improved during pregnancy health visitors from one university. Qualified midwives Purging 16 (16%) were recruited from two hospital and community services, Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 4 of 10 and qualified health visitors from one community service. Table 2 Study 2: Sample characteristics Five focus groups were conducted, with one group per Characteristics N (%) N =33 professional group, except for qualified midwives who re- Age quired two separate groups to be conducted as staff were ≤ 24 4 (12%) unable to travel between the two locations due to time 25-35 11 (32%) and resource constraints. Participants provided written in- ≧36 12 (35%) formed consent prior to taking part in the focus group. Missing 7 The focus groups were facilitated by AB. The focus group topic guide was developed specifically Gender for this study and refined by the research team and other Female 32 (97%) experts, including researchers with qualitative research Male 1 (3%) experience and training and clinical specialists in ED, Ethnicity midwifery and health visiting. The guide facilitated an White 24 (73%) informal discussion in each focus group on attitudes, Black 5 (15%) knowledge, and clinical practice on identifying ED in pregnancy and in the postnatal period, focusing on the Asian Indian 1 (3%) role of midwives and health visitors (see Additional file 2). Mixed ethnicity 1 (3%) Health professionals were not asked directly if they had Missing 2 a personal experience of ED. Professional category Student Participants Midwife 5 (15%) Thirty-three health professionals took part in the focus groups, the majority of whom were qualified health pro- Health Visitor 5 (15%) fessionals (see Table 2). The sample was predominately Qualified white, female and over twenty-five years of age. The ma- Midwife 14 (42%) jority had trained in the UK and as part of that training Health Visitor 9 (27%) had been educated in perinatal mental health, however Training for current post in the UK only a small proportion had received training specifically Yes 28 (82%) in ED (n = 10; 29%). No 3 (9%) Analysis Missing 3 The focus group discussions were recorded and tran- Previous nurse training scribed verbatim with identifying material removed. Data Yes 19 (56%) were analysed following the same procedure as detailed No 12 (35%) for Study 1 using a thematic analysis approach [33]to Missing 2 refine the emerging themes. The data were independ- ently coded by two trained researchers (AB and MKM) Received training in perinatal mental health and a percentage agreement of 79% was achieved by the Yes 24 (71%) rating-pair, with discrepancies resolved in the same man- No 5 (15%) ner as detailed for Study 1. Missing 5 Received training specifically in ED Results Yes 10 (29%) Study 1 Women reported experiencing some improvements in ED No 21 (62%) symptoms during pregnancy, however over half of the Missing 3 sample reported experiencing any ED symptoms during pregnancy (n = 64; 63%), most common was calorie re- striction and binge eating. Only a quarter (n = 26; 26%) of women: stigma, lack of opportunity, preference for self- the sample reported disclosing their ED to a health profes- management, current ED symptomatology and illness sional involved in their antenatal care, and of the seventy- awareness (see Additional file 3). two (71%) women who did not disclose, seventy-one (70%) explained their reasons for not doing so (see Stigma Table 1). The findings generated five themes on the bar- Stigma of ED was an important theme for women’snon- riers to disclosure of ED in pregnancy as perceived by disclosure to a health professional. Many women reported Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 5 of 10 that they felt shameful and embarrassed and feared judge- Illness awareness ment. Some women described feeling judged by health For several women, disclosure of an ED was dependent professionals based on their physical appearance, as illus- on their awareness of ED and acknowledging that their trated by one woman who stated: “I was overweight ac- symptoms were that of an ED. This was particularly not- cording to my BMI. I didn’t think they would believe me to able in women with BED as retrospectively some consid- tell them I had an actual problem. I was patronised by ered that they had dismissed their binge eating behaviours more than one healthcare professional who tried to edu- as general over eating: cate me on nutrition. I got the impression they thought I “Binge eating doesn’t seem like that big of an issue and was just lazy and ate junk food all of the time when this I’ve never seen it as an eating disorder before” W4. wasn’t the case. I felt they were too judgemental to ap- “I have only really just recognised that I have an issue proach” (W42). A few women expressed concern that a & at the time I was pregnant did not realise. I just disclosure would lead to unwanted referrals to social ser- thought I was a greedy person” W34. vices and other services: “I would have been to worried to discuss with my midwife etc. for fear of being reprimanded Study 2 for it (i.e. referred to social services” (W49). Four main themes emerged on the barriers to identi- fication of ED in the perinatal period as perceived by health professionals: system constraints, recognition of Lack of opportunity role, personal attitudes, and stigma and taboo (see Several women expressed a lack of opportunity to dis- Additional file 4). close and discuss an ED with a health professional. It was felt there was limited and insufficient enquiry by System constraints health professionals as “they didn’t ask and it wasn’t System constraints and associated sub-themes were the raised as a concern” (W67). One woman expressed diffi- dominant theme affecting the identification of ED culties in establishing a rapport with a midwife that may among health professionals. All the professionals re- have facilitated a disclosure: “I didn’t have the same mid- ported receiving minimal, if any training on ED as part wife for long enough to speak to them, it was rather of their pre or post-registration clinical education, as stressful and upsetting” (W21). one participant described: “I know what an eating disorder is but I’ve not come across it through my health visitor training” (P7). Some health professionals felt Preference for self-management knowledge had to be inferred from other taught topics Some women reported not disclosing their ED to a as ED were not specifically addressed, as illustrated by health professional as they did not need or want special- one qualified midwife involved in midwifery education: ist care and preferred to self-manage their disorder: “I “it wouldn’t be a module…it would be linked into mental don’t like to talk about it and think I can manage on my ill health or BMI” (P22). Several qualified and student own” (W26), and “I just wanted to deal with it myself” participants reported receiving training, but considered (W36). In some cases, this feeling appeared to relate to that this was a general introduction to ED which was how long their ED had been undetected for: “I don’t not specific to women during or after pregnancy and did really like to talk about it I have had some sort of disor- not clarify their clinical role in identifying or managing dered eating for a very long time it is very much part of ED: “I don’t know whether it was actually mentioned me and no one else’s business” (W27). apart from refer to a dietician, there wasn’t really any practical advice of what we need to do” (P17). Some Current ED symptomatology student midwives felt that module and programme leads For some women disclosure was dependent on their expected knowledge of ED to be gained from self- current mental health status and perceived need to dis- directed learning or ‘learning’ in clinical practice: “I close a history of an ED to a health professional. A few think university often relies on us learning this kind of women who experienced ED prior to becoming pregnant thing in practice that obviously we’ve got so much learn- did not think it necessary to raise this with a healthcare ing in the three years” (P4). professional: “I didn’t think it was relevant as I have Across all groups, most participants felt that the media been OK for a few years now” (W23). Other women re- was their main source of ED knowledge, with personal ported improvements in ED symptoms during preg- and previous clinical experience and training less likely to nancy so similarly did not feel it relevant to disclose: “It be described as a source. Most participants expressed lim- wasn’t affecting me during my pregnancy, it helped” ited understanding of ED beyond food-restriction associ- (W50) and “I felt like I was a lot better when I fell preg- ated with AN and self-induced vomiting associated with nant” (W30). BN, and were not aware of implications for maternal and Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 6 of 10 infant health. Some reported a lack of awareness that ED maternity notes, with concerns about confidentiality if a was classed as a mental health disorder, as one qualified woman’s history of ED was included. Several midwives health visitor explained: “I have a very limited knowledge used domestic violence as an example of the limitations about the, those terms as in Bulimia and Anorexia, I’ve of using women’s handheld notes: “obviously because heard the words being thrown round quite a lot…but what they are handheld notes we’re very careful of what we I know as well is that it’skindoflinked…to mental health write in them” (P3). Communication between services issues” (P30). Consequently, many health professionals particularly within primary care, for instance between lacked evidence-based knowledge on ED which impacted the family doctor (GP), midwives and health visitors, on their confidence in enquiring and identifying ED. One was described by some qualified health visitors as lim- qualified midwife described: “it’s really hard when you’ve, ited, with services increasingly fragmented across acute when people give you information but you don’tknowany- and primary healthcare sectors: “there was one midwife thing about it or there’s nothing much you can do” (P17), in every Sure Start and we were all attached so we would and likewise this feeling was expected to affect disclosure always be able to liaise with that midwife and they by women: “It’s that kind of feeling that, like a bit awk- would liaise with us…now it’s like five midwives, like dif- ward and stuff like you don’t really know what to say and ferent midwives’ every time and they, they don’t build up then it’s not going to help the women open up and discuss that kind of rapport” (P26). Sure Start is a UK parenting anymore with you” (P4). support programme, with centres primarily across Eng- Health professionals related their poor awareness of land with slightly different versions in Wales, Scotland relevant policies, guidance, care management plans and and Northern Ireland, but funding cuts have led to many referral pathways to their lack of relevant training on of these centres closing in recent years [34]. Clinicians ED: “If it’s in the trust policy and guidelines I haven’t felt there were few opportunities to be involved in found it yet because I haven’t sort of come across it or it shared care as part of a multidisciplinary team, resulting hasn’t been emphasised in the training” (P3). Several in limited access to mental health expertise within or be- qualified and student professionals reported not rou- tween services, particularly within health visiting: “if you tinely including ED when asking women about their his- had some supervision around those sorts of issues, any tory of mental health problems: “I never mention those sorts of issue where you’re just feeling like you’re holding words, I don’t think I ever ask a question that you know” something but you haven’t necessarily got the skills” (P11). However, several midwives that had asked women (P26). Furthermore, a few health visitors described poor felt “there’s no point in asking the question if you don’t awareness about ED generally among health profes- know what to say next” (P13) referring to the lack of sionals and not isolated to health visiting: “I do really awareness on care pathways. think that if we had it everybody else in the community Midwives reported that time constraints in antenatal teams would need it too because there would be no point clinics would be likely to impact on their ability to en- in just training us if it then stopped with us” (P27). quire effectively about ED, with opportunities to screen for physical and mental health risk often limited to the Recognition of role initial pregnancy ‘booking’ appointment: “these really big Many clinicians were in favour of enquiring about ED questions you know which can’t just be rushed over” but several considered their confidence and competence (P15). Some health visitors reported they would ask to identify complex mental health problems was limited, about women’s mental health at a ‘new baby’ visit which and their role should be more advisory and supportive. was usually allocated more time than other routine clinic This was illustrated by one student midwife who de- appointments, but there was less focus on this being the scribed: “we tell people what not to eat but not how do main opportunity as “when you see them for the first you eat” (P3). Some qualified midwives felt that the pri- visit…you know the chances are you won’t see that person mary focus in antenatal care was physical wellbeing of again…I’ve got someone who comes to clinic…the health the woman and the fetus rather than the woman’s men- visitor probably never saw her again anyway, whereas tal health: “We would be just making sure that the baby now it would be much more appropriate for me to say to was growing adequately… and then leaving the woman her” (P31). well alone in a way just focusing on the wellbeing of the In all groups, poor sharing of information about a baby” (P11). The focus on the infant after the birth was woman’s physical and mental health was reported to be similarly expressed by some of the qualified health problematic. Qualified and student midwives reported visitors. A few student midwives considered whether limited means of relaying sensitive information or raising women’s perceptions of their clinical roles could support concerns about a woman’s mental health between col- or hinder a discussion about ED as “a midwife…usually leagues. A woman’s pregnancy and medical history was it’s for normal pregnancies, normality, and also is a fig- expected to be documented in the woman’s handheld ure that only she’s for the women and babies and the Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 7 of 10 doctors maybe they seem, or the mental health services mental health literature [27, 28, 35]. The term stigma in- don’t sound probably very nice…maybe it’s easier because volves perceived and experienced stereotyping, prejudice they know that this, the midwife is gonna follow them and discrimination to the detriment of the targeted through the pregnancy” (P2), whereas “the health visitors group [36]. The stigma of mental health is widely recog- kind of some were viewed for the baby and kind of for the nised, but it can be greater for ED as sufferers are per- child’s sake not someone to support the mum” (P4). ceived as more responsible and in control of their ED behaviours [37, 38]. The stigmatising attitudes towards Personal attitudes BED specifically are comparable to attitudes towards The majority felt that health professionals needed to be obesity and overweight status [39]. Weight stigma is well empathic and positive so that women felt comfortable to recognised and reinforced by some of the more perva- raise and discuss their mental health problems: “there is sive anti-obesity campaigns [39]. Given the association no room for negativity in midwifery” (P12). However, one between BED and obesity [40], the stigma women with health visitor did express that she would feel uncomfort- BED experience may be compounded by their weight able to enquire about ED with women who were over- status. Stigmatising attitudes can contribute to feelings weight compared to women who were underweight. One of shame and guilt, which cause an individual to feel midwife discussed the need to recognise the health pro- personal responsibility for their behaviours. As a conse- fessional as an individual: “we make assumptions that we quence, an individual may want to hide their disorder all will deliver that health promotion message when ac- [41], avoid disclosure and show reluctance to seek help tually attitudes and beliefs are integral to who we are, for their ED [27–29]. influence how we ask the question” (P22). In the UK, several campaigns have been launched to raise public awareness and reduce stigma about mental Stigma and taboo health, such as the ‘Time to Change’ campaign [42], and Health professionals in all groups discussed the stigma several initiatives have been launched to address peri- of ED, with some referring to it as a ‘taboo’ subject for natal mental health awareness specifically, such as the women and clinicians, with less experienced midwives ‘Better Births’ initiative [43]. Similar anti-stigma pro- and health visitors describing greater anxiety about ask- grammes exist in other countries, such as ‘Beyond Blue’ ing women. As one student midwife said: “it does feel in Australia [44], ‘Mental Health Commission of Canada’ kind of sometimes like it’s one of those taboo questions a [45], and ‘Bring Change 2 Mind’ in the US [46], and bit like domestic violence…but you kind of like skirt over these, along with other campaigns, have formed a global like ‘you haven’t ever had any eating disorders, have you? alliance to reduce mental health stigma [47]. However, No right moving on” (P4). One qualified midwife ex- ED continue to be largely neglected in these mental plained: “one needs to be sensitive about these things, health awareness campaigns. BED is also not considered mental health issues equals social services take away and neither is the broader issue of weight stigma within baby” (P15). the anti-obesity and healthy eating campaigns and clin- ical guidance [48–50]. The campaigns and clinical guid- Discussion ance [48–50] aimed at addressing the rising prevalence This is the first research to specifically explore the per- of obesity focus on changing nutrition but not on eating spectives of women and health professionals on the disorder behaviours that might affect nutrition. Consid- barriers to identifying ED during and after pregnancy. ering the high level of comorbidity [40], the identifica- Our main findings were that perceived stigma had a tion of ED perinatally may subsequently support obesity major impact on women’s disclosure of their illness, and prevention in pregnancy and postnatally. Initiatives are health professionals had low confidence in identifying needed to specifically target and address the broad range ED as they lacked evidence-based knowledge and train- of ED to reduce stigma, prevent discrimination and raise ing. The discussion will mainly focus on these outcomes awareness. Only by raising the profile of ED and redu- as they were the most prominent, and have direct impli- cing stigma will disclosure and open discussion with cations to support effective identification of ED during health professionals be encouraged among women dur- and after pregnancy. ing and after pregnancy who suffer these mental health Consistent with general and pregnancy ED research, disorders. women were often reluctant to disclose their ED to a Health professionals considered an important barrier health professional [25, 29]. Stigma was a key barrier re- to identifying ED was their lack of evidence-based know- ported by the women in this research, and health profes- ledge and training, which subsequently impacted on sionals similarly felt it hindered discussion and enquiry their confidence. This finding was not unexpected as ED about ED. Stigma is consistently implicated as a barrier are not currently specified in the core clinical competen- to disclosure and treatment-seeking in the ED and wider cies required as part of pre-registration training of Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 8 of 10 midwives and health visitors in the UK [51, 52]. This re- There are several limitations to the research to be flects poor integration of available guidance in to pre and taken in to account when considering the implications post-registration training [24]. Future curriculum revisions of the findings. Convenience sampling was necessary for need to educate about the complexity and range of ED logistical reasons however, it limits the representative- and ED behaviours, and include the changes in symptoms ness of the sample and generalisability of the findings. that may be experienced during and after pregnancy [3, There may have been recall bias as most women were 6–9]. Research is needed to explore facilitators to disclos- reflecting on past experiences of antenatal care. The sin- ure to identify acceptable means of enquiry and manage- gle eligibility question may have been ambiguous in the ment that are sensitive and responsive to the needs of absence of a clinical diagnosis and did not distinguish women, and findings need to be incorporated in to future between past or current ED. However this type of self- training. Training also needs to address individual atti- report indicator was used primarily for practical reasons, tudes about ED given the expectation for health profes- further it has been validated in an antenatal sample [62] sionals to deliver care in a consistent manner. and no ED screening measures have been validated in Other system level barriers to identifying ED in preg- pregnancy. Future research could focus on women who nancy and postnatally were identified, specifically poor have been clinically diagnosed with ED. continuity of care and poor communication between health professionals and women, and between health Conclusions professionals. Women and health professionals described There are several important barriers to the identification the lack of opportunity and time within routine ante- of ED in pregnancy and the postnatal period. Stigma had a natal and postnatal care contacts to discuss ED in a major impact on women’s disclosure of their illness, whilst comfortable way to encourage disclosure, with midwives health professionals had poor confidence in identifying advocating the potential benefit of a ‘case loading’ model ED as they lacked evidence-based knowledge and training. of midwifery care. This model of midwifery care is con- The need to identify perinatal mental health problems has sidered to promote better continuity of care in preg- been increasingly recognised, however ED continue to be nancy and is advocated in UK policy and guidance [53, neglected and it is important to raise awareness with 54] and other countries with similar healthcare systems health professionals. Similarly, clinical guidance aimed at such as Australia [55]. Case loading models of midwifery responding to the rising prevalence of obesity focus on care have been associated with better maternal and in- changing nutrition but not on ED behaviours that might fant outcomes, patient satisfaction, and cost effectiveness affect nutrition. Improving ED education and training for in comparison to other models of maternity care [56– health professionals may contribute to reducing stigma 58], yet provision remains variable [59, 60]. Poor com- and increase confidence in identifying ED. The barriers munication between health professionals was similarly identified in this research need to be addressed if recogni- an important barrier as methods of relaying concern tion and response to women with ED during the perinatal about women were complicated by the need to balance period is to improve. communication of crucial information with respecting the sensitive and confidential nature of disclosure. The Additional file issue of communication of risk between acute and pri- mary care services is increasingly affected by fragmented Additional file 1: Study 1: Mixed-measures survey. (DOCX 13 kb) and poorly integrated maternity services, particularly in Additional file 2: Study 2: Focus group topic guide. (DOCX 16 kb) primary care settings with services central to coordinating Additional file 3: Study 1: Themes with illustrative quotations. (DOCX 14 kb) healthcare [61]. Addressing these system level barriers Additional file 4: Study 2: Themes with illustrative quotations. (DOCX 15 kb) could promote an environment conducive to open discus- sion and support the role of the health professionals in the Abbreviations identification of ED in the perinatal period. AN: Anorexia Nervosa; BED: Binge Eating Disorder; BN: Bulimia Nervosa; ED: Eating Disorders; NHS: National Health Service; NICE: National Institute for Strengths and limitations Health and Care Excellence Strengths of this research include the exploration of expe- riences from both women and health professionals, with Acknowledgements We are extremely grateful to the women, students, staff, NHS Trusts and consistency in the findings between the two groups. Re- Universities that have contributed to this research. We would like to thank search findings are likely to be relevant for women who NetMums for their support in administering the survey. We would like to have ED regardless of place of birth, with issues for health thank Dr. Kylee Trevillion for contributions to the data analysis, and Jennifer Elglumati for assistance with data collection. Finally, we are grateful for the professional training likely to be relevant in settings where support received from the Open Access Funding Team at the University women can access care from midwives and health visitors College London Library Services towards publishing this manuscript as an or an equivalent health professional. open access publication. Bye et al. BMC Pregnancy and Childbirth (2018) 18:114 Page 9 of 10 Funding 3. Easter A, Bye A, Taborelli E, Corfield F, Schmidt U, Treasure J, et al. Recognising DB is supported by the National Institute for Health Research (NIHR) the symptoms: how common are eating disorders in pregnancy? Eur Eat Collaboration for Leadership in Applied Health Research and Care South Disord Rev. 2013;21:340–4. https://doi.org/10.1002/erv.2229. London at King’s College Hospital NHS Foundation Trust (NIHR, CLAHRC- 4. Pettersson CB, Zandian M, Clinton D. Eating disorder symptoms pre- and 2013-10022). AE is funded through a King’s Improvement Science Fellowship postpartum. Arch Womens Ment Health. 2016; https://doi.org/10.1007/ award. King’s Improvement Science is part of the NIHR CLAHRC South s00737-016-0619-3. London and comprises a specialist team of improvement scientists and se- 5. Turton P, Hughes P, Bolton H, Sedgwick P. Incidence and demographic nior researchers based at King’s College London. Its work is funded by King’s correlates of eating disorder symptoms in a pregnant population. Int J Eat Health Partners (Guy’s and St Thomas’ NHS Foundation Trust, King’s College Disord. 1999;26:448–52. Hospital NHS Foundation Trust, King’s College London and South London 6. Blais MA, Becker AE, Burwell RA, Flores AT, Nussbaum KM, Greenwood DN, and Maudsley NHS Foundation Trust), Guy’s and St Thomas’ Charity, the et al. Pregnancy: outcome and impact on symptomatology in a cohort of Maudsley Charity and the Health Foundation. NM was funded by a National eating-disordered women. Int J Eat Disord. 2000;27:140–9. Institute of Health Research (NIHR) clinician scientist award (DHCS/08/08/ 7. Crow SJ, Keel PK, Thuras P, Mitchell JE. Bulimia symptoms and other risk 012). The views expressed in this publication are those of the authors and behaviors during pregnancy in women with bulimia nervosa. Int J Eat not necessarily those of the NHS, the NIHR or the Department of Health. Disord. 2004;36:220–3. https://doi.org/10.1002/eat.20031. 8. Micali N, Treasure J, Simonoff E. Eating disorders symptoms in pregnancy: a Availability of data and materials longitudinal study of women with recent and past eating disorders and The datasets generated and analysed during the current research are not obesity. J Psychosom Res. 2007;63:297–303. https://doi.org/10.1016/j. publicly available as individual privacy could be compromised but are jpsychores.2007.05.003. available from the corresponding author on reasonable request. 9. Crow SJ, Agras WS, Crosby R, Halmi K, Mitchell JE. Eating disorder symptoms in pregnancy: a prospective study. Int J Eat Disord. 2008;41:277–9. https:// doi.org/10.1002/eat.20496. Authors’ contributions 10. Easter A, Solmi F, Bye A, Taborelli E, Corfield F, Schmidt U, et al. Antenatal All authors contributed significantly to this work. AB and NM conceived and and postnatal psychopathology among women with current and past designed the studies, with input from JS, DB and AE. AB carried out the data eating disorders: longitudinal patterns. Eur Eat Disord Rev. 2015;23:19–27. collection. AB and MKM analysed the data. All authors contributed to https://doi.org/10.1002/erv.2328. interpreting the findings. AB drafted the manuscript, and all authors read 11. Micali N, Simonoff E, Treasure J. Pregnancy and post-partum depression and and approved the final manuscript. anxiety in a longitudinal general population cohort: the effect of eating disorders and past depression. J Affect Disord. 2011;131:150–7. https://doi. Ethics approval and consent to participate org/10.1016/j.jad.2010.09.034. Ethical approval for the research was granted by the University College 12. Bulik CM, Von Holle A, Siega-Riz AM, Torgersen L, Lie KK, Hamer RM, et al. London’s Research Ethics Committee (Ref. 3735/001 and 3735/002) and the Birth outcomes in women with eating disorders in the Norwegian mother Joint Research and Development Office for Great Ormond Street Hospital for and child cohort study (MoBa). Int J Eat Disord. 2009;42:9–18. https://doi. Children NHS Foundation Trust & The UCL Institute of Child Health (Ref. org/10.1002/eat.20578. 11BS33). Women’s consent to take part in the survey was implied by virtue 13. Easter A, Treasure J, Micali N. 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Published: May 15, 2018

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