Pre-conception care for women with type 1 or type 2 diabetes: A mixed methods study exploring uptake of pre-conception care

Problematising ‘planned’/’unplanned’ pregnancy

Pregnancy planning is complex because the concept of ‘planning’ is hard to define. It is interesting to note that most of the published literature reviewed does not provide definitions of ‘planned’ and ‘unplanned’ pregnancy and these concepts were seldom problematised. Definitions used in different studies include planned/unplanned pregnancy, intended/unintended pregnancy and wanted/unwanted pregnancy. When definitions were given they varied across publications. For example, the work by Richmond,40 a phenomenological study of 11 white women with T1DM, is an exception and in this paper the author defines unplanned pregnancy as one in which women ‘had not intended having another child at this time and therefore their pregnancies were unplanned’. Only 3 out of the 18 publications reviewed sought to fully explore whether pregnancies could be categorised as planned or unplanned, or to problematise the relationship between this and low uptake of PCC among women with pre-existing diabetes mellitus. The three papers30,31,35 that problematised the concepts of planned/unplanned pregnancy showed how these concepts were not neat categories into which women’s motivations and behaviours could be organised.

In setting up their study (which included 85 women with pre-existing diabetes mellitus) and outlining their inclusion/exclusion criteria, Holing et al. 31 described planned/unplanned pregnancy as follows:

A planned pregnancy was defined as a pregnancy that was desired before conception and in which contraception was stopped or avoided for the purpose of becoming pregnant and in which the women stated that she attempted to achieve optimal blood glucose control before becoming pregnant.

Using this definition, their data revealed that 41% of pregnancies were planned and 59% unplanned. Of the women whose pregnancies were unplanned, 70% had not been using contraception reliably and most were happy to be pregnant. A further 10% revealed that they had in fact been hoping to get pregnant. These findings led the authors to suggest that there is no one factor that could account for the complexities of pregnancy planning in which life experiences and circumstances, together with personal motivations and stresses, come together to influence women’s behaviours. However, they argued that ‘a crucial factor may be a woman’s subconscious desire to be pregnant and that some unplanned pregnancies may not be unexpected.’31 The authors of this paper concluded by questioning the dichotomy between planned and unplanned pregnancy suggesting that, ‘some pregnancies may actually be “subplanned” ’. 31

Griffiths et al. 30 were also critical of the dichotomy between planned and unplanned pregnancy. In this study, 15 white women with T1DM were interviewed using semistructured interviews and topic guides to explore how women accounted for how they became pregnant. They argued that the terms ‘planned’ and ‘unplanned’ were often meaningless to women and rarely used by women themselves. Moreover, they stated that when they asked pregnant women specifically about these terms, the definitions given were conflicted and complex, suggesting that it is not helpful to use these categories to define pregnancy planning. For example, when the women in this study were asked about whether or not they had been using contraception before becoming pregnant, they spoke of forgetting to use contraception and some spoke of pregnancy as being a ‘surprise’:

So before you became pregnant with [daughter], were you using contraception?

Yes and no. Well, it was just where I’d get to the stage where I would keep forgetting to take my tablets or knew where the condoms were . . . We kept both, which . . . It’s easily done.

In conclusion, the authors argued that ‘the complex lived experiences of becoming pregnant [. . .] defy categorisation as planned or unplanned’ and that most pregnancies fall somewhere in between these categorisations.

Shawe41 also questioned the dichotomy between planned and unplanned pregnancy, and in the process of data collection and analysis concluded that a far more nuanced approach is required. Shawe’s mixed-methods study drew on questionnaire and interview data with 107 with T1DM and 32 women with T2DM, and the focus was on the prevention of unplanned pregnancy. Some of the women in the study, for example, spoke about an ‘unconscious desire’ to become pregnant:

The second and third, I wanted to get pregnant at some point but I did not plan as such. I think I thought if it happens then that’s ok – sort of an unconscious thing really.

Woman with T1DM, p. 25541

It is noteworthy that Holing et al. 31 also mentioned that women may have an ‘unconscious desire’ to achieve pregnancy.

Several of the women in Shawe’s study41 also spoke about pregnancy as something that ‘just happened’ and being within the context of not being able to discuss it openly with their partner or husband. For example, one woman with T1DM in this study said:

I didn’t mind if I did get pregnant but my husband wasn’t keen and we didn’t really talk about it and then it just happened.

p. 35241

Shawe41 concurred with other studies conducted in diabetic and general populations to conclude that there is a continuum of planning for pregnancy. She reflected on the utility of the dichotomy between planned/unplanned pregnancy and questioned whether or not the use of these terms may have been a limitation that obscured women’s true pregnancy intentions.

Moreover, Shawe41 argued that although understandings of planned and unplanned pregnancy may be clear to health professionals and in the context of health policy literature, this understanding is not shared by women. This incongruence between the views of women and those of health professionals was one of the major themes identified in Shawe’s work. 41

Focusing specifically on the perspectives of health professionals, there is some limited evidence to suggest that health professionals are not fully aware of the nuances concerning planned/unplanned pregnancy. The notion that most pregnancies are unplanned emerged as a major theme in the work of Mersereau et al. 35 This study investigated the concerns of health professionals (including physicians, mid-level practitioners and certified diabetes mellitus educators) who care for women with diabetes mellitus in pregnancy. The study included 53 health professionals who participated in six mixed focus groups. Some health professionals in this study thought that all of the pregnancies in their settings were unplanned and across all groups most of the practitioners said that < 10% of their patients with pre-existing diabetes mellitus discussed pregnancy planning with them.

The studies30,31,41 discussed above demonstrate that notions of pregnancy planning and the concept of planned/unplanned pregnancies are likely to be more nuanced than those expressed by the respondents in the study by Mersereau et al. 35 It is of note that most of the literature reviewed here fails to problematise the concept of planned/unplanned pregnancy and to address the incongruence in views between women with pre-existing diabetes mellitus and the professionals who provide their care. Problematising the concepts of ‘planned’/’unplanned’ pregnancy is significant because these are not terms that women used necessarily and there was no shared meaning among women or between women and health professionals.

The social significance of pregnancy

Pregnancy planning and defining what is ‘planned’ or ‘unplanned’ can be complex because pregnancy is socially significant. Eight out of the 13 published studies exploring the complexity of pregnancy planning remarked on the social significance of pregnancy within the context of women’s lives and on the relationship between this and the management of diabetes mellitus and PCC.

Holing et al. ,31 who set out to determine why women with diabetes mellitus generally do not plan their pregnancies, argued that the desire for motherhood is an integral part of women’s self-identity. This study, which included 85 women with pre-existing diabetes mellitus, noted that, of the 50 women with unplanned pregnancies, 70% said that they were very happy when discovering they were pregnant. It is not clear from the study how many women had T1DM or T2DM and how many women were white or non-white. When women were asked how they would have felt if they had been unable to have a baby, responses were emphatic stressing feelings of sadness and loss. One woman said that her ‘life would be empty. I would have been devastated. It was what I wanted more than anything in the world’. Another woman said that ‘[it w]ouldn’t make me feel like a woman. It’s what I was meant to do. It probably never would be OK’.

Commenting specifically on unplanned pregnancies, Holing et al. 31 suggest not only that unplanned pregnancies are not ‘unexpected’ but that ‘the situational and emotional factors associated with unplanned pregnancy are complex and deeply rooted’. 31

In the study by Griffiths et al. ,30 women also reported conflicted feelings about pregnancy. Although women’s accounts of becoming pregnant varied, some women struggled to reconcile their feelings of ambivalence about their pregnancy. When one of the study participants was asked about how she felt when she found out about her current pregnancy, she said:

I can’t remember. It was all sort of . . . to be perfectly honest with you I would not have had another child if it wasn’t for [son]. If it was down to me personally I wouldn’t have another one.

Later in the interview the woman added:

I think I should stress . . . because it sounded really bad, but this pregnancy . . . I do want as much as we wanted the first time but just for different reasons. It’s really hard to explain that without sounding like ‘I’m not really that bothered.’ You know, we really are.

This study further demonstrated that women’s feelings about pregnancy can be complicated.

For some women with pre-existing diabetes mellitus, pregnancy planning may be further complicated by complex feelings and ambivalence relating specifically to the experience of living with diabetes mellitus or to being pregnant with diabetes mellitus. In the study by McCorry et al. ,34 14 women with T1DM were interviewed about their attitudes to pregnancy and PCC-seeking. The ethnicity of the participant group was not reported. One of four emergent themes in relation to preconception planning was identified as the ‘emotional complexity of childbearing decisions’. 34 All of the women included in the study were anxious about childbearing and reported feelings of ambivalence. The authors stated that:

. . . the balancing of desire for children and fear of the complexities that pregnancy might bring led to increased ambivalence about the decision to have a family.

The views of two specific women were reported. One woman said:

I thought complications would be too much. It just sounded like it wasn’t worth the risk, either for myself or a new baby, of some sort of damage.

Another said:

It’s one thing me worrying about causing damage to myself, I can kind of deal with that cause it’s only me that’s going to reap the repercussions, but, you know, if I’m putting someone else at risk, it’s not worth potentially even higher risks.

As the authors concluded, what was especially interesting about these data was how ambivalence around childbearing had consequences for women’s reproductive behaviours, including whether or not they sought PCC.

Chuang et al. 27 also reported that pregnancy intention could be affected by feelings about living with diabetes mellitus and the impact of this on pregnancy. They argued:

. . . many [. . .] women with diabetes expressed increased ambivalence or decreased intent for future pregnancy because of the risks posed by their conditions.

They quoted one woman who expressed concern about her ability to care for a child while also feeling ‘burdened’ by having to take care of herself:

just getting up and dealing with diabetes for 35 years in a row is just exhausting and I just could not imagine having to get up in the morning and have somebody else to have to take care of on top of myself.

This study included 72 women with chronic conditions (diabetes mellitus, hypertension and obesity), of whom 16 had pre-existing diabetes mellitus, and it is mostly clear when findings related to the experiences of women with diabetes mellitus. The findings of the study are relevant because they show interesting similarities and differences between women with different conditions. Women with diabetes mellitus were particularly likely to have decreased intent for future pregnancy but were aware of the need for glycaemic control if they were thinking about planning a pregnancy.

The paper by Richmond40 focused on the significance of pregnancy and motherhood for women’s self-identity. This work, which attempted to show an ‘inner perspective on being diabetic and pregnant,’40 investigated how glycaemic control might relate to identity and social roles. The author argued that living with diabetes mellitus caused ‘dilemmas for both self and identity’,40 and they identified a range of identities, or social roles, that determined how women feel and behave in relation to pregnancy. These roles included ‘mother’, ‘compliant patient’, ‘diabetic’, ‘partner’, ‘rebel’ and ‘self’. Of particular relevance to the complexity of pregnancy planning and the social significance of pregnancy is the resentment reported by women who had been diagnosed with diabetes mellitus as children or teenagers. This resentment played a role in how far they were willing to comply with medical advice. One of the women was reported as saying:

I had a pretty wild life . . . but em looking back there was a couple of times due to . . . excess alcohol intake, I’d say that I could have died . . . It was stupid to do that if you’re not diabetic, but being diabetic, it was incredibly stupid . . .

Although the author was not able to draw conclusions about different sorts of identity types, it is of interest because it highlights the importance of the relationship between identity and compliance with health-care regimens, specifically in relation to diabetes mellitus in pregnancy.

The literature discussed so far demonstrates that the emotional complexities surrounding pregnancy and ambivalence regarding living with diabetes mellitus in pregnancy can mean that women with pre-existing diabetes mellitus feel conflicted about pregnancy planning. The literature shows that these feelings can be further compounded by social and cultural norms that determine when it is considered to be the ‘right time’ to become pregnant and become a mother.

In Shawe’s41 doctoral work, she described how some (particularly younger) women felt about being offered unsolicited advice on PCC. Women remembered advice being offered but felt that it was not relevant to them at the time because they felt they were ‘too young’ to have a baby. One woman with T1DM recalled the following:

Oh – I think they might have said come back if you ever decide that is what you want to do sort of thing [get pregnant].

p. 22441

A woman with T2DM said:

Well nothing much – when I told her I was getting married, did say to talk to her if I wanted to get pregnant as there could be complications but that’s all really.

p. 22441

Neither of these young women felt that pregnancy was relevant to their circumstances at the time and, therefore, did not need to discuss the issue with a health professional.

In the study by Griffiths et al. ,30 the research participants also discussed ideas about when was the ‘right time’ for them to become pregnant. Like the women in Shawe’s41 work, one woman in the study described herself as being ‘too young’:

I was hoping to get pregnant later in life because we were still young, but I don’t regret it now . . .

The women in the study also discussed ambivalent feelings about becoming pregnant and whether or not they were ‘ready’ to be a mother:

We were trying to save up some money [for a holiday] [. . .] which I was looking forward to until I found out I was pregnant with my first child [. . .] I wasn’t quite sure if I was ready to be a mother, but now I’m a mum I’m pleased . . .

Women also discussed ideas about pregnancy and pregnancy planning within the context of their own experiences of family size and what they thought was most desirable, for example:

Well baby number three was a bit of a surprise. I said that I would very much like to have three children because I am one of three, my husband is one of two and once we had a boy and a girl he was quite happy . . .

The literature suggests that some women may also feel pressure to conform to external pressures regarding the social or cultural ideals about the right time to have a baby. This feeling was expressed by two of the women in the study by Lavender et al. 33 This was one of the few studies to include women of non-white origin and specifically included 22 women with T1DM and T2DM of white and South-East Asian origin. One Asian woman who accessed PCC reported feeling ‘pressure from outside’ to have a baby. She said:

. . . in our culture, once you’re married, it’s babies, you know and I’ve been married for three years now and it’s all been expected. I mean it’s three years [. . .] too late now [. . .] I mean, why is she not having kids?

The article also reported that another woman of South-East Asian origin wanted to conceive a male infant despite being told that pregnancy was a risk to herself and given medical advice not to get pregnant. The authors concluded that:

Preconception services should include recognition of socio-cultural differences and be sensitive to women’s desires to have an infant as well as optimising diabetes well-being.

The article by Spence et al. 42 showed that ideas about when it is the ‘right time’ to have a baby are also shared and expressed by the health professionals who provided care to women with diabetes mellitus. This study focused on exploring the knowledge and attitudes of 24 women with T1DM and T2DM towards PCC. Drawing on data generated via focus groups, the authors noted that women were more likely to be asked about planning for pregnancy if they were engaged or married, arguing that this ‘confirmed preconceived ideas and social stereotypes held by their health professional’. 42 The data reported in the study suggest that some women were able to challenge these preconceived ideas, for example:

The second they spotted an engagement ring, they said ‘Are you planning a pregnancy?’! Well, maybe I would have had one before I was engaged. Like I’m 27, so . . . just because there’s an engagement ring on my finger doesn’t mean all of a sudden I’m going to have a baby!

Ideas about the ‘right time’ to have a baby and become a mother were felt keenly by women. They articulated these ideas within the context of their own lives, experiences and circumstances. They also reported feeling the pressure of the cultural and social norms held by family and community, as well as by health professionals. Together with feelings of general ambivalence and conflicted feelings about diabetes mellitus in pregnancy, the literature highlights the complexity of pregnancy planning and the relationship between this and PCC.

Understanding fertility beliefs

Fertility beliefs, which can be defined as lay understandings of pregnancy and childbearing, are also important in determining women’s relationship to pregnancy and PCC. Given the social significance attributed to pregnancy and motherhood that was reported in the literature, it is not surprising that many women regard conception and pregnancy as a unique part of a woman’s life and subject to particular ways of knowing and understanding. Five out of the 13 studies that discussed the complexity of pregnancy planning explored the importance of fertility beliefs.

Two out of the five studies that discussed the importance of fertility beliefs explored the idea of pregnancy as a private experience, rather than a public one. For example, in one study,33 women who were aware of the availability of PCC were often reluctant to attend because they wanted the pregnancy to remain a private matter. The authors stated that this was either because women did not want the inconvenience of taking time off work and having to provide an explanation for absence, or because they had not enjoyed the experience on a previous occasion. One of the respondents in this study said:

It’s such a private thing, isn’t it? . . . just to attend a clinic you have to tell work where you’re going . . . you think I’ve got to tell a few white lies because I don’t want them to know that we’re trying [to conceive] and things like that.

In another study,41 the author reported similar findings. She argued that some women felt that trying for a baby was a private, intimate issue and not one to be discussed within a medical environment such as a hospital.

For some of the women in this study, pregnancy was not just a private issue but also a magical experience. One woman said that pregnancy planning, ‘. . . takes the magic away’. 41 The author suggested that such women had ‘romantic notions’ of becoming pregnant that were in contrast to more clinical views of pregnancy planning and PCC. Pregnancy planning and discussing conception was also thought to ‘spoil’, or even harm, the experience of getting pregnant. Another woman in this study said:

We’d always said that we’d like to get pregnant without really trying, so luck was with us . . . I think it can spoil things and if you are always thinking about it and worry that it won’t happen.

p. 26141

In the study by Chuang et al. ,27 slightly different fertility beliefs were expressed. Here women expressed the belief that planning a pregnancy was not really within their control. One of the women in this study compared planning a pregnancy to being able to control the weather:

So I mean yes, I would have loved to have planned it, but you know for me it would have been like trying to plan the rain . . .

Another woman also expressed some scepticism about the ability to plan:

I’m kind of already being a little more attentive to trying to check my sugars more often so that I can keep my A1C [glycated haemoglobin] lower. I mean you know it is like we may have our plans, but we all know how that goes . . .

Some women in the study by Chaung et al. 27 also made reference to fate and to religious beliefs, including reference to God and the divine.

Another significant aspect of women’s fertility beliefs relates to the view that women with pre-existing diabetes mellitus will find it difficult, if not impossible, to get pregnant, or that achieving conception will take longer than it would otherwise. This view was reported in three of the published studies in this systematic review. 31,37,41

Murphy et al. 37 explored the views of 29 women who did not attend PCC; 21 of these women had T1DM and eight had T2DM. Drawing on data from semistructured interviews, the findings of this study revealed that one-third of the women believed that they would not get pregnant because they either had high blood glucose levels or perceived fertility issues. Three of the women described how they became pregnant when their glycaemic control improved, and two of these are reported here. One woman said:

Because I didn’t ever think that I would be able to have children. I just thought that that was a lot harder to conceive with having diabetes.

Another said:

You can’t, apparently so, really conceive when you’ve got high blood sugars . . . Your body’s just not able to function properly and . . . I don’t know the reason for it really . . . and then my sugars came down and I did get pregnant.

In the study by Holing et al. 31 a similar picture is reported. Nearly half of the women with unplanned pregnancies who did not use contraception believed that they were unable to become pregnant. Various reasons were reported for this, including being told that their partner was sterile, believing that diabetes mellitus made it more difficult to conceive and believing that they could not conceive because they had not become pregnant on prior occasions when not using contraception. The authors report that none of these women had undergone a fertility evaluation or received a medical diagnosis to confirm infertility. Although this study reported descriptive data, no descriptive data were given for this theme.

In Shawe’s41 study, women with T1DM also talked about how difficult it could be to become pregnant with poor glycaemic control. Here women also mentioned the relationship between high blood glucoses and pregnancy loss. For example:

I think it is harder to get pregnant and stay pregnant if you have bad sugars.

p. 25241

However, not all of the women shared these fertility beliefs. Some women did not think that diabetes mellitus affected fertility or had not given it any thought at all. One woman with T1DM was not aware of any problems:

No – I had no trouble getting pregnant.

p. 252

A woman with T2DM and another with T1DM had not considered the relationship between diabetes mellitus and (in)fertility:

Oh can it – I hadn’t thought about that?

No I had never got round to thinking about that as they were all unplanned.

p. 252

In her study, Shawe41 also spoke with health professionals. These interviews revealed that some were aware of women’s fertility beliefs and that it was important to address this when giving advice:

. . . some of them may think that it’s more difficult when they’ve got diabetes, but it isn’t and for me it’s important to let them know that it’s just as easy for them to get pregnant but also much more risky for the baby . . .

p. 25241

The published literature reviewed here indicates that fertility beliefs may be important in relation to uptake of PCC for three main reasons. First, pregnancy is sometimes regarded as something that is private, special and unique and not something necessarily to be discussed publicly; this may influence the likelihood that women will wish to discuss pregnancy planning with a health professional. Second, romantic notions of pregnancy, in which getting pregnant is seen to be the work of fate, luck or the divine, can also influence whether or not women consider pregnancy planning because getting pregnant is regarded as something outside their locus of control. Third, beliefs about how difficult it can be to get pregnant when living with diabetes mellitus also seem relevant and might mean that women are less rigorous in taking contraceptive precautions or less likely to raise the topic with health professionals for fear that the discussion will be futile.

Knowledge about contraception

Fertility beliefs can strongly influence contraceptive use. Contraception is an important part of managing fertility and pregnancy planning but the literature indicated that women’s knowledge about contraception varied. Out of the 14 studies that discussed knowledge of pregnancy planning, diabetes mellitus and risk, five papers explored knowledge about contraception.

Three studies27,37,41 explored women’s knowledge and understanding of birth control options. One group of authors argued that regardless of parity, the women included in their study were often unaware that their birth control options might potentially be limited by their condition. 37 When women were asked about whether or not they thought certain types of birth control might be less safe for them, they responded either that there were no safety issues or that they had not considered it. The authors of this study made an interesting point here but no descriptive data from women with pre-existing diabetes mellitus were presented to support their assertion.

In contrast to this, the other two studies27,41 reported that some of their participants were aware that certain birth control options might be contraindicated. Four of the women in the study by Murphy et al. ,37 which included women with T1DM and T2DM, said that they believed they were not able to take the contraceptive pill because of their condition. In two of these cases, the women had experienced miscarriage, and one woman reported a recurrent history of serious adverse outcomes. One of the women in this study stated:

Well, em, initially, when I was first diabetic I was told that I couldn’t take the pill anymore because it was . . . the risk factors were too high.

While another said:

Well my doctor didn’t give me the pill . . . No, ‘cos I’ve got diabetes and you know, I’m not the most em, the best diabetic I think. I’ve had it such a long time so, I don’t look after myself the way a lot of people do.

Shawe41 also reported that some of the women in her study felt restricted in their choice of birth control. One of the women interviewed with T1DM was clear that she had been told by her GP that she would not be allowed to use hormonal methods of contraception because of her diabetes mellitus. She felt that this severely restricted her choice of contraception and subsequently relied on barrier methods only.

There were several other comments in Shawe’s questionnaire that supported the notion that women with pre-existing diabetes mellitus may feel restricted in their choice of contraception. It is not clear from the study whether these women had T1DM or T2DM.

Some of the women in the study by Murphy et al. 37 also spoke of the side effects associated with the use of hormonal contraceptives, such as mood disturbances, dysfunctional bleeding and amenorrhoea, and this meant that women discontinued using these forms of birth control. The authors conclude that women had:

. . . difficulties complying with contraceptive advice, with 70 per cent [of the women in their study] not taking reliable effective contraception prior to becoming pregnant.

The fact that women with diabetes mellitus might feel restricted in their choice of birth control and less likely to use hormonal methods of contraception was further reinforced by some of the interviews with health professionals. 41 Shawe41 argued that health professionals are often aware that women believe that they cannot take hormones. Health professionals who worked in secondary care settings felt that GPs are often reluctant to prescribe hormonal contraception to women with pre-existing diabetes mellitus even when that approach might not be necessary.

The view of not prescribing hormonal methods of contraception to women with diabetes mellitus was seen as ‘old-fashioned’ or out of date by several other respondents too.

Although these professionals acknowledged that advancements in medication and hormonal contraceptives means that women with pre-existing diabetes mellitus can be prescribed hormonal contraception, the data reported by three studies27,37,41 highlighted that women feel restricted in their choices of birth control. The impact of this real and perceived restriction may have an effect on women’s contraceptive decisions.

The more realistic risk of other medications interacting with contraception and reducing its efficacy was also discussed in two of the studies reviewed37,41 and mentioned by McCorry et al. ,34 who argued that ‘. . . another barrier to preconception care arises when a woman does not use contraception effectively’.

In the study by Murphy et al. ,37 three of the women with unplanned pregnancies denied problems with compliance and argued that contraceptive failure and/or interactions with medications had caused them to become pregnant. In the same study, four women with T2DM described the unanticipated effects of medications and/or weight loss on their fertility. For example:

It was antibiotics that got in the way of the pill and that’s what happened.

I was on the contraceptive pill . . . Yep and, but I was also taking em, oh what was it called, Reductil . . . I was still taking the [Reductil] tablets and metformin the day I got pregnant.

In Shawe’s41 study, interactions between latex-based barrier methods of contraception (such as latex condoms or the latex diaphragm) and vulvo-vaginal medications were discussed, the latter having a weakening effect on the latex, therefore reducing efficacy. Shawe41 pointed out that women with diabetes mellitus with high glucose levels are more vulnerable to candida infection and that antifungal treatments could interact with latex.

However, when women were asked whether they had received any information about latex condom use and the use of antifungal medication, none of them said that they had been given information by their GP, a health professional, or pharmacist and did not know about the potential interaction and reduction in contraceptive efficacy.

Murphy et al. 37 also noted that several of the women with T2DM in their study had been prescribed medications [e.g. metformin hydrochloride or rosiglitazone (Avandia^®, GlaxoSmithKline, Brentford, UK)] that are known to enhance ovulatory function. Women did not indicate any awareness that increased contraceptive vigilance would be needed to prevent an unplanned pregnancy. As one woman in the study commented:

I went on to insulin and I was on insulin for a year or 2 trying to have a baby and they said they didn’t think I could . . . then . . . they put me on a tablet [rosiglitazone] and 7 years later I’m pregnant . . .

Although this study included women of white British and Asian backgrounds, this is not reported clearly with respect to the descriptive data presented.

Regardless of what women might know or recall about contraception and diabetes mellitus, the significance of family, culture and relationships in contraceptive use was highlighted by two of the five studies that explored contraceptive knowledge. In the study by Murphy et al. ,37 which included women with T1DM and T2DM and women of white British and Asian origin, three out of the six Asian women respondents discussed the importance of their religious beliefs and/or their husbands’ views on contraception. One husband described encouraging the use of contraception:

We’re not allowed to use anything like that but we’re not strictly you know . . . sticking to religion. We do use it ‘cos . . . we’re not that religious.

In contrast, one of the women described being discouraged to use contraception by her husband:

Yes I was given information by my GP’s nurse, but I did not use contraception . . . My husband said, do not use any contraception we want a baby.

The same study37 highlighted that some women did not take contraception rigorously, despite knowing that they should, but that this was influenced by personal and/or relationship difficulties. One of the women said:

It was a lot to do with the relationship I was in as well, sort of like breaking up with him and I was . . . ’I can’t be bothered any more to do that’.

While another said:

I’d a bit of a bad patch for a couple of months and, you know blood sugar levels went up a bit, down a bit and hence me pill as well. Wasn’t takin’ it as regular as I should have done.

Slightly different accounts of how relationships could influence contraceptive use were given by women in the study by Shawe. 41 In this study, women discussed the fact that husbands were not always very ‘keen’ on having babies so contraception was not necessarily something that was talked about openly. Contraceptive use might be stopped but planning a pregnancy was not discussed. One woman in the study with T1DM said:

I didn’t mind if I did get pregnant but my husband wasn’t keen and we didn’t really talk about it and then it just happened.

p. 25641

Given that many women with pre-existing diabetes mellitus have ‘unplanned’ pregnancies, it is important to understand women’s knowledge about contraception. Three key issues can be determined from this systematic review about women’s knowledge and are discussed in Knowledge about risk factors and lifestyle.

Knowledge about risk factors and lifestyle

The studies reviewed show that women could be knowledgeable about the risks of pregnancy in diabetes mellitus and aware of the range of modifiable lifestyle changes that might be of benefit. However, knowledge was variable and not always very specific. Of the 14 studies concerned with knowledge and understanding of pregnancy planning, diabetes mellitus and risk, 12 discussed knowledge of risk factors and/or lifestyle in particular.

O’Higgins et al. 38 drew on the findings of a participative research project to argue that lack of knowledge may be key to understanding why women do not use PCC. In this study, a participative research method called the ‘participative research process’ was used to facilitate 14 women with pre-existing diabetes mellitus to create ‘webs of ideas’ on the reasons for attending or not attending a specific prepregnancy care programme. The research included 10 women with T1DM and four women with T2DM, some of whom had attended PCC services and some of whom had not. All of the women were white and Irish. The authors suggested that a ‘[l]ack of understanding of the risks of poorly controlled diabetes on pregnancy outcome was considered crucial for those not attending’. 38

With respect to this, one of the women in their study said:

Mothers unaware of the effect diabetes has on babies’ growth.

And another said:

Lack of awareness of risk of real complications – may not want to know and afraid to find out how bad it could be for baby.

In two of the studies reviewed,27,42 nulliparous women, in particular, were seen to lack knowledge about the risks of diabetes mellitus in pregnancy.

In one study,42 which included both women with T1DM and those with T2DM, it was argued that nulliparous women did not realise the ‘full extent’ of pregnancy-related risks unless they specifically sought out advice on this. One of the women in this study (with T1DM) described the moment when she was told that her baby would not survive but said that she had not been aware of the risks involved:

I got a scan and I was told the baby’s not going to survive – multiple abnormalities . . . I later found out, through my own research, that this was due to high blood sugars in early pregnancy. It’s . . . I never knew those sorts of things could happen.

Another woman, also with T1DM, said that she was aware of the need to plan a pregnancy but did not understand why:

The thing they most wanted to tell me about at this age [20 years] was to use some form of contraception, because you don’t want to get pregnant without it being planned . . . but they don’t say why it needs to be planned.

In another study,27 a similar pattern was found, although descriptive data were not presented for this specific claim. Of the 16 women with pre-existing diabetes mellitus included in this study (out of 72 women with a range of chronic conditions), nulliparous women were less knowledgeable about the risks of diabetes mellitus in pregnancy than parous women. Nulliparous women, they argued, were generally aware of increased pregnancy-related risks, but were unaware of the specific risks to mother and baby. In contrast, parous women were aware that they might have larger babies and that their babies could have blood glucose abnormalities. In addition, parous women were aware of the teratogenic effects of diabetes mellitus medication in pregnancy. One parous woman mentioned the risk of fetal cardiac complications but none of the women mentioned other risks of fetal abnormality.

Of the five published studies reviewed that explore the perspectives of health professionals, only Mersereau et al. 35 commented on the issue of knowledge of risks. However, when practitioners were asked about the barriers women might face when managing diabetes mellitus in pregnancy, they grouped their perceptions about barriers into three main categories, one of which was a ‘lack of knowledge and awareness’. However, in contrast to the work of Spence et al. 42 and Chuang et al. ,27 who focused on the knowledge of nulliparous and parous women, Mersereau et al. 35 argued that women with T2DM are the least knowledgeable about the risks of diabetes mellitus in pregnancy. One practitioner was quoted as saying:

The type 2s especially . . . haven’t been educated on the importance of getting their blood sugars in control prior to getting pregnant and getting prenatal care started.

Regardless of parity and type of diabetes mellitus, two further studies33,34 attributed this lack of knowledge to a deficiency in the information being provided to women by health professionals. One study33 argued that a lack of knowledge could contribute to a general apathy towards PCC because women did not understand how important it could be to them. The authors stated:

The general apathy towards preconception care was influenced by a lack of information and/or a lack of emphasis from professionals on the importance of attendance.

When asked about what they knew and what information they had received, one woman in this study said:

When I came, we just had vague chats about it to be honest.

And another woman said:

I didn’t know things like that existed . . . I didn’t know anything like that, you know was available to you and I wouldn’t have even of known who to ask or where to go or . . . I wouldn’t have had a clue.

In another study,34 10 out of the 14 women with T1DM interviewed said that they had limited knowledge of diabetes mellitus in pregnancy. The women attributed this lack of knowledge to a lack of information and, moreover, talked about the anxiety and fear that this engendered. Two of the women in this study said:

. . . but I have a fear, I suppose I need to weigh things up. It’s just like the unknown . . . you need information, so that you can make the decision in your own way, ‘cos everybody’s different. I’d be scared of the unknown.

They don’t give you any information about pregnancy or anything, you know. If your overall control’s good, and that’s really just it . . . at least if people actually know what those risks were before they planned the pregnancy rather than it all being a little bit woolly.

In this study, the authors highlighted that anxiety and fear could be attributed to a lack of detailed knowledge about diabetes mellitus in pregnancy and what the specific risks might be. Many of the studies reviewed explored women’s fears and anxieties in more detail. In the nine studies26,28,30,32–35,38,40 that explored this, women’s concerns could be categories into three main areas: (1) concerns for themselves, (2) concerns for an unborn child and (3) concerns for existing children. The literature suggested that some women were concerned about one, two or all three of these issues.

Five studies discussed the specific issue of women’s concerns for themselves. Richmond40 noted that women were concerned by a range of issues, including frequency of blood testing, the need to constantly juggle insulin doses, nausea and vomiting, and the risk of hypoglycaemia. In the study by Berg and Sparud-Lundin,26 one woman was so fearful of hypoglycaemia that she feared dying:

And sometimes in the evenings I was like . . . I don’t know if I dare go to bed, what if I die in my sleep and my husband doesn’t notice anything? That really gives you a lot of anxiety, you don’t know how you’re going to survive.

All of the women in this study had T1DM and the authors of the study set out to explore the need for, and experiences of, professional support during pregnancy and childbirth. Data were generated via focus groups and interviews. Reporting on the views of health professionals, Mersereau et al. 35 argued that health professionals are aware of women’s dislike of blood testing and use of insulin. One of the health professionals included in this study said that ‘They’re more concerned about are they going to have to take insulin . . . They don’t want to check their sugars’.

The respondents in this study also stated that women were often concerned about childbearing. One health professional said ‘Another thing that I frequently hear is, ‘Am I going to have to have a C-section [caesarean section]?’.

This was also identified in the work of Lavender et al. 33 but this time it was a concern voiced by the women themselves. Of the 22 white British and South-East Asian women with T1DM or T2DM included in this study, all but one assumed that they would have to have a caesarean delivery. However, none of the women seemed to have had the opportunity to discuss choice of birth method. One respondent in this study said:

. . . someone’s briefly mentioned that I’ll probably have it a couple of weeks early. I’m surmising I’ll have a caesarean then [laughs] I can’t surmise anything else. Erm, but nobody has really gone into details with that.

It is interesting to note that the Asian women in this study were more afraid than the white British women of having a caesarean delivery. One woman said ‘I am scared of having an operation; everything is different here than India’.

In the study by McCorry et al. ,34 all of the respondents were generally anxious about childbearing, with the most frequently cited risk being ‘having a large newborn’.

In seven28,32–35,38,40 of the studies, discussion focused on women’s specific anxieties and concerns about the health of their unborn fetus or future baby. Based on their study of health-care practitioners, Mersereau et al. 35 stated that the concerns practitioners hear from women are generally focused on the health of their unborn baby. One health-care practitioner said:

Is the baby going to be safe because of the diabetes? They just have that overall fear. They’re concerned, they’re worried, and they want [baby] to be safe, but they can’t articulate what safe is.

The literature that focused on women’s own views supported the idea that many women were generally concerned about having a healthy baby. This was reported in three studies. 28,32,40 King and Wellard32 conducted seven in-depth interviews with women with T1DM living in rural Australia. They stated that:

. . . women reported being motivated to be as healthy as possible and ensure the best outcomes for their baby. The focus was on having a healthy baby.

Another study28 concurred with these findings, arguing that a desire for a healthy baby is ‘a powerful motivating factor’. 28 One of the women in this study described how she was motivated by this during pregnancy:

I had to shoot myself with a needle and prick my finger all day. I hated it, hated every minute of it. If my child did not depend on me taking this needle and insulin every day, I would not have done it.

Concern for the well-being of their babies caused women considerable stress and anxiety. The literature suggests that, although a general feeling of anxiety persists, some women are able to articulate more specific worries and concerns, demonstrating more knowledge of the risks of diabetes mellitus in pregnancy. According to King and Wellard,32 women in their study expressed concern about their baby being born with an abnormality, dying in utero or being sick and needing medical care after birth. This was supported by another study34 that also cited malformations and stillbirth as two major concerns for women. O’Higgins et al. 38 also point out that the participants in their study knew that ‘the health of the mother and glucose control were crucial for a safe pregnancy and a healthy baby free from congenital malformations’. One woman said that it was important to ‘get their HbA_1c [glycated haemoglobin] good, and have a tighter control for the health of their baby’.

The subject of malformations was also explored in the study by Lavender et al. 33 In this study, which included white British women and women of South-East Asian origin, South-East Asian women were so concerned about the issue of congenital malformation that they were unable to think about the forthcoming birth of their babies. One South-East Asian woman said:

Is my child gonna be all right, when I give birth to it? Is it gonna have all its limbs? It’s just the thought, it just makes you scared and I just think if I stay pregnant it’s alright . . . I won’t be able to see it . . .

The same study also highlighted that women were concerned about the risk of stillbirth and the death of their baby in utero. 33 The authors reported that women used language that reflected their detachment from their infants, indicative of their uncertainty. Highlighting this point, one of the white British women in this study said:

. . . it’s more miscarriage, it’s more stillbirth . . . I’m frightened you just have to wait and see if something really horrible happens to it [baby] but you just do your best to try and make sure that it doesn’t.

Although most of the studies reported that women were concerned about the risks to themselves and to their unborn children, two of the studies identified women’s concerns for existing children. 34,40 In one of these studies,34 a woman reflected on her concerns in relation to her son:

It just sounded like it wasn’t worth the risk, either for myself or a new baby, of some sort of damage. And we had 1 healthy son, and it wasn’t going to be fair on him if we had something else along that wasn’t just as healthy.

In the context of the risk of diabetes mellitus in pregnancy, many of the studies explored the issue of lifestyle change. Women were often asked what lifestyle changes they had made in preparation for pregnancy or what lifestyle choices they thought might be important in preparation for another pregnancy. Eight26–28,30,32,41–43 of the publications reviewed discussed women’s knowledge of lifestyle change.

In almost all of the studies (n = 7), women seemed aware of the need to address blood glucose levels prior to pregnancy. 26–28,30–32,41 It was an issue about which most women were aware and on which most women had either received or sought information. For example, one of the women with T1DM in Shawe’s41 study described how she carefully monitored her blood glucose levels before becoming pregnant.

Some of the women in Shawe’s study41 sought advice from health professionals whereas others had not. The women in the study by King and Wellard32 also sought to control their blood glucose levels before pregnancy and the authors reported very high levels of motivation among women. Some women monitored their blood glucose levels with the support of a health professional, whereas others did not. One of the participants in this study said:

It took 2 years of planning and preparation before my HbA_1c level was satisfactory. The specialist said after a year that I could go ahead but just from my own research, I didn’t like the margins that I had. It was too close for me.

Another study26 reported similar findings, arguing that:

The women had to different degrees, before and during pregnancy, been prepared by the care providers for the need to achieve normoglycaemia.

One woman from this same study described how she carefully prepared for pregnancy even though she did not normally take such good care of herself:

I was very careful about that when we were planning to get pregnant. And then I felt great during the entire pregnancy and was really careful about my glucose levels, which I’m not always otherwise.

The importance of taking folic acid supplementation was also highlighted by several studies. 27,30 Shawe41 also commented on this. When asking women about what changes they may have made in promotion of a healthy pregnancy, some talked about folic acid.

However, the author noted that, although women might be generally aware of the need for folic acid supplementation, they may not be aware that over-the-counter folic acid may not provide them with the levels required by women with pre-existing diabetes mellitus and available on prescription in the UK.

Changes to diet and exercise and reduced alcohol and cigarette consumption were also discussed in the published literature. As noted above, King and Wellard32 reported that the women in their study possessed high levels of motivation to achieve a healthy baby; this meant that women were willing to be ‘strict’ with their diet and lifestyle, as well as with their blood glucose levels. Chaung et al. 27 also highlighted that, regardless of pregnancy experience, women felt that lifestyle changes were important and considered smoking cessation and moderation of alcohol to be part of pregnancy planning. Collier et al. 28 also stated that the women in their study were ‘. . . following the diet and exercise recommendations that they received in their previous pregnancy’.

However, it was not clear if this assertion applied to women with all types of diabetes mellitus as no descriptive data were presented for women with pre-existing diabetes mellitus. Spence et al. 42 suggested that women with T2DM are more likely than those with T1DM to focus on the importance of diet and lifestyle changes. In another study,43 women recognised the importance of lifestyle for a healthy baby only in retrospect. The aims of this study were to explore women’s perceptions and experiences of being pregnant; the findings drew on a purposive sample of seven women with T1DM in their first pregnancy. Women sometimes described themselves as ‘lazy’ and needing to ‘get off their backside’:

. . . It’s just laziness and . . . it wasn’t that I couldn’t be bothered, it was I’ll behave me’self tomorrow, I’ll get on top of it next week an’ there’s always been an excuse . . . It took getting pregnant for me to do this . . . to get me off my backside . . .

However, Woolley et al. 43 argued that women felt that the lifestyle changes they had managed to make during pregnancy were likely to continue and go on to improve their health in the longer term.

Knowledge about the risks of diabetes mellitus in pregnancy emerged as an important subtheme that helped explain women’s views and experiences of pregnancy planning. The findings of the studies reviewed shows that knowledge varied considerably and some women had a general awareness of the risks involved but were lacking in specificity. The risks of diabetes mellitus in pregnancy caused women considerable worry. Anxieties were centred around concerns for their own well-being, including concerns about childbirth, concerns for their unborn child or future baby and concerns for existing children.

Knowledge about preconception care

Knowledge about PCC is also an important subtheme and was addressed in 10 of the studies. The literature focused on whether or not women were aware of the existence of PCC services and, if they were, the circumstances under which women were most or least likely to use those services.

Some women may not attend PCC simply because they do not know about it. Three of the studies included in this systematic review came to this conclusion. 33,38,41 The first study38 asked women about non-attendance at a specific pregnancy preparation programme and found that a lack of awareness of its existence was a major factor. However, they noted that prior positive experiences meant that they were more likely to attend in the future. In the second study,37 three of the women they interviewed were completely unaware of the existence of PCC. The third study33 also supports this conclusion. One of the white British women interviewed in this third study said:

Erm, but I didn’t know things like that existed . . . I didn’t know anything like that, you know was available to you and I wouldn’t have even of known who to ask or where to go or . . . I wouldn’t have had a clue.

According to the authors, South-East Asian women were even less likely than white British women to know about the existence of preconception. 33

Shawe41 argued that, from the point of view of health professionals, pregnancy planning equated with PCC but that for many women this was simply not the case. That is, Shawe argued that there was an incongruence between women’s definition of pregnancy planning and the definitions expressed by health professionals or found in health policy documents. This was exemplified by the fact that, although some women did not attend PCC because they were not aware of it, other women were aware of PCC but did not avail themselves of it. An analysis of the four studies28,30,34,37 that explored this issue showed that this was either because women did not think it was relevant or important to them or because they already considered themselves to be knowledgeable on the subject of pregnancy planning. In the study by Collier et al. ,28 very few women thought that attendance at PCC was a strategy for having a healthy pregnancy. Likewise, in the study by McCorry et al. 34 a similar pattern was found. They referred to the example of one woman who had experienced a previous pregnancy complicated by diabetes mellitus but who still failed to see that PCC might be useful or relevant. The woman said:

I don’t really know why I would speak to my doctor before getting pregnant. I would definitely go to see her if I knew I was definitely pregnant. I don’t really know if I’d plan ahead. I can’t really say that definitely I would do things differently.

Other women may not attend PCC because they already consider themselves to have the appropriate expertise. Some of the women who participated in the study carried out by Griffiths et al. 30 made this point. They felt that, as they were already proficient in managing their own diabetes mellitus, they needed no additional advice on preparation for pregnancy. When women were asked about how they had informed themselves they spoke about finding information on diabetes mellitus in pregnancy online and via internet discussion forums. This was especially true if women had already had a previous successful pregnancy. The impact of a previous successful pregnancy was also noted by another study. 37 In this study, women with prior successful experiences described how they thought it was best if they ‘just got on with it’. One woman said ‘We think we know how to have babies and before we didn’t, so . . . last time we sought a lot of advice and this time we’ve just gone and got on with ourselves’.

Prior successful experiences of pregnancy are clearly relevant to knowledge about PCC. So, too, are experiences of pregnancy loss and/or other complications of diabetes mellitus in pregnancy; five33,34,37,40,41 of the published studies in this review explored this issue.

In the study by Murphy et al. ,37 it was reported that, of the 14 women who had been pregnant before, 12 reported one or more complications ranging from major complications such as miscarriage and stillbirth through to minor complications such as the baby being born with shoulder dystocia. What was particularly interesting about this was that, as the authors argued that ‘. . . women did not necessarily attribute these previous complications or poor outcomes to lack of PPC [prepregnacy care] and it did not seem to prompt them to seek PPC for subsequent pregnancies’.

One of the women in the study37 said that it prompted her to seek PCC in subsequent pregnancies:

The first time round I had actually had two miscarriages previously, probably that’s why I went [for pre-pregnancy care]. Yeah I had a miscarriage after my daughter as well . . . but I didn’t, I didn’t actually know that I would get pregnant so quick.

In the study by Richmond,40 two of the women interviewed who had lost babies in previous pregnancies said that this motivated them to seek PCC:

I went and got help before I got pregnant because me blood sugars were going up before I got pregnant . . . Me HbA_1cs have been absolutely fantastic. Me last five have been like 6.1 and 6.0 and I’ve been jumping for joy!

Yeah we decided we would try for another one . . . made sure my blood sugars were good before I started . . .

Two further studies33,41 also supported the idea that women with pre-existing diabetes mellitus who have experienced previous pregnancy loss are more likely to be aware of PCC and value its importance. However, this does not mean that they are more likely to attend PCC. McCorry et al. 34 argued that the experience of miscarriage actually prevented one woman from seeking out any type of information on diabetes mellitus in pregnancy. She said:

I made a conscious decision not to read a huge amount, not to overeducate myself, because I knew that I have a tendency to be anxious, so therefore I thought – no, my job simply is to make sure that my blood sugars are good.

The literature suggested that previous pregnancy loss may encourage some women to attend PCC but certainly not the majority.

This systematic review indicates that not all women were aware of the existence of PCC services. Even when they were aware, several factors were barriers to attendance; some women considered themselves to be knowledgeable enough whereas others did not think that PCC was relevant. It is also important to bear in mind that women do not necessarily equate pregnancy planning with attendance at PCC.

Diabetes mellitus in pregnancy as ‘hard work’

Out of the 1228,29,32–35,37,39–43 studies that explored everyday life, diabetes mellitus and identity, eight28,32–35,40,41,43 describe the way that women regarded diabetes mellitus in pregnancy as ‘hard work’ or something that needed to be worked at.

There is a particular focus within this subtheme on the work required to reduce and maintain acceptable blood glucose levels. Three32,41,43 out of the 10 studies that explored diabetes mellitus in pregnancy as hard work focused on this issue. For example, one study41 discussed the requirement for women to test blood samples between four and seven times a day to establish glycaemic levels. The author found that the women in the study regarded this testing to be a ‘chore’ and ‘hard work’. One of the women interviewed talked about the hard work she put in to get her blood glucose levels right ‘I worked really hard to get my sugars at an acceptable level’ (p. 267). 41

In another study,32 women also talked about the ‘discipline, stress, and sheer hard work involved’ in establishing good glycaemic control. The women interviewed in this study described the lengths to which they had to go in order to achieve this. One woman described how she changed jobs and eventually gave up work before having children in order to accommodate the preparation for pregnancy: ‘I decided to give up work before I had children, because of the immense amounts of pressure to try and keep everything controlled and everything so tight’.

Another woman in the same study described how the structure of her life changed completely prior to conception because she lost all recognition of the symptoms of hypoglycaemia. She said ‘I could be walking around on 1.5 mmol and then just pass out, my whole life structure pretty much changed’. 32

Some women talked about how they worked alongside their diabetes mellitus team in order to establish good glycaemic control. One of the interviewees in third study43 remarked on this: ‘. . . because we know the implications of being pregnant in diabetes . . . we worked with them for about 18 months . . . there was a dramatic change to the HbA_1c . . .’. 43

In other studies, women talked about the way in which ‘real life’ got in the way of preparing for pregnancy and managing their diabetes mellitus. This was explored by five studies. 34,35,38,40,41 Richmond40 for example argued that although achieving optimum glycaemic control is of paramount importance to the health professionals that care for women with diabetes, complying with medical advice often slips down the list of other important ‘things to do’ for the patients.

All of the participants in this study, each of whom had T1DM, said that looking after themselves was a very time-consuming activity and that monitoring their blood glucose so often left them with little time to do anything else.

Other studies echoed the views expressed by all of the women in Richmond’s study. 40 In one study,34 which also focused on the experiences of women with T1DM, women said that life ‘got in the way’ of things. The participants in another study28 (women with pre-gestational diabetes mellitus) said that work and responsibilities for childcare got in the way of recommendations for diet and exercise.

The frequency of health-care appointments for women with diabetes mellitus was also cited as an issue that was problematic in the context of women’s lives, particularly as women with diabetes mellitus require more frequent visits in comparison with the general population. In the participatory research project carried out by O’Higgins et al. ,38 some women said it would be difficult to make the time to attend PCC because of travel, work and childcare commitments. Some of the comments on this included ‘Difficult for some people to take responsibility of time management to get into clinic’ and ‘Some may find the frequency of appointments as interfering with work/life, etc.’. 38

This was also noted by Lavender et al. 33 Writing specifically about women’s experiences of pregnancy, the authors argued that women’s lives were seriously disrupted by diabetes mellitus and that it would be useful to explain this to women before they become pregnant. One of the women in this study described the stress she experienced:

I would say it’s more stressful because you’re more in hospital. You’re coming at least twice a week . . . It’s too much. And then I think, ‘Oh, my God, is this all necessary?’ and the waiting times are just a laugh.

In two35,41 out of the five34,35,38,40,41 studies that explored the views of health professionals, there was some evidence to suggest that some practitioners were aware of the hard work and motivation required by women with diabetes mellitus in pregnancy. For example, one of the respondents in the study by Mersereau et al. 35 said:

The whole course of the pregnancy is going to be a lot of work. She’s going to be doing her blood sugars a lot more often than she usually does, and her diet is going to have to be under much tighter control.

Similar views were expressed by practitioners in Shawe’s41 study. She argued that health professionals often recognised the motivation to ‘work hard’ as one of her participant’s commented that ‘we worked really hard, and her HbA_1c is now 6, so she’s done really really well, very impressed . . .’ (p. 267). 41

There is relatively little literature on the perspectives of health professionals who support women with diabetes mellitus in pregnancy and pregnancy planning. Only two studies35,41 indicated that some health professionals may be cognisant of the work put in by women, but it is not clear how widespread this is nor is there evidence to suggest that this acknowledgement is shared with women themselves. In four34,38,40,43 of the studies that focused on women’s views and experiences, women were often critical of health professionals, arguing that they did not appreciate the work it took to manage their diabetes mellitus in pregnancy or in preparation for pregnancy. In the study by Richmond,40 for example, women expressed a fear of being labelled as ‘difficult’ by health professionals if they were unable to meet stringent requirements for blood glucose control. One woman in this study described herself as ‘trying really hard’ even though she had not been successful in the eyes of her practitioner. 40 In the study by McCorry et al. ,34 one woman said that she was ‘frustrated’ because ‘doctors need to be aware that pregnancy for some women is a roller coaster’. 34 O’Higgins et al. 38 noted a similar pattern and said that women struggled with diabetes mellitus management and wanted health professionals to acknowledge this. One of the women in their study spoke about this need for acknowledgement: ‘Staff don’t realize you live a real life and you are not a robot and there will be days with high blood sugars . . . Sometimes we will get it wrong’.

In another study,43 women also expressed the same view that managing diabetes mellitus in pregnancy was hard work and that health professionals did not acknowledge how difficult it was and the physical and emotional effort that went into it. One of the interviewees in this study said ‘It just feels like it’s not quite realised . . . how hard it can be . . . it’s a constant, constant battle, the injecting is nothing. It’s everything else that goes with it that you have to control all the time.’ [emphasis in original].

The findings of this review suggest that women consider pregnancy to be hard work and the management of blood glucose as something to be worked at. Many women became frustrated when they felt that health professionals did not acknowledge, or were dismissive of, the work that they put in to manage their diabetes mellitus. The limited literature that exists on the perspectives of health professionals suggests that some professionals are aware of this, but it is not known if and how they communicate this to the women they care for.

The desire for normality and control

It is not surprising that within the context of what has been described in the literature in the section Diabetes mellitus in pregnancy as ‘hard work’, the desire for normality and control in the context of such a high-risk and medicalised experience emerges as the second subtheme within the broader theme of ‘everyday life, diabetes and identity’. An analysis of the studies within this systematic review indicated that 833–35,37,39,40,42,43 out of the 1228,29,32–35,37,39–43 studies within this broader theme focused specifically on women’s desire for a more ‘normal’ experience out with the need to manage their diabetes mellitus.

In two33,42 of these studies, women expressed particular concern about not having enough control over pregnancy or their plans for pregnancy. In one study,33 women (with T1DM and T2DM) who had not previously been pregnant recognised the impact that diabetes mellitus would have on any future pregnancy. They feared being labelled and wanted the focus of their pregnancy to be on their pregnancy itself and not on their diabetes mellitus. One woman in the study said ‘It’s like you get a label on you isn’t it? And they just think, you know, they’ve got to focus on just that and I feel by focusing on my diabetes . . . it frightens me then and I start panicking about it [pregnancy] . . .’.

In the other study,42 some women felt that health professionals wanted to control if and when they had children and this meant that they were reluctant to engage with PCC. One woman, who had been pregnant before and was advised not to have more children, said that she had not sought advice from them again: ‘I don’t want to hear you telling me I can’t have more children, so I just went ahead’.

Another woman felt that health professionals wanted to control her pregnancy plans, which she found controlling and restrictive, and said ‘[i]t’s so restrictive . . . they’re planning when I’m going to have it, not when I want to have it’.

It is interesting to contrast the voices of women describing how they sought to achieve normality and control within the context of managing a long-term condition with the perceptions of the health-care professionals who care for women with diabetes mellitus. Two studies35,39 reflected the views of practitioners on this matter and, in particular, reflect a concern with ‘patient compliance’. In the first study,39 the authors argued that a ‘majority of physicians considered patient compliance with recommendations and patient follow-up to lifestyle changes to be major concerns . . .’.

This study, conducted in the USA, gathered data on the views of 510 physicians via postal questionnaire. The study aimed to assess the barriers to, and quality of, care received by women with diabetes mellitus from obstetricians and gynaecologists. In the second study,35 which reported the views of practitioners on the attitudes and barriers to achieving good glycaemic control, concern was also expressed about a lack of compliance and women were described as being ‘in denial’, not taking responsibility, not being motivated and not being proactive. One of the respondents in the study said ‘I think it’s just denial . . . Nothing’s going to happen to the baby. I’ll be OK if I skip a few days of my medication. I’ll be OK if I don’t check my sugars regularly, you know?’.

Although every woman will want to have a good pregnancy and a healthy baby, the review of the literature suggests that there is also an overwhelming desire to normalise pregnancy and to experience some of the excitement and joy of planning pregnancy, being pregnant and having a baby.

Some women just wanted their lives to be as normal as possible, in spite of having diabetes mellitus. Two of the women in the study carried out by Murphy et al. 37 highlighted this view. The desire for a normal experience of pregnancy and pregnancy planning is cited by both as the reason why they would not attend for PCC. One of the women in this study said ‘It was a lot to do with the relationship I was in as well, sort of like breaking up with him and I was . . .”I can’t be bothered any more to do that” ’.

The concept of enjoyment expressed by the quotation above can be found elsewhere in this systematic review. In another study,34 women reported that information they had received about the risks of pregnancy with diabetes mellitus had made them anxious and prevented them from accessing PCC. One of the women in this study spoke about the lack of joy in this: ‘For my first 3 months of being pregnant, I had no joy in it, no joy. I just kept fretting . . . and for a good part of it I didn’t tell anybody’.

Indeed, many women spoke about not just wanting a normal experience but wanting to feel the ‘joy’ of preparing for pregnancy. For example, Lavender et al. 33 proposed that health professionals should seek to normalise the experience of pregnancy for women to ensure that women had a positive experience, balancing ‘the need for safety with that of enjoyment’. 33 The study by Woolley et al. 43 reinforced this view. The respondents in their study spoke about wanting the focus to be on the ‘fun aspects’ of pregnancy, rather than on the medical management of their diabetes mellitus. When asked what was important to her, one woman said:

The fun aspects I suppose of being pregnant. Yes I’m diabetic, but I’m also just a normal person having their first experience of pregnancy. And I don’t know how to change a nappy or breast-feed just like everyone else . . . [emphasis in original].

The participants in Richmond’s40 study also talked about not being able to enjoy pregnancy. Two of the women in the study, who had been pregnant, previously talked about being ‘robbed of enjoyment’ and expressed feelings of anger and resentment towards their diabetes mellitus:

I think you feel anger more towards your condition more than the pregnancy, because you think well why can’t I just have a normal pregnancy like anyone else?

I don’t think diabetes and pregnancy goes at all, so there should be a massive ban on diabetics ever getting pregnant at the moment . . . because it’s like having about eight children . . . and you just can’t enjoy being pregnant.

Many of the studies in this review have highlighted that women with pre-existing diabetes mellitus are concerned about being able to control their experiences of pregnancy and pregnancy planning. Within the context of living highly medicalised lives, women seek to normalise their experiences of having a baby, wanting to experience the anticipation, joy and excitement that they see as part of a ‘normal’ experience. This desire for normality may impact on PCC when this is seen to negatively affect that desire.

The role of family and social support

The literature reviewed indicates that women’s experiences of pregnancy planning cannot be fully understood without placing them within a wider social context. The significance of family and social support networks in the everyday lives of women who experience diabetes mellitus in pregnancy or pregnancy planning is discussed in 628,29,33,35,37,41 studies out of the 1228,29,32–35,37,39–43 within this theme.

As discussed in The complexities of pregnancy planning, women’s pregnancy planning behaviour can be influenced by the views of family, community and culture. In particular, the literature showed that women’s contraceptive use can be influenced by the wishes of husbands and partners. 41 However, the views of friends and family have a more penetrating influence on women with pre-existing diabetes mellitus before, during and after a pregnancy. An appreciation of this can be seen in the literature focusing on the views of health professionals. One practitioner included in the study by Mersereau et al. 35 noted the influence of the husband and wider family on diabetes mellitus in pregnancy: ‘It’s really interesting, the cultural things going on sometimes. In what he [the husband] perceives to be good for the pregnancy or what the patient’s mother-in-law thinks should go on for their future grandchild’.

In Devido’s29 study there was also recognition of the role of the partner and wider family in supporting women. This study examined the experiences of 48 parish nurses in providing diabetes mellitus education and preconception counselling to women with T1DM or T2DM. Here, parish nurses appreciated that it could be difficult for women to follow lifestyle recommendations and that having ‘everybody on board’ to help could be really advantageous for them. Writing specifically about the experiences of South-East Asian women, Lavender et al. 33 concurred with this viewpoint, arguing that family and friends were the greatest influence on this particular group of women. They discussed the case of one parous woman who was ‘not allowed to breastfeed’ because her mother thought this would put the baby at risk of diabetes mellitus. Lavender et al. 33 concluded that it would be useful if health professionals engaged more with significant family members, when appropriate.

An analysis of the published studies shows that, in some instances, women wanted more social support than they currently had. For example, one study28 reported that black women especially value social support from family and friends, but that this is not always in place. One woman in this study felt that it would be easier to be healthier with more social support. She said ‘I think having a support system in every aspect of your life, at home and work [would make having a healthy pregnancy easier]’.

The authors argued that a lack of social support is a significant barrier to the care of women with pre-existing diabetes mellitus.

In the study by O’Higgins et al. ,38 the women who participated in the focus group discussions expressed the view that women’s social support networks were invaluable in supporting women to maintain a healthy lifestyle. They also felt that the involvement of significant others in women’s care could be useful and would enable women to receive ongoing understanding and support, as well as informed opinions. Shawe41 also commented on this need, specifically in relation to the management of hypoglycaemic episodes. As discussed in Knowledge of pregnancy planning, diabetes mellitus and risk, the literature suggests that the management of hypoglycaemia causes women considerable difficulties. Shawe41 suggested that partners, friends and family can have a significant role in managing hypoglycaemia in order to support women and to deliver glucagon treatment if necessary.

Although some women were pleased to receive social support and had good networks, others found the influence of family and friends to be unhelpful. For example, the literature suggested that women with pre-existing diabetes mellitus could sometimes feel additional pressure from family and friends in relation to the decision to have children and when trying to conceive. 33 Sometimes women also felt ‘nagged’ by their family. This was also reported by Shawe,41 who described how this ‘nagging’ could sometimes make women feel resentful and rebellious.

Shawe41 described how women felt resentful and that it made them feel ‘rebellious’. One woman described just wanting ‘to be left alone’.

The literature review showed that whether women receive too little social support or were well networked within a circle of friends, family and community, and regardless of whether they saw the support they received as helpful or not, the role of partners, family and wider social networks were an important part of women’s everyday lives.

Effective communication and relationships

Twelve26,28–33,35,37,38,40–43 of the studies in the systematic review focused on the topic of communication and relationships between women and their health-care providers. The studies focused both on the consequences of poor communication on how women came to feel about seeking advice and on the benefits of good communication and relationships, and the impact this can have on the uptake of PCC.

Six32,33,38,41–43 of the studies suggested that health-care practitioners can adopt communication styles that are perceived by women to be authoritarian and paternalistic. The authors argued that this can make women feel ‘nagged’, judged, intimated and afraid of being ‘lectured’. In one study,33 which explored the experiences of white British and South-East Asian women with T1DM or T2DM, one woman recalled a previous experience of attending a preconception clinic:

I found it really intimidating just because it was . . . the way that it was kind of drummed in, ‘You can’t get pregnant until your blood sugars right!’ kind of thing and it were like, ‘Yeah, fine’ but who are you to kind of judge me on that.

Very similar findings can be found in the study by King and Wellard. 32 In this study, which explored the experiences of seven women with T1DM living in rural Australia, respondents said they often had to deal with health professionals who were very authoritarian in their approach. Women said that this approach was undermining and sometimes made them fearful. One woman said she was told ‘. . . just don’t get pregnant now because if something happens to the baby you will never forgive yourself’.

Another woman described being bullied by her obstetrician:

With my first obstetrician, my pregnancy was made into a side show . . . he went completely overboard . . . I would be doing 13 tests a day and if I missed one. He’d have me in tears, [saying] don’t you care about this child.

In contrast, the women in this study said they were satisfied with their care when they felt treated like ‘adults’. In these instances, they felt supported and more confident in the management of their blood glucose. Given the rural setting, interactions were not always conducted face to face but sometimes by e-mail and telephone calls, and these methods worked well. According to one study, nulliparous women, in particular, are most likely to feel judged and intimated by health professionals. 42

Shawe41 suggested that communicating in a style that was authoritarian and paternalistic is a form of social control. One assumes that such a style is intended to be informative and to encourage positive behaviour change. However, Shawe41 argued that, for some of the women in her study, the opposite was true because it made women far less receptive to advice or care. Although most of the published studies that discussed this issue would concur with Shawe, two studies do not support these findings. 38,43 In fact, Woolley et al. 43 argued that that women in their study thought that ‘scaring women’ could actually encourage women to attend PCC.

Several of the studies reviewed conclude that better communication is an important aspect of improving care for women with pre-existing diabetes mellitus,28,31,37 but that health professionals are often seen by women to be unsupportive of their needs. 42 Holing et al. 31 argued that the way in which practitioners deliver information to women is ‘crucial’ to the delivery of effective health care. In addition, Murphy et al. 37 suggested that health professionals involved in the care of women with diabetes mellitus need advanced communication training.

In addition to highlighting the importance of authoritarian and paternalistic approaches on women’s receptivity to PCC and advice, the focus of the advice that women had received previously was also a significant aspect of the findings in seven of the reviewed studies. 28–30,32,35,37,41 These studies highlighted that practitioners often focus on the risks and possible negative outcomes of diabetes mellitus in pregnancy rather than on the opportunities for positive change.

Women with T1DM diagnosed in childhood or adolescence often recalled being told that they should not, or cannot, have children. For many women this is a devastating blow, leading to fear and anxiety later in life. Several of the women in the study by King and Wellard32 expressed this view and the fear that they felt. One woman described what she was told when she was diagnosed as a child:

As a child when I was diagnosed, at that time, I was told that I may never have children and that if I was to have children that perhaps the last 3 months of pregnancy would be spent in Melbourne [major city], in bed and restricted and things like that, so having children was always a scary, scary thing for me.

A very similar picture is found in the findings presented by Shawe, 41 Griffiths et al. 30 and Spence et al. 42

More generally, the literature suggests that the focus of information and advice given to women with diabetes mellitus is quite negative and that this negativity does not benefit the relationship between woman and health-care provider, nor the likelihood that women will be receptive to PCC. Negative messages received during attendance at PCC also contributed to women’s anxieties. In the study by Griffiths et al. ,30 three women talked specifically about how fearful they felt after attending preconception counselling. Instead of the experience being informative and supportive, women became upset and unsure about what to do. One woman said:

We’d gone to the hospital and we’d had prepregnancy counselling . . . which wasn’t very positive . . . it was a very, very negative experience . . . We were filled with dread really about the consequences of getting pregnant – for me and for the baby . . .

Another woman, this time reported in the study by Murphy et al. ,37 also recounted the negative impact that PCC could have on women’s experiences:

Well, now as soon as you mention the P-word [pregnant] they’re gonna come down on me like a truck. ‘Oh you shouldn’t be havin it.’ And that’s gonna make you feel even worse in the first place . . .

In the study by Collier et al. 28 – a US study that reported on the experiences of black, white and Spanish women – women commented specifically on how much more receptive they were to care and advice when health-care practitioners could focus on the positive aspects. One woman in their study wanted to know about the positive effects of glycaemic control. She said ‘There was just all kinds of negative stuff, and sometimes you don’t want that doctor to just put it out there like that . . . Tell me. but give me something positive also’.

What is interesting about this is a desire for information that is positive and balanced. In the study by Mersereau et al. ,35 one of the five studies29,35,36,39,41 that reported on the views of health professionals, practitioners commented on how they talked to all of their patients mostly about complications and risks to the baby. However, Devido,29 who also focused on the perspectives of practitioners, said that what is required is ‘A more positivistic approach . . . rather than consequence related’ (p. 76). 29

In summary, the published studies indicate that women’s needs for PCC are best met when health-care providers are able to communicate effectively with the women in their care. However, communication was often perceived as authoritarian and paternalistic, and women sometimes felt judged, guilty, scared and pressurised rather than empowered and supported. This review suggests that advice often focused on messages about negative outcomes rather than on the positive changes that women might make when planning a pregnancy. Focusing on the latter might encourage some women to engage more with the support being offered by health-care professionals.

The provision of individualised care

The findings of this review suggest that when women receive advice and care they want to be acknowledged as a person first. In other words, they want to be recognised as a whole person who is neither ‘just’ a diabetic patient, nor a pregnant woman, but as someone who has individual needs, a life history, aspirations and goals for the future, and a ‘real life’. Half of the studies included in this systematic review explored the importance of providing individualised care as a means of improving women’s receptivity to pregnancy planning.

The review of the literature suggested that advice on pregnancy planning is not always delivered in a timely way. It suggested that advice could be offered routinely or opportunistically but without focusing on women’s particular needs. Richmond,40 in her study of 11 women with T1DM, argued that women could receive constant medical attention that came across as repetitive, rather than informative. In the study by Murphy et al. ,37 which specifically focuses on the views of women who did not attend PCC, several women described how they were less receptive to PCC because they had been offered information and advice at times that were not relevant to them. Some of the women said:

I’ve always been told ever since I was about fifteen or sixteen attending clinics how important it is . . . I always used to laugh, you know, and say, I’m only sixteen, I’m not going to have a baby and . . .

I mean we weren’t really thinking about it at that time so I mean it was all like pushed to one side. Yeah, so I probably wouldn’t have taken much notice about it if they would have said anything.

It’s not that the doctor was kinda skimming over it; it was always me kinda wanting to hurry that part along4

If you’re coming up here every 3 or 6 months; if every time you come in you’ve been told, ‘And if you’re planning a pregnancy don’t forget to make us aware’, I think that you’d get a bit sick of it to be fair.

In another study,34 approximately one-third of research participants said that they just ‘filtered out’ information about pregnancy because it was not important in their lives. One woman, who had attended a dose adjustment for normal eating course, said that she just ‘tuned out’ when anything about pregnancy planning was mentioned.

Constant advice that is repetitive and untimely can actually be a disincentive to women in accessing PCC, although one study dissented from this perspective. 27 In this study some women were generally very receptive to discussions about pregnancy planning even if they had not brought the topic up themselves. For some women this was preferable because they found it hard to raise the issue.

In the study by Power et al. ,39 all of the doctors said that most times, if not every time, they discussed pregnancy planning with women, they did so regardless of whether or not the woman was planning to have a baby. In contrast, some of the practitioner respondents in Shawe’s41 study described how they tried to adopt a more personalised approach to how they provided PCC.

Of course, although this approach might seek to acknowledge the individual circumstances of the woman concerned, other literature warns against an approach based on stereotypes and preconceived ideas about when it is the ‘right’ time to have a baby (see The complexities of pregnancy planning for a discussion of this). However, not all of the practitioners in Shawe’s study41 took this approach. One of the diabetes mellitus specialist nurses who was interviewed acknowledged that advice on pregnancy planning was relevant only ‘when it was relevant’ and that sometimes women found it hard to discuss this.

The literature reviewed suggests that women prefer care that is focused on them as individuals. This means focusing on them as a whole person and not just on the health of their fetus or future baby or on their diabetes mellitus care. This view was expressed in one study,26 in which one participant said:

And then that’s how it felt, is it just because I’m carrying a baby, because otherwise they don’t care, or they don’t care about me. And that’s how it is, isn’t it? And it’s very, like, here you are, you’re pregnant and we’re focusing on the baby.

Although concern for the fetus is entirely understandable, a lack of focus on the whole person meant that this woman felt that nobody cared about her. In other studies, authors report that women complain when the focus is on diabetes mellitus rather than on the experience of pregnancy. 33,43

Providing care that is based on individual need means that health professionals must have an understanding of an individual’s history and goals. Several studies focused on this and discussed the importance of the relationship between the woman and her practitioner and/or the importance of continuity of care. In the study by Spence et al. ,42 the authors suggested that women preferred someone who was ‘approachable’ and who understood their ‘real life’. The study included women with T1DM and T2DM but older nulliparous women in particular commented on the difficulty of establishing a relationship with their diabetes mellitus team because of a lack of continuity in care. This was important because it prevented them from being able to ask advice about planning a pregnancy. One woman in this study said ‘. . . I don’t get the same person, so I could never have that conversation’. 42

The importance of continuity of care was also a finding in two other studies. 34,43 In both studies, women expressed irritation and frustration with health professionals who did not know them or provided care that was not individualised. For example, one woman in the study by Woolley et al. 43 described the irritation of having to repeat herself:

Telling my story . . . I think was a big thing. Every time I met a new professional I had to explain. An’ it irritated me after a while, ‘cos I thought ‘Read the notes before you walk into the room to see me’.

A woman in the study by McCorry et al. 34 expressed her irritation when her individual needs and goals were not known:

I go and speak to my doctor, and the doctor says to me, ‘Well, it’s important you get your bloods done [if planning a pregnancy].’ Well, I knew that already. What was the point in me going to the doctor?

There is a certain view that advice on PCC should be provided to every woman of childbearing age frequently, either routinely and/or opportunistically, but if it is not timely the literature suggests that women are unlikely to be receptive. Furthermore, providing advice routinely and/or based on preconceived ideas that a woman might be thinking about pregnancy can be off-putting. This systematic review shows that women are generally more likely to be receptive to PCC when advice is tailored according to individual need by health professionals who have a personal relationship with each woman and understand her life history and goals for the future.

The co-ordination, organisation and delivery of care

In focusing on the issue of meeting women’s needs, 13 of the studies in this systematic review have highlighted concerns with the way in which PCC is co-ordinated and delivered. 27,29,30,32,33,36–43 In particular, there appears to be a lack of clarity as to who is responsible for the delivery of PCC and considerable discussion about which practitioner is best placed to provide it. Many of the studies, particularly those that focused more explicitly on the barriers to, and facilitators of, the uptake of PCC, or on its delivery, also discussed practical suggestions on how PCC services could be improved. Some studies also focused on the need for increased contraception counselling.

The literature reviewed raises questions as to who is responsible for the provision of PCC with the multidisciplinary team of health professionals who deliver care to women with diabetes mellitus. On analysing the data presented within the various studies, it is particularly helpful to explore the issues from the perspectives of practitioners working in either secondary or primary care as this seems to be where the issues lie. The study by Mortagy et al. 36 is particularly relevant because it sets out to explore the perspectives of GPs and secondary care health professionals on the role of the GP in delivering PCC to women with diabetes mellitus. Many of the seven members of the secondary health-care team who were interviewed raised concerns about the role of the GP and the quality of service provided. Hospital team members argued that GPs were crucial members of the multidisciplinary professional team but that they were missing. One diabetes mellitus specialist nurse highlighted the critical nature of the GP role, especially in relation to identifying women with T2DM. Some members of the secondary care team thought that GPs did an excellent job and actually wanted to see more PCC being taken on by GPs in their area, especially as this meant that women could be seen ‘closer to home’. However, others were sceptical about the quality of service provided. One hospital consultant said ‘. . . there are some GPs who have no interest at all and their general level of diabetes care is very poor’. 36

One particular issue seems to be a lack of referrals from GPs to specialist hospital clinics. A hospital consultant spoke about this issue and compared referrals from the assisted conception unit with referrals from GPs: ‘Well, I think they’re [assisted conception unit in hospital] very good, because I get some referrals from them, whereas, I don’t get any GP referrals for preconception care. I cannot remember if we have ever had one’. 36

The health professionals interviewed in the study by Shawe41 also expressed concern about a lack of referrals and the lateness of referrals when they did occur.

Even though secondary care health professionals value the role of the GP in the provision of PCC, they are mostly critical of the care provided considering it to be either missing or poor quality. However, the authors of this study also interviewed eight GPs. 36 It is interesting to note that although hospital team members thought that GPs could play a valuable role, most GPs thought that the problem of low uptake of PCC was only a problem that affected a ‘minority of minorities’. Moreover, T2DM was seen to be a ‘disease of the elderly’ rather than something that might affect women of childbearing age. These views may well have a bearing on the services GPs provide and the emphasis they place on providing PCC or referring women on. As might be expected, there was a contrast in perspective between GPs with a special interest in diabetes mellitus and those without. One diabetes mellitus lead in the study by Mortagy et al. 36 described him/herself as highly involved and said:

If they were young and fertile, I’d make sure their drugs were . . . safer if they got pregnant and I would get their control as good as it was and I’d emphasise they must come and see us as soon as they’re pregnant.

In contrast, the authors point out that GPs without a special interest in diabetes mellitus talked quite vaguely about PCC. One GP said he or she had ‘never really thought about this topic before . . .’. 36

In relation to the topic of making referrals the division of responsibility between primary and secondary care seemed quite blurred for GPs and, as the authors argue, a source of tension. In one account given it is clear that this blurring of responsibilities leads to missed opportunities for care. One GP diabetes mellitus lead in the study by Mortagy et al. 36 said:

Although we tried to engage her [the patient] here as well as her seeing the hospital . . . we then didn’t make her come in and see us. So, because we weren’t doing the organised care, we won’t have gone through the template . . .

The GPs in this study thought that PCC should be a joint responsibility between primary and secondary care. Both GPs and secondary care health professionals believed that a lack of clear guidelines on how to provide PCC and when to make referrals was responsible for the blurring of boundaries and source of tension.

There was also some limited discussion about a lack of liaison with fertility services, but this was mentioned only in the study by Shawe. 41 The concern here was that some women who became pregnant after undergoing fertility treatment may not be simultaneously planning for pregnancy in relation to the management of their diabetes mellitus.

Shawe41 and Murphy et al. 37 discussed the provision of pregnancy planning and contraceptive services and their data indicated that another gap in service provision might exist. The participants in Shawe’s study41 who worked within a secondary care health team believed that having conversations about contraception was not really their role.

The data presented indicate that some practitioners do not see themselves as qualified to provide contraceptive advice, preferring to refer women either to a family planning clinic or back to their GP.

Murphy et al. 37 also highlighted the significance of contraceptive services in relation to the role of PCC, arguing that they are particularly relevant to younger women for whom a future pregnancy will seem a long way off. But, the authors argued that better integration between diabetes mellitus care and reproductive health-care services is needed across both primary and secondary care, warning that failure to provide co-ordinated care will have ‘devastating consequences’ for women.

All of the studies that commented on the role of the health professionals in the delivery of PCC concluded that more information, advice and training was needed. For example, in Shawe’s 200841 research, health professionals viewed pregnancy in diabetes mellitus as quite a specialist area of work, saying that there was little training or education available specifically in relation to the provision of PCC. All of the GPs interviewed in the study by Mortagy et al. 36 thought that further training and support for them was needed. Another study identified that further training on diabetes mellitus in pregnancy was needed for midwives. 32

Many of the studies reviewed commented on how PCC is currently delivered and how it might be delivered in a more effective way at a practical level. Many suggestions were given and one common suggestion was to use peer support as a means of educating women about diabetes mellitus and as a way of providing support to for women more generally. 29,38,40–42 In one study,38 all of the women involved in focus group discussions felt that peer support could be a powerful tool. Ideas for peer support included coffee mornings and support groups. Richmond40 noted the value of support groups, including postnatal support groups that brought together women at different stages of pregnancy and pregnancy planning. Ideas such as this were also discussed by the health-care professionals in Shawe’s study. 41 One practitioner spoke about having set up ‘girly nights’ but admitted that these nights had not worked because attendance had been very disappointing. When asked about peer support, the women who participated in the study by Spence et al. 42 responded positively to the suggestion and said that it would be ‘nice chatting and getting more information from friends who have diabetes’.

The use of technology such as apps and interactive online resources was also suggested. For example, in one study,38 participants suggested setting up a Facebook (Facebook, Inc., Menlo Park, CA, USA) page or using blogs and forums. This was an interesting suggestion given that many women are already turning to the internet for advice and information on diabetes mellitus in pregnancy. Of the 15 published studies that addressed the views and perspectives of women, 10 demonstrated that women use the internet as a source of information when planning a pregnancy. 27,28,30,32,34,35,38,41–43

One of the women in the study by King and Wellard32 said:

. . . there definitely needs to be more information out there . . . I was really surprised at first because there was just nothing there . . . My basic support was a website based in America that was for diabetic pregnant mothers and type 1 diabetics and it was a sole lifeline.

Some studies (e.g. Shawe41) also suggested that women might prefer discussing PCC with female health professionals. In another study,42 the authors also argued that some women, especially older nulliparous women, may have a preference for a female doctor or nurse. One of their research participants said ‘They should have a dedicated female doctor that you could go for pre-pregnancy advice . . . I know the doctor I see is very nice and all, but sometimes he can’t even be bothered lifting his head to look at me’. 42

In brief, a central finding of the included studies was that there is a lack of clarity in how PCC was delivered. It is not clear who is responsible for PCC or who might be best placed to deliver it, and this lack of clarity can lead to gaps in service provision. The place of pregnancy planning and contraception is also in question as is the integration of fertility services. The published research also indicated that many health professionals required further information and training on PCC so that they might provide a better service to women.

Planning

Participants shared a range of obstetric histories. Of the 12 women who were interviewed, two were pregnant for the first time, six were pregnant with their second, third, fourth or sixth child, two women were not pregnant (one of whom was hoping to conceive whereas the other had no immediate plans or long-term relationship but wanted children in the future), one women had one child but did not have immediate plans for more, and one woman had four children and had since been sterilised.

Preconception care might be relevant to all women with pre-existing diabetes mellitus, but not all women planned to get pregnant. The profile of women with diabetes mellitus can be diverse as the above summary highlights and some women disclosed at interview that their pregnancies were planned whereas others said they were not. For women with a history of more than one pregnancy (multiparous), not all of their pregnancies were planned, reflecting the reality that planning is not just about individual behaviour and choice. The same woman/couple might behave differently at different times and the findings show diversity both within the group of participants and at the level of the individual. As discussed in the literature above (see The complexities of pregnancy planning), pregnancy planning is complex and diverse and women do not necessarily make choices consistently and according to one rational plan. Therefore, in terms of planning services and support it is unhelpful to assume that they do. For example, illustrations from the data show that Rani, a British Pakistani woman with six children, had T2DM, had suffered a miscarriage, was pregnant at the time of interview and had planned five of her seven pregnancies. The two unplanned pregnancies were a result of failed contraception, as discussed below. When asked specifically about pregnancy planning she said ‘Hmmm this one and the last one wasn’t but the rest was’.

Susie, with T2DM, had twins and was 8 weeks pregnant at the time of interview. Neither pregnancy was planned as she disclosed:

Erm, with your pregnancies, erm, were they planned?

No [. . .] [D]efinitely not!

Both of them weren’t planned?

Yeah, definitely not!

Aziza was a Pakistani woman who had T1DM and had four children, two of whom were planned and two who were not, as she explained:

OK and were they all planned pregnancies?

Two were, two weren’t [. . .] eldest wasn’t planned [. . .] yeah and she was born at 31 weeks – pre-eclampsia. [. . .] The second one was planned. He was born at 38 weeks err – he weighed about 5 and a half pounds. [. . .] Third one wasn’t planned. I’ve got two it’s enough you know [. . .] third one was born 37, 38 weeks. She weighed a whopping 8, 14 [ . . . ] and the youngest one was planned and he weighed erm 8, 3.

Contraception

When participants were asked about their contraceptive choices, their answers varied. For example, the most common form of contraception was condoms, which were used by four participants, and the next most common was the contraceptive pill, used by three women. Surgical sterilisation was the choice of two women, one of whom was pregnant, whereas another had been sterilised following her fourth pregnancy. Two participants did not take any contraceptive precautions. Significantly, some of the participants who did not take precautions did not necessarily want to get pregnant.

For example, Noor was a Pakistani woman with T1DM who had a history of miscarriage and kidney disease. She claimed to have planned her pregnancies but at interview disclosed that she and her (Pakistani British) husband did not use contraception and talked vaguely about how her husband ‘(I)s against this thing’ and also that she was scared of taking any more medication: ‘I only have one kidney now, so for this reason I am scared and don’t want to take any extra medication’.

Susie, who was a white British woman, had T1DM and was 6 months pregnant. She had been advised that she could not conceive, as she explained:

Yeah, because I got told I had, before I got pregnant with my twins, I had a large fibroid which I’d been carrying for at least 5 years but nothing was done about it until obviously the year before I was in that much severe pain [. . .] that erm, something had to be done, then in the March I went to have a test with gynaecologists, and they says there was 97% chance of me not ever having any children.

97%?

Yeah. So then . . . but in the June, that’s why it was such a shock because in the June I fell pregnant . . .

Rose, who was white British, had T1DM and also had an immune liver disease, expressed uncertainty about her ability to conceive, as she explained:

So we didn’t know how that was going to affect like I could get pregnant, being on . . . I’m on high doses of steroids and immune suppressants and they can obviously affect your fertility and things . . . we were trying not to get our hopes up too much . . . we were very happy when we found out . . .

Rani, with T2DM, talked about how the coil had ‘failed’:

Yeah, after the younger one, 3 years now and it was 3 years – 2, 3 years when I had it . . . when I got pregnant with her.

Oh so you had had the coil for 2, 3 years and then you had got pregnant?

Yeah

OK, erm did they take it out for your birth . . . for the birth?

[T]hey couldn’t find it [. . .] they didn’t find it and err same for this one, I went for a scan they said they sort of think it’s gone a bit down [. . .] but then I went for another check-up and they can’t find it.

These quotations illustrate some of the complexity and diversity involved in making contraceptive choices alongside managing a long-term condition. Although these choices are not confined to people with diabetes mellitus, some of the women appeared to be confused about their fertility status, which suggests the need for a more nuanced approach to preconceptual care that acknowledges the need for clear guidance on women’s fertility status. The women interviewed did not appear to make a link between the need to prevent pregnancy and the use of a reliable contraception.

Referral

Participants talked about their awareness of preconceptual care – and mostly awareness seemed to be raised during hospital diabetic care. Indeed, the data show that being referred to PCC was the most common reason for women’s attendance. Although it seems to be self-evident that women who were referred to PCC and were recruited to this study through secondary care were in the majority, that is 10 out of 12, not all of these women were at the preconception stage. Some had been referred during their pregnancy and others between pregnancies. In the case of the two women with no previous obstetric history, one (a medical practitioner) told us she would attend PCC if and when she planned to get pregnant and the other was attending PCC at the time of interview. If recruitment had continued, data on this would have revealed more information on the lack of uptake as more women in that target group would have been interviewed. However, it is clearly a mistake to assume that women who attend PCC clinics do so from awareness of the existence and usefulness of such clinics, or at the preconceptual stage, which raises the question of how to get the timing right and who is responsible for any referral.

For some participants, the distinction between PCC and what was diabetic antenatal care was not always clear, as Xena, with T1DM, and who had one child explained:

[E]rr it all kinda blurred into one really, because, because Dr Ahmed is my pump consultant and my preconception consultant, often I’ve found it difficult to pick apart which appointment was for which really, erm, because I was always having blood tests for one or the other, but because he oversaw both actually that didn’t matter, so and the care was, the care was really good and the nurses were fantastic as well so I didn’t have any problems. I knew where I could go to if I needed to.

Xena

Lilly, who had been diagnosed with T1DM 24 years previously, had been referred by the diabetes mellitus nurse at her GP practice 2 years before her first child was born and was in the third trimester of her second pregnancy at the time of interview. Lilly was very pleased with the way the service addressed all of her needs, as she explained:

[laughs] if I needed a dietician, I’ve had a dietician, if I needed my eyes done, I’ve had my eyes done, erm anyone I’ve ever needed to speak to, or bloods done, or anything like that, they’ve just always been there or I have been referred and helped as soon as they could yeah.

Erm what do you think helps facilitate the care?

The staff, the people, they are just lovely. Nothing is too much trouble.

Although the data show mixed views about the experience of PCC, and some confusion about its distinctiveness, it was clearly highly appreciated by some women. However, worthy of note is that there did not appear to be a direct correlation between the length of time women had managed their diabetes mellitus and the way in which they valued PCC. Women with lots of experience in managing diabetes mellitus still valued attending PCC, although, the same could be said for specialist diabetes mellitus care. However, those who valued their care did not always specifically highlight how it prepared them for pregnancy. It is reasonable to assume that women who regularly attended the hospital diabetic clinic would be referred to PCC, but sometimes this appeared to comprise the same team. Indeed, there was an obvious overlap between the role of practitioners in diabetic care and preconceptual care as well as that of antenatal care when women had been referred ‘late’.

Blood glucose control

Blood glucose levels seemed to dominate the discussion on preparing for and managing pregnancy. Seven out of the 12 women interviewed were using an insulin pump and valued the improved blood glucose control they gained from continuous insulin administration. Four women used insulin injections whereas one took oral medication in the form of metformin hydrochloride.

The first quotation from Carol, who had been diagnosed with T1DM 26 years previously (for which she administered subcutaneous insulin injections and took metformin hydrochloride tablets), was at the end of the second trimester of her first pregnancy, reflects an improvement in her blood glucose control that she attributed to regular monitoring:

Loads better yeah it’s a good, eh, it’s a good kick in the right area [laughs] [. . .] to err to help sort of make it go in the right direction. But my control is the best it’s ever been . . . so it’s been a really good thing actually. I’m quite healthy anyway but I’m healthier now then I’ve even been.

Yeah, are you going to try maintain this as well?

Yeah, hopefully yeah, I mean I don’t, I haven’t made major changes so but my HbA_1c is down to 6.9, which is a lot lower so yeah hopefully carry on with it and not having as many hypo’s and stuff like that so [. . .] I’m hoping to continue with it . . .

Rose, who was in the first trimester of her first pregnancy, had been diagnosed with T1DM 6 years previously, used an insulin pump and attended PCC from the time of getting married. She explained how the pump helped her:

Yeah so – when I, when I got married because we were Catholic we knew we wouldn’t be using contraception, I joined the preconception clinic. Erm – so I think I had my first meeting with them a week after I was married or something, so I’ve been seeing them periodically in the run-up you know and err – I got switched over from injections to a pump [. . .] and that massively improved my control and that’s it beeping now, sorry [laughs].

[laughs] Erm right . . . so what was your diabetes care like before your pregnancy?

So I was on . . . I was on . . . except for the year before I have been on injections, I have been on Lantis and Novarapid . . . erm I had periods when it wasn’t so good you know, you get a bit bored of doing it all and especially when I was younger and err . . . but generally it was it was quite good and I was happy . . . just sort of got on with it…and then, like I say, July last year I moved over to a pump and my control got a lot better, so a lot more . . .

Yeah so why didn’t you use the pump earlier?

Erm just ‘cos no-one had really suggested it . . . I mean they obviously take a lot of funding and it’s a lot of work to get, you have to go on courses and it’s a lot more, more intensive you know you can’t, with the injections you can be a bit more like freely and easy like if you’re having a bad day and you don’t manage it that well it’s not that big a problem, but with the pump you have to pretty much be on it all the time and you know, you, you can’t just fudge it, you know you have to keep testing your blood, keep making the adjustments, erm so it was really when, when we’re looking at the idea of getting pregnant that, erm, Dr Ahmed really started pushing for a pump.

Although several participants reported that using an insulin pump to deliver continuous subcutaneous insulin helped with their blood glucose control, there seemed to be different levels of ease of access to pumps.

Many participants were experts in their condition, having lived with diabetes mellitus and managed it clinically in terms of blood glucose measurements and adjustments to insulin rates alongside diet for many years. Among the nine women in the study with pre-existing T1DM, disease duration ranged from 2 to 27 years. Nine women had been diabetic for over 10 years, of whom four women had had diabetes mellitus for over 20 years and all were under the care of specialists in diabetic care. Despite their level of knowledge, some women clearly found attendance at PCC helpful in terms of the impact on blood glucose control and having folic acid prescribed to prevent neural tube defects. Less obvious, as discussed in the section below, is the impact on ‘lifestyle’ changes even though most women were aware of the need to make changes. For those with T1DM, these changes were part of their understanding but they were made more aware of their significance on pregnancy outcomes from discussion with specialist carers.

The data showed that being experienced in the management of diabetes mellitus over many years and understanding how it affected them as individuals, did not always translate into easy control of blood glucose levels. Furthermore, the data showed a range of experiences and levels of expertise in diabetes mellitus and how it affected each individual, and the participants with T1DM since childhood who were familiar with its management still described themselves as unstable insofar as their blood glucose levels fluctuated greatly, whereas others seemed to have better control by such things as the use of a syringe pump.

The following quotation from Sheila is a good illustration: ‘Yeah, my blood glucose levels. I think it’s getting them under control so it’s probably about time to do it now . . .’.

Living with diabetes mellitus

When asked about their lifestyle, participants translated this into a focus on diet and exercise. As with blood glucose control, diet, weight control and exercise would have been something with which all people with T1DM were aware. However, in the context of pregnancy, despite their focus in answering the question, it seemed that not all participants considered themselves able to control the outcome by adapting their diet and exercising more. Rani had six children but seemed unable to exercise:

Well I can’t do much of exercise . . . I mean I have got a back problem as well like slipped disc and err exercise, I used to go to the gym and I used to go swimming as well but eh to be honest I don’t do anything now I just . . . too lazy [. . .] I feel weak in myself I just – even now my daughter has gone for a walk and she was telling me to come and I said no I can’t go – I just try to walk to the kitchen and living room.

Rani

She went on to explain:

[Be]cause of my health I sometimes feel dizzy at times, I just feel weak in myself [. . .] so I don’t go out much.

Rani

Lilly, with T1DM, talked about the influence of a dietitian she saw at the hospital when she became pregnant:

Erm . . . she got me thinking about changing from white breads to whole grains and things like that. I used to be a gym bunny erm and then when I changed my job, I broke my arm really badly and changed my job at the same time so I kind of lost track of all that a little bit erm . . . and then . . . I think I started walking, more actively walking and doing . . . just incorporating exercise in my everyday life. Walking to work rather than driving to work and things like that and that was just from encouragement from the hospital . . .

Lilly

Carol, also with T1DM, described the changes she had made:

Erm I gave up smoking about 6 months before I became pregnant, but I’ve been a smoker kind of on and off throughout. Quite a long time. Erm I haven’t drunk at all since I have become pregnant not like not a drop – so no alcohol which is great, erm no caffeine. So yeah, decaff. Everything [. . .] diet not massive ‘cos I do fairly healthy diet anyway. Swimming I’ve always done so I’m carrying on with that. Err I used to cycle but now I don’t cycle ‘cos I’m pregnant. ‘Cos it’s a bit, a bit unsafe.

Carol

Susie, a woman with T2DM who had twins and was 2 months pregnant at the time of interview, disclosed the advice from her midwife to lose weight:

I’m trying to erm lose weight. My midwife told me that I can go to Slimming World, but which I need to speak to her about. [. . .] But I’m also going to do some exercise, and that because I have got lazy, so you know that. My err diet has changed as well. I’m trying not to eat so much fatty food.

Susie

Awareness of the risks associated with pre-existing diabetes mellitus

Being aware of the risks associated with pregnancy for women with diabetes mellitus could be an incentive to attend preconceptual care and to follow the advice received. However, for those who were not aware of the existence of PCC (n = 4), this does not apply. At interview, and to varying degrees, women seemed to be conversant with and cited the risks associated with pregnancy. Shelia was white British and married to an Asian man. She had had T1DM for 12 years and was attending PCC because she was referred by her GP and wanted to get her blood glucose under control before conceiving, as she claimed that she had never had it under control and did not want her baby to ‘get complications’. For her this control was essential as she said ‘Hmm. I don’t know it’s just crucial that you’ve got your sugars under control . . .’.

Lilly, who had T1DM, had one child and was 7.5 months pregnant. She had learned about the risks through preconceptual care:

I didn’t know before preconception. Oh, I had an abundance of leaflets to look at. [. . .] You know these little lives could be deformed just ‘cos you can’t be bothered to look after yourself and you could have done things wrong, couldn’t you? Just ‘cos mummies can’t be bothered [. . .] yeah, and think it’s not going to happen to me. ‘Cos it can and it does otherwise the research would be out there, would it?

Lilly

Although clearly dissatisfied with her experience of PCC as discussed later, Carol, who was 6 months pregnant with her first child, had been diagnosed with T1DM 26 years previously and seemed to be better informed about the potential risks:

Erm, I think I’ve got a higher risk of higher weight birth child due to sugars being higher, erm, possibly a higher stillbirth rate, especially with my age as well, nearly 40. Erm, apart from that, I’m not really sure. Apart from the fact they might push me to have a caesarean [. . .] which I don’t want. [. . .] I know about obviously early formation of the baby and the structure and stuff. And, erm the lower the sugars the better the chance of nothing going wrong there with erm, the heart and stuff like that.

Carol

Sasha, a trained doctor with a 14-year history of T1DM, at the time of interview was not planning to get pregnant but was quite well informed and talked about the risks for pregnancy from T1DM:

Oh risks, so congenital birth defects, things like spinal neural tube defects, erm having heavy [. . .] erm . . . I think that was the main thing that I was worried about, because I have been joking with my friends that I will be having a C-section [caesarean section] for my big baby and then when the baby is born will give me hypoglycaemia, erm and also about increased risk of miscarriage and stillbirth.

Sasha

Stephanie, who had T2DM, stated that her first baby had already experienced complications from diabetes mellitus and was born with hypoglycaemia and had to spend 1 week in the neonatal unit, as she explained:

So, obviously that’s a risk factor and then you’ve also got the risk factor of if the diabetes is not properly controlled during pregnancy then the baby can come out with diabetes themselves . . .

Stephanie

However, despite their awareness of diabetes mellitus and its impact on health and well-being, not all participants were fully aware of the risks associated with diabetes mellitus and pregnancy. Susie, who had T2DM, had limited awareness as this quotation illustrates:

I know the baby will be big. [. . .] [Laughs] It will be a big baby – obviously because the placenta, the . . . Oh, what’s it called, something is not working properly. I don’t know. My mind’s gone blank.

Susie

Despite having expertise in diabetes mellitus and the associated risks at the time of pregnancy and birth, for some women there was a tension between seeing themselves as able to make a difference to outcomes through their actions and being in the hands of a higher power. This might relate to their belief system, and/or fate, which also could be a dominant force in deciding outcomes. In this way, biologically determined medical discourses might conflict with cultural and religious ones. However, this does not necessarily mean that they were mutually exclusive and the domination of such influences could fluctuate.

Aziza was a British Pakistani woman with four children who had been diagnosed with T1DM 23 years previously. She talked about how her second child was expected to be disabled and described what happened:

[E]rm the second, baby number two, my son, with him at his 36 weeks, was he 38 weeks? At his 36 or 38 week scan, before that everything was fine, they said he’s got something called hypoplastic left heart syndrome, that’s when the left side of the heart is unformed [. . .] so er then they sent me to, two people at hospital did the scan said the same thing. As far as he was inside me he was fine, but once he was born he would find it difficult to for – his heart to beat and he would have erm open heart surgery, sent me to another hospital, the specialist they did the scans, same thing. I said I’ve got 2 weeks what are the chances that his heart would form? ‘Cos one side was unformed – they said it’s too late now, if they would have picked it up earlier, terminated the pregnancy.

Really?

Yeah, ’cos the eldest child who has survived is about 6 years old. They don’t make it past that [. . .] anyway I said no I don’t wanna know anything. Those were the 2 difficult weeks of my life. I said no, if there’s a God up there, nothing is going to happen to my baby. Otherwise I’m gonna go away from faith.

After several failed inductions, Aziza’s baby was delivered by caesarean section and, as she explained, there was:

Nothing wrong with him whatsoever! That really did scare me in thinking if they had found out earlier they would have got rid of my baby when there was nothing wrong with him.

Aziza

Although awareness of risks might serve as an incentive to attending PCC for some participants, this was where they first learned about the detail of those risks. The interviews did not reveal a comprehensive understanding of the risks; at least, when asked, most women did not articulate the risks in any detail. The dominant message they seemed to have taken on board was that high blood glucose levels in women with diabetes mellitus can cause complications in pregnancy. Most women who are pregnant and those who attend PCC before pregnancy are prescribed folic acid. The women interviewed did not offer explanations for taking folic acid when asked about risks but there seemed to be recognition of the need to take it. For some there was confusion about how long they should take folic acid before becoming pregnant and some women started taking it only when they knew that they were pregnant. It seemed to be the case that women who received preconceptual advice were prescribed a higher dose of folic acid before becoming pregnant – but this was not possible for women who had not planned to get pregnant and so were referred later and, consequently, started taking folic acid later. The interview data do not support an overt awareness of the increased risk of neural tube defects (or other teratogenic effects) for women with diabetes mellitus in pregnancy. This does not necessarily translate into a lack of understanding on their part, but when invited to talk about risks, this was mentioned by only two participants (both with T1DM): Sasha and Carol.

As stated, the focus of concern for women who attended PCC was on blood glucose control and this is something that will have been part of living with diabetes mellitus for women who had diabetes mellitus, many of whom seemed to struggle with good control and sought extra help and support when they were hoping to get pregnant or in the early stages of pregnancy and recognised the risks associated with high blood glucose.

Lack of awareness

The data showed that the main reason women might not attend PCC was because of a lack of awareness. As illustrated in the section above, the responses from those who attended PCC suggest that discussions with professionals about pregnancy resulted in them being made aware of the necessity of the service. Clearly, the three participants with gestational diabetes mellitus, who were recruited as women with T2DM, were aware of the need to control their diabetes mellitus for subsequent pregnancies.

It is worth noting that for Rani, a British Pakistani woman with T2DM who was 4 months pregnant with her seventh child, there was confusion about her diabetic status, as she reported:

[S]o if you have got diabetes you should go on regular check-ups, it’s been a year or so they’ve took me off the list for diabetes, I’ve . . . and nobody has been calling me in [. . .] and I didn’t know, no blood tests nothing for about a year and a half, then I went back to my GP, and I says I need to referred, either you guys check me or send me back to the diabetic clinic because I didn’t know what’s going on and I’m always sleeping like all the time [. . .] I don’t know what’s going on like, whether my sugar’s high, low or what and, eh, then they referred me back last year I think, last year . . . last year, I think, I went to my GP and they referred me back to the diabetic clinic and then every 3 months I was going there.

Rani

Rani had been diagnosed with gestational diabetes mellitus during her third pregnancy, which resulted in a miscarriage.

Logistics of attendance

Some women talked about the practical issues associated with being able to attend clinics on a regular basis. Clearly, for those in paid work this raised an issue of the need for their employers to be flexible and allow them to attend, but the participants who talked about this told us they adjusted their working hours to suit attendance. In terms of occupational status, seven of the women interviewed were in paid employment. Three described themselves as housewives, one as unemployed and one was a student. Most women mentioned the need to attend fortnightly during pregnancy. (For women with T1DM, when not pregnant, attendance seemed to be 6-monthly.) Lilly, who had T1DM, was pregnant with her second child and worked part-time but found her managers very accommodating – as she told us:

Work’s brilliant, they are really good. They erm, they’d never complain – as long as I provide letter, that that’s where I’m going, they’ve never complained. They’ve never said ‘no’, even with me going every 2 weeks now to the hospital there’s never been any issues. But then maybe it’s because I’m never off sick, my attendance is good and if I can help outside of my normal working hours, I will. And sometimes without being paid. Like I do summer schools as well [. . .] so it swings things in roundabouts there.

Lilly

Some women talked about the different clinics they attended, such as antenatal care and diabetes mellitus care, and having to attend up to three clinics if they had other specialist service requirements. Xena, who had T1DM, one child and was in paid employment, had overcome this by being able to combine visits. As she explained:

I have always made an effort to go to all my diabetes appointments, erm . . . when I was pregnant the . . . there was issues because of the frequency of appointments and also by the end of my pregnancy I was under three different clinic as well. Erm but as soon as I sort of mentioned that I was having issues, people helped me sort of streamline all of the appointments.

Xena

However, she still had to manage different attendances on different days which created problems with managing her job:

So I had to juggle three clinics, was there another one? I can’t remember now. I felt like we should just pitch a tent in the car park and live there really.

Xena

It was also the case that being unable to park or the cost of parking combined with the unpredictably long waits made attendance difficult and sometimes expensive. This was something that several participants mentioned. Hospital parking is not an issue of concern that is confined to women with diabetes mellitus. It affects everyone who has to attend hospital: inpatients, outpatients, visitors and staff. (This is an issue that the NHS has been trying to address for some time.) To overcome this, some women arranged for a lift to the hospital. Their ability to get a lift depended on their social support structure and whether or not they had someone with a car who was able to take them. It can be easy to underestimate the extent to which relatively small practical barriers can impact on attendance.

The two main barriers, ‘lack of awareness’ and ‘practical issues around attending’, were cited as the key reasons for not attending PCC. This is predisposed on PCC comprising visiting a specialist clinic or at least taking some form of action to prepare for pregnancy that reduces the risks associated with diabetes mellitus and pregnancy. The interview data did not reveal the extent to which women took action based on other forms of advice and guidance through such things as websites and social networks. Although the data revealed enablers and constraints, they were difficult to distinguish insofar as there was confusion about the meaning of PCC, where and by whom such care and advice was provided and the point at which it was or was not accessed.

In the next section, the focus is on communication which straddles several dimensions of care but which also offers a perspective that deserves separate treatment.

Communication as care

The theme of communication that emerged from the analysis straddled many aspects of preconceptual care for women with diabetes mellitus. As already stated, most of the participants had been managing their diabetes mellitus for many years and had varying levels of knowledge and experience. Not all of them had been stable in terms of blood glucose control but they did not necessarily see themselves as lacking expertise. In the previous sections in this report on the quality of the relationship between professionals and women with diabetes mellitus, it is clear that the way in which communication was handled was a key factor in the way women valued the relationship of preconceptual care. Here, the examples that follow highlight how not recognising patients as experts in their own condition can serve as a constraint in accessing PCC. Indeed, for some, this resulted in them not using the service.

At the time of interview, Carol was using insulin injections and metformin hydrochloride tablets to control her diabetes mellitus. She had been diagnosed with T1DM 26 years previously, had been attending PCC when planning to get pregnant but did not really value the experience, as she explained:

[I]t was things I already knew, but then that’s just me being sort of arrogant I suppose, they tried to retrain me with carbohydrate counting and stuff which was helpful erm and I needed to do but erm the HbA_1c was too high and they just kept telling me that it was too high and I was like well, I already know it’s too high [laughs] that isn’t particularly helpful [. . .] erm so I didn’t feel that supported, it wasn’t it was, it wasn’t a nurturing thing it was more kind of, I’m not, they weren’t being horrible or anything or negative [. . .] but they were just, it wasn’t that encouraging, I didn’t find so, so I stopped going.

Carol

Carol’s quotation also illustrates the medical focus on blood glucose levels for women wanting to become pregnant. Stephanie had one child and was nearing the end of her pregnancy. She had been diagnosed with T2DM 4 years previously but still experienced frustration and questioned the value of specialist care:

[R]eally frustrating [laughs] ‘cos your sitting there for an hour and a half to 2 hours waiting to be seen by the by the doctors, you eventually get called in, they look at your notes, which has been in my experience, they looked at my notes, the obstetrician said, ‘How are you feeling?’ and I’m like ‘I’m OK.’ ‘How’s baby? Is she moving?’ I’m like, ‘She’s moving, she’s fine.’ ‘OK great!’ So going back to the diabetic doctors, ‘bloods are fine, no problem at all, see you in 2 weeks!’ I’m like I’ve just sat here for 2 hours [. . .] I could have told you that! [laughs].

Stephanie

However, for some women, their expertise was respected. Xena, who had been diagnosed with T1DM 22 years previously, explained:

Yeah, yeah so it’s a shared, I’ve always felt, feel like it’s a shared appointment erm, so I can come to them and say this isn’t happening or that isn’t happening and they can give me some advice and I go oh yeah I should try that, but then I’m, I can be in e-mail contact with them so I have e-mailed the nurses so that I can say this isn’t happening or that is not happening so it’s much more of a two-way process. Whereas I think if you’re a passive patient and you just go because oh no I’ve got to go, you’re not going to get anything out of that kind of appointment.

Xena

For Xena, being an active participant was important and she attributed part of the notion of shared care to being an active partner and not passive. She went on to say:

[. . .] [M]y care felt much more like a conversation, it felt more collaborative. I didn’t go in and was told I should do this, it felt much more like what’s your view, what are you doing, shall we try this? What do you think on it? That kind of conversation.

Xena

However, Xena had a bad experience with the delivery of her first baby when she went to a different hospital for the elective caesarean section. She explained:

So I was in recovery from the minute he was born to about 6 or 7 o’clock in the evening when they moved me onto the ward and then I had some issues with the ward staff as well, so . . . and I don’t really remember much of the Wednesday. I remember a team coming over and saying that they are a diabetes team equivalent, but nobody asked me about my diabetes . . . Erm [. . .] but they had never come across anyone with a pump either.

Really?

No, so so I’ve . . . it was really difficult because at H, all the information had gone to H and they, you know there was an expectation about this lady on a pump but at G they didn’t really know what to do with me and at the end they left me to it, because the control was fine [. . .] and I knew what I was doing ‘cos otherwise they would have put me on a sliding scale and I refused that, I didn’t want that, I wanted to be in control of what was going on and my husband knows how to use the pump . . .

Although Xena was very clear that she wanted to have control over the situation, the quality of her care in labour, according to her, was compromised by the lack of expertise on behalf of the staff at a different hospital.

As with many forms of health and social care, communication is not just about information sharing, but it also forms part of the care. The quality of communication with care givers was a key aspect of the extent to which participants valued the experience of PCC. This quotation from Carol sums up the way in which communication is care:

[. . .] Erm being able to offer flexible times when people can go is very useful especially when you’ve got a full-time job erm not having to miss work to go to stuff, so like later appointments or early morning appointments, that kind of thing helps. Practicalities erm . . . and also the kind of manner of the person that’s dealing with you em so obviously everybody is nice but some people have got more kind of subtle [laughs] approach and it tends to have better effects I think erm so like people that haven’t got diabetes, obviously they know about it but there’s a certain understanding that you probably can’t quite relate to if you haven’t got it. So telling somebody a certain thing is a lot easier than that person actually doing it, so just the way the advice is given and . . . yeah it not being condescending it just being more positive.

Carol

Participants who had developed a strong relationship with their professional carers and had expertise in their diabetes mellitus talked about care as a partnership, as in the illustrative quotations from Xena above. Others expressed mixed views about its value. For some women, the experience was negative and in the following quotation Rani talked about a different type of relationship, in which she was not an equal partner in her care.

When asked about her GP, Rani told us:

. . . well . . . I’m not really happy . . . I just . . . I mean from all the doctors I just like the one lady doctor who really does take care and looks into things . . . but there are . . . one or two doctors that you know if there’s more than one problem you’ve got they don’t . . . they don’t even let you speak, they just tell you to shut it there that’s it . . .

Rani

Continuity of care

The value of PCC was partly interpreted through the relationship with professional carers. However, another aspect of the quality of the relationship was continuity of care. Carol talked about the value of seeing the same doctor, but there was not the same continuity of antenatal care with midwives, as she explained:

Erm midwives, I haven’t really seen any midwives through the hospital and I have not seen the same midwife. I’ve seen a different midwife every time. There are specialist diabetic midwives who I met when I first became pregnant and then I haven’t seen either of them since, which I thought was a bit strange.

Carol

Susie, who had twins and was early in the first trimester of her second pregnancy, claimed that she rarely saw the same person twice:

You know that you don’t see the same people all the time, so you know you do see some of the same faces but you never really see the same person.

Susie

Continuity of care was not just about establishing and maintaining a relationship. Carol saw different practitioners who gave different types of advice:

But yeah seeing the same person definitely helps. I did see one other person on my first appointment who told me different stuff to what the current consultant told, tells me . . .

Hmmm how different?

Erm it was stuff to do with taking tablets, ‘cos sometimes I was taking like . . . six or seven tablets in the morning [. . .] and one of the consultants told me that I should take them at separate times periods and like stall it if you like, so not take them all together in one go and then I told that to the present person that I’m seeing and he said, ‘Oh don’t worry about it, it won’t make much difference’ [laughs]. [. . .] So you know two different sort of ideas but erm . . . yeah.

There are several aspects to recognising that communication is part of care. First, it is important for people with long-term conditions to manage their own care most of the time, and building trust is an important part of enabling them to cope at key and dynamic stages in their life. Second, women are more likely to want to attend clinics when they feel they are treated with respect and dignity. Third, alongside choice and control, continuity of care is a major issue in the evaluation of the effectiveness of prenatal, intrapartum and postnatal care and particularly significant with women with diabetes mellitus. Seeing diabetes mellitus as a complication of pregnancy means that women’s choice and control might be compromised in the interest of reducing risk, leaving continuity of care as the single most important aspect.