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

Design and setting

A mixed-measures survey of pregnant and postnatal women with current or past ED was conducted over a seven-month period. Women were recruited via a national parenting website, Netmums, which is a UK-based online parenting organisation with over 1.7 million members. Ethical approval was granted by the University College London’s Research Ethics Committee (Ref. 3735/002).

Recruitment and procedure

The study employed convenience sampling by inviting women to voluntarily take part in an online survey via a study advertisement on the organisation website. Before commencing the survey, women were asked to read the information about the study displayed on the website. To be eligible, women had to answer yes to “Do you have, or have you had an eating disorder?”, and respond to “How many children do you have?” with either the number of children or that they are currently pregnant. For women who were eligible and willing to take part, consent to participate was implied by virtue of survey completion. The survey was developed specifically for this study, and questions of interest were a combination of seven Likert-type scale questions and an open-ended question (see Additional file 1).

Participants

Analysis

Data were analysed using the thematic analysis approach described by Braun and Clark [33]. This approach is an inductive and iterative process involving six phases of analysis: familiarisation with data, generation of initial codes, searching for themes among codes, reviewing themes, defining and naming themes, and producing the final report. Data were independently coded by two researchers (AB and KT), both of whom were trained in qualitative research methods and analysis. The rating-pair familiarised themselves with the data and independently coded the complete data set to ensure reliability and thoroughness, ensuring full consideration could be given to patterns within the data. The pair discussed their codes together, with an 89% agreement being achieved by the rating-pair. At this stage, codes with similar information were grouped, discrepancies discussed, and agreement sought before amendments were made and emerging themes sought. The process was iterative throughout, with continual reference to the original data to validate and refine emerging themes. The themes were then clustered into subordinate themes, and finally superordinate themes. The research team contributed to the refining, naming and interpretation of the themes. Quotes that were illustrative of the themes and subthemes are presented in the results and additional files.

Design and setting

Focus groups with student and qualified midwives and health visitors were conducted over a seven-month period at participating universities and NHS hospital and community services in the South of England. Ethical approval was granted by the University College London’s Research Ethics Committee (Ref. 3735/001) and the Joint Research and Development Office for Great Ormond Street Hospital for Children NHS Foundation Trust & The UCL Institute of Child Health (Ref. 11BS33).

Stigma

Stigma of ED was an important theme for women’s non-disclosure to a health professional. Many women reported that they felt shameful and embarrassed and feared judgement. Some women described feeling judged by health professionals based on their physical appearance, as illustrated by one woman who stated: “I was overweight according to my BMI. I didn’t think they would believe me to tell them I had an actual problem. I was patronised by more than one healthcare professional who tried to educate me on nutrition. I got the impression they thought I was just lazy and ate junk food all of the time when this wasn’t the case. I felt they were too judgemental to approach” (W42). A few women expressed concern that a disclosure would lead to unwanted referrals to social services and other services: “I would have been to worried to discuss with my midwife etc. for fear of being reprimanded for it (i.e. referred to social services” (W49).

Lack of opportunity

Several women expressed a lack of opportunity to disclose and discuss an ED with a health professional. It was felt there was limited and insufficient enquiry by health professionals as “they didn’t ask and it wasn’t raised as a concern” (W67). One woman expressed difficulties in establishing a rapport with a midwife that may have facilitated a disclosure: “I didn’t have the same midwife for long enough to speak to them, it was rather stressful and upsetting” (W21).

Preference for self-management

Some women reported not disclosing their ED to a health professional as they did not need or want specialist care and preferred to self-manage their disorder: “I don’t like to talk about it and think I can manage on my own” (W26), and “I just wanted to deal with it myself” (W36). In some cases, this feeling appeared to relate to how long their ED had been undetected for: “I don’t really like to talk about it I have had some sort of disordered eating for a very long time it is very much part of me and no one else’s business” (W27).

Current ED symptomatology

For some women disclosure was dependent on their current mental health status and perceived need to disclose a history of an ED to a health professional. A few women who experienced ED prior to becoming pregnant did not think it necessary to raise this with a healthcare professional: “I didn’t think it was relevant as I have been OK for a few years now” (W23). Other women reported improvements in ED symptoms during pregnancy so similarly did not feel it relevant to disclose: “It wasn’t affecting me during my pregnancy, it helped” (W50) and “I felt like I was a lot better when I fell pregnant” (W30).

Illness awareness

For several women, disclosure of an ED was dependent on their awareness of ED and acknowledging that their symptoms were that of an ED. This was particularly notable in women with BED as retrospectively some considered that they had dismissed their binge eating behaviours as general over eating:

“Binge eating doesn’t seem like that big of an issue and I’ve never seen it as an eating disorder before” W4.

“I have only really just recognised that I have an issue & at the time I was pregnant did not realise. I just thought I was a greedy person” W34.

System constraints

System constraints and associated sub-themes were the dominant theme affecting the identification of ED among health professionals. All the professionals reported receiving minimal, if any training on ED as part of their pre or post-registration clinical education, as 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 knowledge had to be inferred from other taught topics as ED were not specifically addressed, as illustrated by one qualified midwife involved in midwifery education: “it wouldn’t be a module…it would be linked into mental ill health or BMI” (P22). Several qualified and student participants reported receiving training, but considered that this was a general introduction to ED which was not specific to women during or after pregnancy and did not clarify their clinical role in identifying or managing ED: “I don’t know whether it was actually mentioned apart from refer to a dietician, there wasn’t really any practical advice of what we need to do” (P17). Some student midwives felt that module and programme leads expected knowledge of ED to be gained from self-directed learning or ‘learning’ in clinical practice: “I think university often relies on us learning this kind of thing in practice that obviously we’ve got so much learning in the three years” (P4).

Across all groups, most participants felt that the media was their main source of ED knowledge, with personal and previous clinical experience and training less likely to be described as a source. Most participants expressed limited understanding of ED beyond food-restriction associated with AN and self-induced vomiting associated with BN, and were not aware of implications for maternal and infant health. Some reported a lack of awareness that ED was classed as a mental health disorder, as one qualified health visitor explained: “I have a very limited knowledge about the, those terms as in Bulimia and Anorexia, I’ve heard the words being thrown round quite a lot…but what I know as well is that it’s kind of linked…to mental health issues” (P30). Consequently, many health professionals lacked evidence-based knowledge on ED which impacted on their confidence in enquiring and identifying ED. One qualified midwife described: “it’s really hard when you’ve, when people give you information but you don’t know anything about it or there’s nothing much you can do” (P17), and likewise this feeling was expected to affect disclosure by women: “It’s that kind of feeling that, like a bit awkward and stuff like you don’t really know what to say and then it’s not going to help the women open up and discuss anymore with you” (P4).

Health professionals related their poor awareness of relevant policies, guidance, care management plans and referral pathways to their lack of relevant training on ED: “If it’s in the trust policy and guidelines I haven’t found it yet because I haven’t sort of come across it or it hasn’t been emphasised in the training” (P3). Several qualified and student professionals reported not routinely including ED when asking women about their history of mental health problems: “I never mention those words, I don’t think I ever ask a question that you know” (P11). However, several midwives that had asked women felt “there’s no point in asking the question if you don’t know what to say next” (P13) referring to the lack of awareness on care pathways.

Midwives reported that time constraints in antenatal clinics would be likely to impact on their ability to enquire effectively about ED, with opportunities to screen for physical and mental health risk often limited to the initial pregnancy ‘booking’ appointment: “these really big questions you know which can’t just be rushed over” (P15). Some health visitors reported they would ask about women’s mental health at a ‘new baby’ visit which was usually allocated more time than other routine clinic appointments, but there was less focus on this being the main opportunity as “when you see them for the first visit…you know the chances are you won’t see that person again…I’ve got someone who comes to clinic…the health visitor probably never saw her again anyway, whereas now it would be much more appropriate for me to say to her” (P31).

In all groups, poor sharing of information about a woman’s physical and mental health was reported to be problematic. Qualified and student midwives reported limited means of relaying sensitive information or raising concerns about a woman’s mental health between colleagues. A woman’s pregnancy and medical history was expected to be documented in the woman’s handheld maternity notes, with concerns about confidentiality if a woman’s history of ED was included. Several midwives used domestic violence as an example of the limitations of using women’s handheld notes: “obviously because they are handheld notes we’re very careful of what we write in them” (P3). Communication between services particularly within primary care, for instance between the family doctor (GP), midwives and health visitors, was described by some qualified health visitors as limited, with services increasingly fragmented across acute and primary healthcare sectors: “there was one midwife in every Sure Start and we were all attached so we would always be able to liaise with that midwife and they would liaise with us…now it’s like five midwives, like different midwives’ every time and they, they don’t build up that kind of rapport” (P26). Sure Start is a UK parenting support programme, with centres primarily across England with slightly different versions in Wales, Scotland and Northern Ireland, but funding cuts have led to many of these centres closing in recent years [34]. Clinicians felt there were few opportunities to be involved in shared care as part of a multidisciplinary team, resulting in limited access to mental health expertise within or between services, particularly within health visiting: “if you had some supervision around those sorts of issues, any sorts of issue where you’re just feeling like you’re holding something but you haven’t necessarily got the skills” (P26). Furthermore, a few health visitors described poor awareness about ED generally among health professionals and not isolated to health visiting: “I do really think that if we had it everybody else in the community teams would need it too because there would be no point in just training us if it then stopped with us” (P27).

Recognition of role

Many clinicians were in favour of enquiring about ED but several considered their confidence and competence to identify complex mental health problems was limited, and their role should be more advisory and supportive. This was illustrated by one student midwife who described: “we tell people what not to eat but not how do you eat” (P3). Some qualified midwives felt that the primary focus in antenatal care was physical wellbeing of the woman and the fetus rather than the woman’s mental health: “We would be just making sure that the baby was growing adequately… and then leaving the woman well alone in a way just focusing on the wellbeing of the baby” (P11). The focus on the infant after the birth was similarly expressed by some of the qualified health visitors. A few student midwives considered whether women’s perceptions of their clinical roles could support or hinder a discussion about ED as “a midwife…usually it’s for normal pregnancies, normality, and also is a figure that only she’s for the women and babies and the doctors maybe they seem, or the mental health services don’t sound probably very nice…maybe it’s easier because they know that this, the midwife is gonna follow them through the pregnancy” (P2), whereas “the health visitors kind of some were viewed for the baby and kind of for the child’s sake not someone to support the mum” (P4).

Personal attitudes

The majority felt that health professionals needed to be empathic and positive so that women felt comfortable to raise and discuss their mental health problems: “there is no room for negativity in midwifery” (P12). However, one health visitor did express that she would feel uncomfortable to enquire about ED with women who were overweight compared to women who were underweight. One midwife discussed the need to recognise the health professional as an individual: “we make assumptions that we all will deliver that health promotion message when actually attitudes and beliefs are integral to who we are, influence how we ask the question” (P22).

Stigma and taboo

Health professionals in all groups discussed the stigma of ED, with some referring to it as a ‘taboo’ subject for women and clinicians, with less experienced midwives and health visitors describing greater anxiety about asking women. As one student midwife said: “it does feel kind of sometimes like it’s one of those taboo questions a bit like domestic violence…but you kind of like skirt over like ‘you haven’t ever had any eating disorders, have you? No right moving on” (P4). One qualified midwife explained: “one needs to be sensitive about these things, mental health issues equals social services take away baby” (P15).