Experience With Gd&t Inspection Methods and Drawing Review/approval Is Required
BMC Pregnancy Childbirth. 2018; eighteen: 25.
Experiences of gestational diabetes and gestational diabetes care: a focus group and interview study
Judith Parsons
iAdult Nursing, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, James Clerk Maxwell Building, 57 Waterloo Road, London, SE1 8WA UK
Katherine Sparrow
2Section of Psychological Medicine, Institute of Psychiatry, King's College London, London, UK
Khalida Ismail
3Department of Psychological Medicine, Institute of Psychiatry, King's Higher London, London, UK
Katharine Hunt
fourDiabetes Research Group, Diabetes & Nutritional Sciences Sectionalisation, Male monarch's College London, London, U.k.
Helen Rogers
fiveDiabetes Inquiry Group, Diabetes & Nutritional Sciences Sectionalisation, King'southward College London, London, UK
Angus Forbes
6Adult Nursing, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King'south College London, London, U.k.
Received 2017 Jan 27; Accepted 2018 Jan iv.
- Data Availability Statement
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The datasets used and analysed during the electric current study are available from the corresponding author on reasonable request.
Abstract
Background
Gestational diabetes mellitus (GDM) is an increasingly common condition of pregnancy. It is associated with adverse fetal, baby and maternal outcomes, besides equally an increased risk of GDM in future pregnancies and type ii diabetes for both mother and offspring. Previous studies accept shown that GDM can result in an emotionally sorry pregnancy, just there is little enquiry on the patient experience of GDM care, particularly of a demographically diverse United kingdom of great britain and northern ireland population. The aim of this research was to explore the experiences of GDM and GDM care for a grouping of women attending a large diabetes pregnancy unit in southeast London, Britain, in order to improve intendance.
Methods
Framework analysis was used to back up an integrated analysis of data from half-dozen focus groups with 35 women and semi-structured interviews with 15 women, held in 2015. Participants were purposively sampled and were representative of the population beingness studied in terms of ethnicity, age, deprivation score and body mass index (BMI).
Results
We identified 7 themes: the disrupted pregnancy, projected anxiety, reproductive asceticism, women as infant machines, perceived stigma, lack of shared understanding and postpartum abandonment. These themes highlight the often distressing feel of GDM. While most women were grateful for the intensive back up they received during pregnancy, the costs to their personal autonomy were high. Women described feeling valued solely every bit a means to produce a healthy baby, and felt chastised if they failed to attach to the behaviours required to achieve this. This sometimes had an indelible touch to the potential detriment of women's long-term psychological and physical health.
Conclusions
This study reveals the experiences of a demographically diverse group of patients with GDM, reflecting findings from previous studies globally and extending analysis to the context of improving care. Healthcare commitment may need to be reoriented to improve the pregnancy feel and help ensure women are engaged and attentive to their own health, specially later birth, without compromising clinical pregnancy outcomes. Areas for consideration in GDM healthcare include: improved management of emotional responses to GDM; a more than motivational approach; rethinking the medicalisation of care; and improved postpartum care.
Electronic supplementary material
The online version of this commodity (ten.1186/s12884-018-1657-ix) contains supplementary material, which is bachelor to authorized users.
Keywords: Gestational diabetes, Intendance experience, Pregnancy care, Emotional distress, Diabetes prevention
Background
Gestational diabetes mellitus (GDM) affects up to v% of all pregnancies in the Great britain [1], between i% and 25% of pregnancies globally, [two] and its incidence is increasing [iii]. GDM is associated with an increased risk of agin fetal, babe and maternal pregnancy outcomes including preeclampsia, master caesarean section, excessive fetal growth (large for gestational age or macrosomia), shoulder dystocia or nativity injury, neonatal hypoglycaemia, and admission to neonatal intensive care [4]. While the loftier blood glucose of GDM unremarkably resolves after delivery, women with GDM have an increased risk of further episodes of GDM [5] and are seven times more than likely to develop type 2 diabetes mellitus (T2DM) [half dozen] than women with normoglycaemic pregnancies. In addition, there is growing prove that hyperglycaemia in pregnancy has a programming event on the long-term metabolic health of the offspring, increasing their risk of T2DM [7, 8].
The run a risk of adverse pregnancy outcomes can be improved by interventions directed at reducing blood glucose during pregnancy. These include cocky-monitoring of blood glucose, lifestyle changes and the use of glucose lowering therapies such as metformin and insulin [9–11]. However, the bear upon of these interventions changes the context of a women'due south pregnancy to one that is highly medicalised [12, 13], as they crave intensive follow-upwardly. Electric current guidance from the Britain National Institute for Wellness and Care Excellence (Dainty) [14] recommends that women with GDM should be offered screening for persistent diabetes at 6-thirteen weeks postpartum, lifestyle advice to reduce the risk of future T2DM, and annual screening for diabetes.
In a metasynthesis of 16 qualitative studies we found that women with GDM experienced feelings of shock, upset, denial, fear, and guilt upon diagnosis, also as a loss of normality and personal control [fifteen]. Subsequent to this analysis several other studies have reported negative emotional effects following a GDM diagnosis [16–21], including a sense of heightened pressure and a perceived disconnect between future diabetes prevention recommendations and their ain cultural practices [16, 19]. Nonetheless, near qualitative studies exploring women's experiences of GDM have not considered women's relationships with their healthcare providers, women'due south views on how to enhance care provision, and their experience of postpartum and preventive intendance in relation to their hereafter diabetes risks. Of the three previous studies conducted in the Great britain, two included participants with mainly White ethnicity [20, 22]. Even so, although these studies were locally representative, this does non reflect the overall GDM population, which has a predominance of women of Asian, Black African and Caribbean ethnicity [23] and is more normally found in socially deprived communities. In the most recent Uk-based study [24] participants were more ethnically diverse, just this was a minor written report comprising nineteen women.
In this newspaper nosotros present a study that aimed to draw the experiences of women from a demographically diverse population of their GDM and GDM care, to help inform healthcare delivery for women both during and after pregnancy.
Methods
The study used in-depth personal interviews and focus groups to arm-twist women's experiences of GDM and GDM care. Nosotros obtained approving from the National Research Ideals Service (reference xiii/SW/0141). We chose to use both interviews and focus groups in gild to achieve a more comprehensive understanding of the information [25]. Focus groups have the potential advantage of utilising the grouping effect [26, 27] to explore areas of consensus and diversity in the experiences within the group [28]. Interviews take the advantage of allowing the interviewer to build trust with the interviewee also every bit provide the interviewee the opportunity to analyse their own motivations, therefore improving the quality of the data [29]. In club to cater for different preferences and to widen our participation nosotros offered participants the choice of either a focus group or an interview, and whether the interview took place on the phone, in a non-clinical building on the infirmary site, or at the participant'due south home.
Setting
The study was conducted in a diabetes pregnancy unit at a big teaching infirmary in London, Uk. The unit currently sees around 200 women with GDM per twelvemonth and has expert biomedical pregnancy outcomes, with rates of macrosomia and preeclampsia lower than in the intervention arm of the ACHOIS trial [9] (a large study exploring whether handling of GDM would reduce perinatal complications) and similar low rates of shoulder dystocia and emergency Caesarean section. To attain these outcomes the women are intensively managed past a multidisciplinary team of diabetes specialist nurses, doctors, dietitians, obstetricians and specialist midwives with weekly or fortnightly clinic visits. The unit is based in an out-patient setting and is nested within a general diabetes clinic. This constitutes a very dissimilar context to the management of a normal pregnancy in the Great britain, where women are seen much less frequently and midwifery care is generally delivered in the customs.
Participants
Participants were eligible if they had had a diagnosis of GDM within the last 5 years (modified Earth Wellness Organization (WHO) criteria, [thirty]), were aged ≥18 years, able to speak and understand English and had a body mass alphabetize (BMI) of ≥25 kg/m2 (or ≥22 kg/mii if Asian, in line with the Diabetes Prevention Program criteria [31]). Participants were purposively sampled based on BMI, ethnicity and area level impecuniousness scores, in order to ensure we included a plurality of cultural voices [32]. Potential participants were identified from clinic lists and sent invitation messages accompanied by an data sheet. To enhance participation and to ensure the sample included 'hard-to-reach' women we gained ethical approval to contact women directly by telephone. Participants were given a £10 voucher to acknowledge our gratitude for their time.
Data collection
Demographic information were collected from routine medical records prior to the interviews and focus groups, and and then confirmed past the participant. Participants signed a consent form, or in the case of phone interviews, gave verbal consent.
The interviews and focus groups were conducted past 2 researchers (JP, KS) in March and April 2015. Nosotros did not divide focus groups by any demographic factors, because based on our pilot focus groups, nosotros believed that homogeneity in the group was achieved through the shared experience of having had GDM [33]. In the focus groups one researcher facilitated the discussion while the other noted downwards observations. The interviews and focus used the aforementioned topic guide (Additional file one) in order to facilitate data integration. The topic guide was reflective of the study aims, addressing women'south experiences of GDM and the intendance they received, and was piloted prior to the main data collection. The researchers actively probed responses to elicit in-depth accounts of the women's views and experiences, following Rubin'southward methodology [34]. The focus groups were similarly structured and the researchers managed the groups to ensure all women participated and voiced their experiences. The interviews took place on the phone (n = 7), in participants' homes (north = 5), in a non-clinical room at the hospital (n = two) or at the participant's workplace (n = one) and lasted between 20 and 120 min. The focus groups were held in a non-clinical coming together room and lasted betwixt 60 and 120 min.
Data analysis
The interviews and focus groups were digitally recorded, transcribed verbatim and imported into NVivo version 10 for analysis. Framework analysis [35] was used to analyse the information. This approach allows themes to develop both from the research questions and the transcribed texts. It as well ensures a close link to the data is maintained throughout the analysis procedure, it allows data to be explored both by theme and in the context of each individual (or focus group), and its highly structured and systematic process allows for data to be analysed by more than one researcher [36]. The arroyo was also chosen for its flexibility, as it is non strongly linked to a particular theoretical approach [36], other than subtle realism [37]. The data were analysed in 5 stages following this arroyo:
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Familiarisation – at this stage two researchers (JP, KS) read all the transcripts repeatedly in order to familiarise themselves with the raw data.
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Identifying a thematic framework – 3 researchers (JP, KS, AF) independently coded a option of transcripts, and so met to hash out the codes. From this they adult an initial thematic framework.
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Coding/indexing – the framework was so applied systematically and continually revised until the data from all the transcripts were captured. A codebook of themes was developed and modified by the researchers post-obit an iterative process. Two researchers (JP, KS) coded all the transcripts and met often throughout the process to address any discrepancies. A third researcher (AF) then moderated the codes and addressed any uncertainties or ambiguities.
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Charting – later on coding, the data was entered into framework matrices for each theme in NVivo.
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Mapping and interpretation – during the estimation stage nosotros detected elements of the information in order to group information into categories and identify cardinal dimensions, as described by Ritchie et al. [38] These primal dimensions became the main themes of the results.
The last component of the analysis was to interpret the themes into potential theoretical models to describe the experiences of women during a GDM pregnancy.
Results
From a full population of 614 women with a GDM pregnancy betwixt 2010 and 2014, 536 met our inclusion criteria based on their medical records. Nosotros were able to contact 118 of these women, and 78 (66%,) agreed to participate. Reasons for not-participation were: unavailable on the dates offered (n = 9), non interested (northward = 8), requested more information but were later uncontactable (n = vii), did not meet inclusion criteria (n = seven), overseas (northward = 2), too busy (n = 2), withal angry about intendance received (n = ane), subsequently diagnosed with type ane diabetes (north = 1) and long term illness (north = ane). Xx eight of the women did non attend their interview or focus grouping session. A total of 50 women took part (fifteen were interviewed and 35 attended i of six focus groups). The participants were representative of the eligible population of women with GDM attending the dispensary in terms of age, ethnicity, BMI, and parity (Tabular array1).
Table i
Demographic characteristics of participants compared to the clinic population
| Participants | Clinic population | |
|---|---|---|
| Historic period | ||
| Mean (years) | 37.7 (range: 21-53) | 36.5 (range: 19-53) |
| Ethnic group | ||
| Black | 50% | 54% |
| White | 26% | 27% |
| Asian | 18% | 14% |
| Mixed | half-dozen% | 2% |
| Other | 0% | 2% |
| BMI | ||
| Hateful (kg/one thousandii) | 34.7 (range: 25-49) | 33.0 (range: 21-57) |
| Deprivation rank | ||
| Mean (IMD) | 7688 | 8462 |
| Parity | ||
| Mean (number) | 2.2 | 1.four |
| Primiparous (%) | 31% | 17% |
| Multiparous (%) | 69% | 83% |
Themes
Vii main themes were identified: the disrupted pregnancy, projected anxiety, reproductive divineness, women as infant machines, perceived stigma, lack of shared understanding, and postpartum abandonment. These themes are presented below together with excerpts of supporting data.
The disrupted pregnancy
Many women in this written report found the diagnosis entirely unexpected, and the immediacy of enforced dietary change, pharmacological handling, frequent hospital visits and self-glucose monitoring overwhelming and frightening: 'I didn't sympathize very clearly why it happened all actually, actually quickly. It was quite difficult to get my head around information technology actually' (Interview participant (IP) age 27, iv children, mixed ethnicity).
This disruption left women 'in complete stupor' and extremely scared of the possible effects on the babe. They felt panicky, 'freaked out' and some burst into tears. Two women described leaving the hospital immediately upon diagnosis without waiting to see the dietician: 1 explained, 'I think I was and so overwhelmed I just wanted to go out of at that place'. Some other described the intense experience of diagnosis:
'Information technology was like really intense, you lot know, I'd gone to [the infirmary] just for a booking in appointment with the midwife and then immediately I was sent through to a dietician so the dietician said, 'from now on you're going to be just with this team and this squad will make certain that this happens and that happens and the baby's at hazard of this and that and people who have gestational diabetes, some accept babies die' (IP historic period 44, 2 children, Blackness British).
Women identified that an earlier alarm about their GDM take a chance would have ameliorated the stupor of GDM and also permit them the opportunity to make dietary changes sooner.
Conversely, a few women did not discover the diagnosis shocking or peculiarly emotive. Some women did non believe the diagnosis ('I believe I don't have [diabetes], I don't know, but I'm not diabetic' (IP historic period 45, vi children, Somali)), and another 'I was shocked and not shocked… The reason I wasn't shocked is because I was warned that, you know, your parents have got diabetes, it might be hereditary' (IP historic period 52, 3 children, other Asian).
Projected anxiety
Women's experiences of GDM care and their interaction with healthcare providers were oftentimes a complex combination of feeling well cared for all the same over-scrutinised. This perhaps reflects the level of responsibility and anxiety felt by healthcare providers in achieving a good clinical issue for the baby in a limited time frame. Participants discussed being closely monitored and given difficult and sometimes threatening data about their baby's risk. While many women constitute this level of attention reassuring and liked the fact it meant that they 'had to deport', they likewise found it difficult:
'I know they are helping me just, I hateful, they are very strict. Honestly, whatsoever fourth dimension I got significant I went to do the GTT [oral glucose tolerance test], I said to myself 'oh please God let information technology be negative, I don't desire to get and run across these people', considering y'all can't miss them or they will chase you. They will chase you… [This] scare [sic] a lot of people...we all want to be gratuitous, exercise our ain thing, it's not similar some people telling usa what to exercise' (Interview participant (IP) age 42, iv children, Ghanaian).
Women as well described how the healthcare provider's anxiety sometimes manifested itself in a negative discourse where they felt chastised past the health professional if they were not-compliant: 'So we're already stressed. And at present you're going to shout at the states for not bringing the monitor and having a KFC...it merely feels like yous're getting in trouble' (Focus grouping participant (FGP) historic period 30, 2 children, Black Caribbean). This interaction compounded the women's anxiety and sometimes led to matted eating, as the same participant described: 'I'm a condolement eater so when I'yard upset I have to eat...At that place was one detail day I retrieve and she [the healthcare provider] really upset me and I went straight to the canteen'.
Overall, the demands exerted on women by the healthcare providers to comply with the diet and treatment regime were stressful for many: 'The whole pressure with the whole everything, it really did touch on me and I think it's probably one of the worst times I've had in my life actually' (IP age 39, parity unknown, Blackness British). For some women, this feel was so traumatic that it prevented them returning for a postpartum glucose test: 'I know I need to keep getting checked, but I don't, because of how bad my experience was of information technology: I don't want anything to do with it' (FGP age 28, 1 child, Black British). A few women did non find the experience stressful at all, as 1 participant reported: 'I felt very normal throughout the pregnancy; there was no bad experience during the pregnancy' (IP age 33, three children, Nigerian).
Women were also subjected to the healthcare providers' feet during and immediately afterwards the nativity, as ane participant described: '…my infant's feet were like black and blue from all the poking, and the [midwife] cried… She couldn't exercise it. She had to compose herself and then come back and do it. I hateful I was crying anyway but information technology was such a horrible experience' (IP historic period 27, four children, mixed ethnicity). Overall the impression given by the women was that there was intense business organisation expressed by the health care professionals for the baby's welfare, which led to heighted sense of pressure on the women and made many very anxious and fearful.
Reproductive asceticism
Women felt emotionally challenged by the need to observe a strict code of personal behaviour and externally imposed asceticism to ensure a salubrious infant. This oftentimes led to negative reflections on their health behaviours prior to their diagnosis: women mentioned 'chirapsia themselves up' and wondering if the condition was due to the fact they had 'never been able to resist chocolate'. I said, 'I felt kind of, I estimate, disappointed in myself that I'd let things get to that phase' (IP age 39, two children, Sri Lankan), and some other: 'All I could think about was how I'd damaged my babe' (IP age 34, one child, Indian).
Some of the behavioural requirements placed on the women, particularly self-monitoring of blood glucose, resulted in feelings of failure. Several women felt distress at having to monitor their blood glucose, 'a test y'all're potentially declining four times a day' (FGP historic period 43, 1 kid, Greek), and described it as the worst attribute of having GDM. Participants struggled with the fact that their blood glucose readings were often loftier, in spite of their abstinent efforts.
I wouldn't desire to look, I'd make my married man expect, like 'what does it say?', and I got so sad I only stopped eating... I was crying all the time and I just stayed in bed for ages and there was like a big fear...that was the saddest role, having to check, yeah, four times a day, it was just hard (FGP historic period 28, 1 child, Black British).
Conversely, some women did not alter their behaviours following GDM diagnosis and connected equally before, every bit ane participant described: 'I'll be honest. I didn't take no notice. I ate what I wanted, I washed what I wanted and my baby'south fine' (FGP age 30, ii children, Black Caribbean).
The brunt of responsibility of maintaining the intense regimen to lower their blood glucose provoked an emotional response both in relation to women'southward beliefs about how they have caused their GDM and to their ain cocky-censure every bit they struggled to accommodate the new behaviours demanded of them or when they failed to attain the suggested diet and glucose targets. Much of these emotions were reflective of the feared consequences for their babe.
Woman every bit baby machines
Participants described feeling unimportant in the GDM process, and some were aggrieved by the lack of autonomy they were permitted in relation to their pregnancy: 'anything you might retrieve, it's not actually important' (IP age 39, parity unknown, Black British). One participant described how the threat of impairment to the baby was held over her to secure compliance:
'I think because I was resisting information technology and I was told by a midwife that basically, you know, 'if you try and resist they will throw everything at you lot if you try and take back a fleck of autonomy and a flake of command, they will throw the volume at you'. I was constantly being told 'if you don't practice what we say your babe might dice, the baby might die, the baby might die…' I felt it was about control, because too the testify was what I was doing was working' (FGP historic period 43, 1 kid, Greek).
Indeed, the message received past the majority of participants from the healthcare provider was that the focus of business organization was for the infant – 'information technology was kind of more drilled into me that information technology was for the sake of your baby more than for yous' (IP age 27, four children, mixed ethnicity) – and the woman was a possible obstruction to the infant's wellbeing. 1 participant described the care team as having the attitude that: 'you might ruin that babe, nosotros don't want you to ruin that infant' (FGP historic period 28, 1 kid, Black British). Women discussed feeling that the infirmary claimed ownership of the babe: 'my married man sometimes says, "Have you noticed the [infirmary's] behaviours, it'due south not your child it's their child!"' (FGP age 36, 2 children, Bangladeshi). Another participant described her experience of a lack of bodily ownership during her pregnancy: 'In the end you only experience like you lot're a dead person walking with a babe inside you, do yous know what I mean? Similar all these terrible things are going to happen to yous' (IP age 42, 2 children, Black British).
Overall, women felt they were viewed objectively rather than personally, with the balance of command residing with the healthcare providers.
Perceived stigma
Women perceived that they were stigmatised for having GDM. In addition to the cocky-arraign they experienced as a result of enforced reproductive asceticism, they felt external recrimination for their status and believed they were not trusted by the healthcare provider. This stigma was perceived from both society in general ('all I would encounter on Tv is if you're overweight, yous're obese, you lot get diabetes and it's your ain error kind of thing. Even when I had gestational diabetes I felt like oh gosh, I've got gestational diabetes, you know, people are looking at me like oh, I'm overweight, that's why I've got it' (IP historic period 27, 4 children, mixed ethnicity)) and from healthcare providers ('I often got the feeling that wellness professionals thought that I just hadn't been thinking about my wellness or taking care of myself or putting any try and thought into it' (IP age 39, 2 children, Sri Lankan)). Consequently, women reported that their blood glucose readings were often not believed past health care providers: 'Sometimes, you lot know, if you're in a good mood you simply laugh, you say, 'you don't believe me?!' (IP age 42, 4 children, Ghanaian).
The stigma felt by the women was exacerbated past existence labelled equally 'diabetic' as opposed to 'significant', and by being treated in a diabetes setting rather than a usual maternity setting. Some requested to exist treated separately from people with long-term diabetes:
'I recall that would accept fabricated me feel like I was being treated more like a pregnant woman in the round rather than someone with a lifelong condition who hasn't been controlling it... Yeah, 'you're a diabetic, go with the diabetics over at that place, become to the diabetic clinic and you'll be seen with all the other diabetics and that's what you are now, y'all're a diabetic' (IP age 39, 2 children, Sri Lankan).
Many participants discussed means in which they felt judged. For example, ane woman described how assumptions were made based on her cultural background:
'sometimes they look at your cultural background and, ii people told me things similar, 'Oh, stay abroad from fried chicken and rice and peas.' And information technology's like, hang on a 2d. For a beginning, I don't eat fried chicken… it did just feel a chip, kind of, like, wagging finger syndrome. It was a case of, 'No, y'all don't know me, you can't look at my postcode, my historic period and my ethnic background and know virtually me and requite me advice on that.' Then I found it maybe a little bit patronising' (FGP age 43, 3 children, Black British).
The experience of stigma is identified as being labelled as a person who, through their own failings, has brought the condition upon themselves. It is experienced as a reduced sense of autonomy with loftier levels of external control and judgmental interactions.
Lack of shared agreement
Women sometimes reported a lack of shared agreement betwixt patient and healthcare provider. This was both in terms of participants' lack of comprehension of GDM, and their perception that the healthcare provider did not fully empathize with their position. The stupor of the GDM diagnosis coupled with the complex nature of its management left many women unable to digest information routinely given to them by healthcare providers, which resulted in confusion and farther feelings of not being in control. Ane participant explained, 'probably things were there [that] I don't understand were at that place at the time. I didn't sympathize what they were talking most' (IP age 44, 4 children, Black Caribbean).
Participants frequently perceived that the healthcare providers did not understand them, which again, lead to feelings of alienation, loss of trust and deceitful deportment. I participant described her relationship with the dietitian:
'She didn't empathise. She couldn't maybe have understood because I said, 'have you got kids?' and she says 'no'. OK and you conspicuously don't have an eating addiction, or you only have a metabolism that is faster than mine. I merely felt a bit - she used to say 'what did you take for lunch?' and I'd call back 'carrots, broccoli, a small portion of rice' and I'd had a KFC! I tin can't tell her that because I'd experience a bit embarrassed...I only call up it'south a scrap err, going to run across a very slim, perfect body lady and and so there's me' (FGP historic period xxx, 2 children, Black Caribbean).
This incongruity between the women and their healthcare providers often manifested as a perceived lack of attention to the participants' individual needs. Much of the discussion around this focussed on women'south views that the dietary communication they received was culturally irrelevant to them. One participant explained:
'The issue that I had was as a vegetarian. The person who was monitoring me, she didn't accept much noesis of Asian vegetarians' (IP age 52, 3 children, other Asian).
A few participants mentioned not being able to eat the pocket-sized portions advised, as it was out of keeping with their culture:
'We blackness, we Jamaican, nosotros go the wrong style eating things!...When I look on the canvass and it'due south similar one scoop of rice, only it, kind of, the food residual is, to me, it'due south kind of besides pocket-size… I have a problem with the nutrition … I tin't eat veg every day like a lot of people, particularly White, when they eat, their plate all the veg! And I find that wooooh!' (IP age 44, 4 children, Back Caribbean).
This lack of perceived agreement led to a loss of trust, and patients' confusion about GDM potentially exacerbated their feelings that they were not in control of their pregnancy choices.
Postpartum abandonment
In pregnancy, about women reported feeling very well cared for, in spite of their negative experiences: 'the diabetic dispensary, they conspicuously were very supportive' (IP age 48, 1 kid, other White). Notwithstanding, many women reported very picayune postpartum follow-up. Women found this surprising, considering they had been told they were at risk of diabetes: 'I had a really intense relationship... and then it was but cut, and it was similar 'now you lot're fine', but I'thousand not fine coz I'grand told I'thou at hazard' (IP age 38, 2 children, White British). Another woman explained, 'Once you've had your baby it'southward on your manner mate, we're done with you. They don't bother... One time they're done with your babe they're done with their chore' (FGP age 38, four children, British Indian).
Women mostly wanted to exist followed up and not to be 'forgotten'. Several participants had afterward been diagnosed with impaired glucose tolerance or T2DM and, in contrast to the pregnancy, had received no support. I participant with subsequent T2DM described how the healthcare provider had the power to assist her but did non, at present she was no longer pregnant:
'instead of you lot [the healthcare provider] waiting 'til me come and beg you to say, 'I can't lose the weight and I'm desperate', and and then all they put the blame on you like you aren't doing annihilation while they know everything… them have the coin, them know how to do it and whatever, similar nosotros don't know how to do it, we have to ask' (IP age 44, 4 children, Dorsum Caribbean).
Women described the lack of support for breastfeeding, resulting in guilt and feelings of disconnection from their babies. They described being encouraged to canteen or mix feed due to infant hypoglycaemia, and believed that staff did not prepare them for this nor spend fourth dimension supporting them with breastfeeding 'because it's user-friendly for themselves':
FGP historic period 28, 1 kid, Blackness British : I'm sure they run across women who accept gestational diabetes requite birth, and so the upshot with babe having low claret sugar, it must happen quite frequently. I hateful, we've all had information technology, so you would recall they would then await at that breastfeeding, because that is a massive thing for women just given nativity who want to be able to feed your baby. If we took it to heart in terms of 'I want to breastfeed', that absolutely killed my morale, absolutely completely. It took months to get over that.
FGP historic period 21, 1 child, Blackness British : I stood over the kettle and cried. Making bottles and it was just similar this isn't what I planned, you know.
FGP age 28, 1 child, Blackness British : Yes, completely. And now it's OK but in that location was no link almost, there was no information to effort and make you lot feel like [breast feeding] was possible.
This postpartum abandonment seemed to compound the message perceived by women that they were not important: their job was to do every bit they were instructed to produce a healthy baby and in one case this task was accomplished they were redundant and no longer of interest.
Discussion
Clinicians and women with GDM are under immense fourth dimension pressure to control blood glucose levels in order to produce a salubrious infant. This leads to a somewhat paternalistic healthcare context, where information and decisions are largely made by the healthcare provider on the assumption that health – in this case that of the baby – is the priority rather than personal choice and control. This is in contrast to current thinking about models of patient-provider interaction, where the paternalistic model is largely considered to exist justified only in emergency situations [39], and principles of shared-decision making [xl] and motivational enhancement [41] are generally favoured. The women's accounts relay a sense of alienation in which they are reduced to biological vehicles for the production of infants. The impact of medicalisation of women'due south care in high risk pregnancies on their autonomy has been reported previously. Furber et al. [42] found that obese women felt ignored as a result of excessive screening, and described feeling like 'an oven'. In improver, Figuera et al. [43] institute that women with GDM felt out of command as a result of the lack of selection and 'pour of interventions'. While this model has resulted in very good clinical outcomes with depression levels of complications, it comes at a toll to the women, heightening their emotional distress. Some women seem to resist this care approach and in the longer term, information technology may enforce a sense of ambivalence toward their own wellness.
A key theme is the sense of abandonment felt after delivery, as the period of intense intervention ends and women are left uncertain well-nigh addressing their diabetes gamble. A similar theme was identified in Morrison'south study on Australian women's experiences of GDM [17] et al., where women described 'no one caring' later their pregnancy was over. Aside from the missed opportunity to follow upwards women to address their hereafter diabetes risk, research from other fields shows that sudden abandonment later a period of intensive healthcare can result in feelings of vulnerability and a loss of importance [44]. This would advise that more attention needs to be given to the emotional distress that accompanies a GDM pregnancy and to postpartum support. All the same, it is important to notation such a change should not compromise the clinical outcomes, particularly every bit the women themselves value the efforts of the clinical team to help ensure their baby is healthy.
Another factor that appears important in driving the distress is women's sense of personal responsibility for the GDM. They experience guilt and shame that their previous behaviours may take contributed to their GDM, and once diagnosed, experience further guilt for failing to control blood glucose levels. This ascertainment is strongly concordant with previous studies of women's experiences of GDM [fifteen, 17, nineteen, 45, 46]. Similarly to previous studies [15, 19, 47], our participants were often shocked by the GDM and did not sympathise why they were not warned of the risks sooner, such that they might have modified their behaviours. While this would seem a logical request it is important to note that interventions in early pregnancy have to date non shown significant reductions in GDM [48]. Nevertheless, women may benefit from being prepared for the potential of GDM to both diminish the daze and to start to adapt their health behaviours in advance.
It is too noteworthy that many of the women either struggled with or resisted the self-management behaviours recommended in GDM. This resistance and struggle has been noted in previous studies. Carolan et al. [47] reported that women with GDM wanted more time to adjust to the new dietary restrictions and in Ghaffari et al.'s report [19] women struggled with dietary changes and administering insulin, due to lack of autonomy. The women's accounts advise there are a number of factors – both emotional and structural – that explain why the behaviour changes are so crushing. From an emotional perspective, the requirement to make immediate behaviour changes in response to a surprise diagnosis of a largely asymptomatic condition ways women do non accept time to adapt. Kubler-Ross'south model of grief [49] indicates that upon diagnosis of a disease, people ofttimes transition through several stages before accepting their diagnosis: denial, anger, bargaining and low. This takes time that, in the case of GDM, women are not afforded. Some women with GDM take not accepted their diagnosis and are in the denial phase of Kubler-Ross' model. Such an outlook may exist characterised by abstention behaviours and enforce a passive status on the women, reinforcing the decision-making behaviours of the healthcare providers.
Other women answer to GDM with fear. They accept their diagnosis, bold their babe is at great take chances ("I took it to be sort of, like, life and death", (IP age 39, parity unknown, Black British)) and follow instructions to their best abilities. In Evans et al.'s [fifty] study women with GDM experienced a sense of confusion and failure when blood glucose readings did not reflect the perceived attempt they were putting into their diet. Many of these women 'starve' themselves, a miracle also reported by Draffin et al. in their recent written report [24] and are deeply traumatised past self-arraign, failure to reach blood glucose targets and fearfulness of what might happen to their infant. This leads to feelings of depression and isolation, and sometimes a consummate disengagement after the birth. These women display unresolved feelings of trauma and some did not attend the postpartum glucose tolerance test, in spite of the belief that they were at risk of diabetes, because the trauma renders them wholly averse to any further connection with dieting, diabetes or diabetes care. Co-ordinate to Kubler-Ross' model, these women could be in the bargaining or depression stages of acceptance.
From a structural perspective information technology would seem that some of the challenges experienced by the women were products of their relationship with the healthcare provider and the style this was constructed in the process of care. While many women feel supported and cared for, others seem more resistant to the provider'south efforts to assistance them. They see no benefit to the shut monitoring and strict approach they are subjected to, and are not motivated to comply with their treatment except to avoid being chastised. Some actively turn down care by not taking medication and lying well-nigh food intake and blood glucose readings. Some participants wrestle for control with the diabetes clinic, and are sceptical almost information they receive. The underlying cause of this response is unclear, although information technology is notable that dissimilar women with blazon 1 diabetes [51], these women present the demands as coming from the healthcare team rather than from their baby. A few women reject their diagnosis or their care entirely. They experience aggrieved at the lack of autonomy they are given over decisions about medication, and believe their views and feelings are not taken seriously. These women find the monitoring and lack of trust from the healthcare provider extremely undermining and lose organized religion in their clinical intendance. This rejection often results in anger, and therefore a complete disengagement afterwards the nascence. This range of reactions to care is reflected in Morrision et al.'s survey of 393 women with GDM [17], which uncovered bully variance in perceptions of seriousness of GDM, levels of accommodation and reactions to the care provided.
While we have not included information from wellness professionals in this paper, it may be that the context of intendance experienced by the women is a product of the human relationship between the health professionals and the women. Due to the potential health implications for the baby and the time force per unit area, healthcare providers are unsurprisingly anxious to avert complications, and this anxiety may be projected onto the patients through the use of threatening or frightening language almost the risks to their baby alongside intensive behavioural monitoring. This projected anxiety, coupled with perceived stigma effectually GDM, and the alienation women experience from a normal pregnancy results in a traumatic experience. This includes feelings of isolation, depression, guilt, fear and defoliation, and can pb to resistance expressed as non-compliance, cant and disordered eating.
Pregnancies in general are becoming more medicalised as society is becoming more than risk-focused [52], which can overemphasise the adoption of controlling behaviors from health providers at the price of the women's personal autonomy. Feminist theorists have described the miracle of the 'public fetus', where recent technologies that let us to view images of the fetus have led to them being seen every bit a separate entity from the mother, rather than office of her [53]. This combination results in a model of antenatal care where medical experts and societal pressure encourage reproductive asceticism [54], and Lupton [52] described how in this scenario, the meaning body has also become public belongings, subjected to judgements and criticism. This would seem to resonate with women's experiences of GDM care, equally the women felt and so removed from the focus of their intendance that they described the hospital as the owner of the baby, equally if they had handed over all rights to their body. The seeming unimportance of the woman every bit an private in her own right is re-emphasised following the birth of her baby, when the intensive level of care abruptly ceases. Further to this, those women who were later diagnosed with T2DM or dumb glucose tolerance described receiving no support, in comparison to the loftier level of support provided during pregnancy. This once again reinforces the message that the woman is of little importance, and her body is of no interest by carrying the baby.
Societal expectations of reproductive asceticism, as described, can lead to judgements and criticism. This is exacerbated in GDM, where women are stigmatised for their 'selection' to be overweight [21]. Research shows that there is general stigma confronting people with T2DM and those who are obese [42, 55]. When the 'public fetus' is seen to be affected by the adult female's individual choice, the stigma is intensified, which tin can lead to feelings of guilt, low and negative self-beliefs. This, coupled with the trauma of the GDM feel and little acknowledgment of the woman's private worth can only intensify the difficulties women face up addressing lifestyle choices for themselves subsequently birth. Therefore, in spite of being able to reach excellent clinical outcomes for the baby in the short term, the current UK model of GDM intendance (coupled with societal influences) may be at the cost of poor psychological and longer-term clinical outcomes for the woman, who may not re-appoint with addressing her futurity diabetes risk.
Many of the findings from this study are concordant with those from previous studies on women'due south experiences of GDM from a number of different countries. Nonetheless, this study adds to current research by providing an extended analysis of women's experiences in the context of the model of care, cartoon a possible link between the experiences of GDM and long term psychological and potentially clinical outcomes.
Translating women's experiences of GDM
In the final part of our assay nosotros integrated the themes into a collective model to hypothesise a potential relationship between women's intendance experiences and personal health outcomes. This model is presented schematically in Fig.1.
Relationship betwixt women'due south experiences and potential care outcomes
The model details how the themes nosotros have identified may translate into health outcomes. The women'south experiences can be damaging and the context of their experiences mean that women have niggling time to adapt to what is happening. They likewise have reduced personal autonomy and can lose cocky-belief and experience low self-efficacy as they struggle to fulfil all the demands placed on them. This struggle can impairment their relationship with and trust for their healthcare providers and lead to disengagement and abstention behaviours. Collectively these experiences seem to have an enduring outcome on the women'due south views of their ain health. This endurance may be related to the legacy of the emotional distress experienced and the lack of fourth dimension available for women to go through the stages of grief relating to their 'transient' disease state, all of which may exist problematic in the context of managing their own hereafter risks of diabetes.
In light of these observations, healthcare delivery may need to be reoriented to enhance the pregnancy experience and to help ensure women are more than engaged in their care and circumspect to their own health. Areas for consideration may include: identifying women at high take chances of GDM in early pregnancy and providing information, so that the diagnosis is less shocking; improved direction of the emotional consequences of a GDM diagnosis; a less judgemental and more motivational approach to enhance the women's cocky-efficacy and engagement in their intendance; consideration of the context of care to deliver a more 'normal' and positive experience of pregnancy, such that the women experience important and their needs are more cardinal; and improved postpartum follow-upwards so that women practice not feel neglected afterward the birth and are supported in attention to their ain ongoing health needs in the context of adjusting to motherhood. Nonetheless, it should be cautioned that any changes made would need to be counterbalanced confronting the fact that the current model results in practiced clinical pregnancy outcomes.
Report strengths and limitations
A major strength of our study is that while report participants were, as in all similar studies, self-selecting, the participants demographically matched the overall clinic population. This population is demographically diverse and participants represented a wide range of views and feelings. Another strength of our study compared to many similar studies is that nosotros offered participants the selection of an interview or a focus group, whereas many studies utilize only 1 methodology, thereby biasing participation based on women'south preferences. Information technology should be noted that at that place are some potential differences betwixt the results of phone and confront to face interviews, for instance telephone interviews are not able to benefit from visual cues so it may impact rapport [56], although this does not always bear upon findings [57]. It is possible that holding interviews on the hospital site too influenced participants' responses due to its proximity to the place the participant received their intendance.
It should be noted that the generalisability of our study may be express, as our participants were identified from a group of women attending one infirmary in southeast London, United kingdom. Therefore the findings may not be applicable to other population groups using different models of care. In addition, our sample was self-selecting, and therefore may not represent the views of the population studied. However, every bit stated above, our sample was representative of our population group in terms of ethnicity, postcode impecuniousness index, historic period and BMI. In addition, many of the themes elicited articulate social, cultural and psychological situations that are probable to be applicable in contexts exterior of the U.k., and indeed reflect findings from previous studies conducted in a variety of countries. This indicates that the issues discussed may be widespread.
Some other limitation implicit to qualitative studies is the possibility of researcher bias in interpretation. To mitigate this, three researchers were securely involved in the information analysis, two of whom independently coded every transcript and and then agreed codes and themes, with the third researcher moderating the process.
Conclusions
GDM is an emotionally distressing experience for many, although non all, women. While well-nigh women were grateful for the intensive support they received during pregnancy, the costs to their personal autonomy were high. Women described feeling valued solely as a means to produce a healthy infant, and felt chastised if they failed to adhere to the behaviours required to accomplish this. This sometimes had an enduring impact to the potential detriment of women's long-term psychological and physical health. Healthcare commitment may demand to be reoriented to ameliorate the pregnancy experience and help ensure women are engaged and attentive to their own health, peculiarly after birth, without compromising clinical pregnancy outcomes. Areas for consideration in GDM healthcare include: improved management of emotional responses to GDM; a more motivational approach; rethinking the medicalisation of intendance; and improved postpartum care.
Acknowledgements
We would like to acknowledge the participants who took function in the research for their contribution.
Funding
This report is independent research arising from a doctoral fellowship supported by the National Institute for Health Enquiry, United kingdom. The views expressed in this publication are those of the authors and non necessarily those of the Britain National Health Service, the National Found for Health Research or the Department of Health. The funding body had no office in the design of the study nor collection, assay, or interpretation of data, nor in writing the manuscript. The other authors are funded past King's College Hospital and King's College London.
Availability of data and materials
The datasets used and analysed during the electric current study are available from the corresponding writer on reasonable request.
Abbreviations
| (BMI) | Body mass index |
| (FGP) | Focus grouping participant |
| (GDM) | Gestational diabetes mellitus |
| (GTT) | Glucose tolerance test |
| (IP) | Interview participant |
| (Overnice) | National Institute for Health and Care Excellence |
| (T2DM) | Type 2 diabetes mellitus |
| (WHO) | Globe Health Organisation |
Additional file
Boosted file ane:(26K, docx)
This file is the topic guide used by the researchers for the interviews and focus groups. (DOCX 25 kb)
Authors' contributions
JP conceived the design, adult the topic guides, conducted the interviews and focus groups, analysed the information, drafted and finalised the manuscript. KS developed the topic guides, conducted the interviews and focus groups, analysed the data and drafted the manuscript. KI conceived the design and critically revised the manuscript. KH contributed to the design and critically revised the manuscript. HR contributed to the pattern and data acquisition, and critically revised the manuscript. AF conceived the design, analysed the data and critically revised the manuscript. All authors read and canonical the terminal manuscript.
Notes
Ethics approval and consent to participate
This study received ethical approval from NRES Committee South West - Exeter on 25th February 2015. The reference is thirteen/SW/0141. Consent to participate was obtained from all participants of the focus groups and interviews. Written consent was obtained from all participants other than those interviewed over the phone, from whom exact consent was obtained.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
Publisher's Notation
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Footnotes
Electronic supplementary material
The online version of this article (10.1186/s12884-018-1657-9) contains supplementary material, which is available to authorized users.
Contributor Information
Judith Parsons, Phone: +44 (0)7590 717262, Email: ku.ca.lck@snosrap.htiduj.
Katherine Sparrow, Email: ku.ca.lck@worraps.enirehtak.
Khalida Ismail, E-mail: ku.ca.lck@liamsi.2.adilahk.
Katharine Hunt, Email: ku.ca.lck@tnuh.f.enirahtak.
Helen Rogers, Electronic mail: x.shn@sregorneleh.
Angus Forbes, E-mail: ku.ca.lck@sebrof.sugna.
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