Epidemiology of GDM

GDM is defined as any degree of glucose intolerance with onset or first recognition during pregnancy. The prevalence of GDM ranges from 2% to 13%. Demographic factors influencing the prevalence include maternal age, race/ethnicity, parity, body habitus, hypertension and smoking status. Clinical factors include the glucose loading dose, the blood component assayed (venous whole blood, capillary blood or plasma), the threshold values selected to define abnormal, the number of these values that need be equalled or exceeded to identify the presence of GDM, when during gestation the test is administered, if a screening test is administered to decide whether or not glucose tolerance testing is required and the proportion of the population that is screened. GDM is a growing public health problem with genetic, environmental and social determinants. Its prevalence has increased by 10–100% over the past 20 years, with greater increases observed among women from racial/ethnic minority groups. These increases have been reported in populations from the United States, Canada and Australia. Women who develop GDM during one pregnancy are at increased risk for GDM in subsequent pregnancies, and are at increased risk for developing T2DM in the years after delivery. In addition, infants exposed to GDM in utero are at increased risk for obesity and future development of T2DM and metabolic syndrome. The International Association for Diabetes in Pregnancy Study Groups (IADPSG) recently published recommendations for the diagnosis of GDM using a 75-g oral glucose tolerance test with the requirement that only one of three values (fasting, 1 or 2 h) be met or exceeded to confer a diagnosis of GDM. The lower threshold values and the need for only one abnormal value to confer a diagnosis of GDM compared with many previous guidelines that required at least two abnormal values would result in an increase in the prevalence of GDM.

Studies conducted in the US have consistently demonstrated that women of Native American, Hispanic and Asian race/ethnicity are at greater risk for developing GDM than are non-Hispanic white women, while the GDM prevalence for African-American women has been reported as being about the same or higher than non-Hispanic white women. In several studies of diverse populations, women of Asian and Pacific Islander race/ethnicity have shown the highest prevalence of GDM. Several studies conducted in Canada have noted high rates of GDM among Cree First Nation women, with GDM prevalence ranging from 8.1–12.8%, depending on the year and region studied. In a study that compared Cree women to other women in the province of Manitoba, 8.1% of Cree women had GDM in 2004 compared with 3.0% of non-First Nation women. In Australia, GDM prevalence is higher in Aboriginal women than in non-Aboriginal women and is higher for women born in China or India than for those born in Europe or North Africa. In Europe, GDM prevalence is higher in Asian women than in women of European descent. Other risk factors for GDM include increasing maternal age, previous history of GDM, first-degree relative with T2DM, maternal metabolic syndrome, insulin resistance and maternal overweight and obesity.

Epidemiology of diabetes mellitus among pregnant women

Several studies have reported increases in the prevalence of women with pregestational diabetes mellitus among women giving birth from large population-based samples in North America and Europe. Lawrence and colleagues examined the prevalence of diabetes among women who delivered from 1999 through 2005 in a large managed health-care population on the west coast of the US. They reported that diabetes mellitus in pregnancy rose from an age- and race/ethnicity-adjusted prevalence of 0.8% in 1999 to 1.8% in 2005 ( P _trend < 0.001). Pregestational diabetes was most common among women from racial and ethnic minority groups, with African-American, Hispanic and Asian/Pacific-Islander women having a greater prevalence of pregestational diabetes than non-Hispanic white women do. The prevalence also increased significantly with maternal age. Feig and colleagues examined the prevalence of pregestational diabetes among women giving birth in hospitals in the province of Ontario in Canada from 1996 through 2001, and reported that the proportion of deliveries to women with diabetes mellitus increased steadily from 0.8% in 1996 to 1.2% in 2001 ( P _trend < 0.001). Neither of these studies reported the distribution of diabetes type among women with diabetes mellitus in their cohorts; Lawrence and colleagues noted that the fifth digit of the International Classification of Diseases, 9th Revision (ICD-9) codes for type of diabetes yielded inconsistent results and thus were not reported.

Albrecht and colleagues examined trends in delivery hospitalisations in the US from 1994 through 2004. Using a hierarchical approach to determine diabetes type when the ICD-9 codes in the discharge records were inconsistent, they reported a substantial increase in the rates of both T1DM and T2DM during this period. T1DM rose from 2.4 per 1000 in 1994 to 3.3 per 1000 in 2004, yielding a 37.5% increase, while T2DM rose from 0.9 per 1000 births to 4.2 per 1000 births, representing a 366.7% increase during the 10-year period. In 2004, the prevalence of T2DM exceeded that of T1DM among women giving birth in the US.

Several studies from Europe have reported an increase in pregestational diabetes. In Northern England, the prevalence of pregestational diabetes increased from 3.1 per 1000 births in 1996–98 to 4.7 per 1000 in 2002–04 ( P _trend < 0.0001). Using data from the Norway Medical Birth Registry, the prevalence of pregestational diabetes among immigrant women born in South Asia and North Africa was 8.9/1000 births, more than twice the prevalence among ethnic Norwegians (3.6/1000) among births from 1988 through 1998. The Confidential Enquiry into Maternal and Child Health (CEMACH) diabetes study reported that the prevalence of diabetes during pregnancy was 3.8/1000 or one in every 264 births in England, Wales and Northern Ireland in 2002–03. T1DM was present in 1 in every 364 births while T2DM occurred in 1 in every 955 births. T2DM accounted for 27.6% of pregnancies to women with T1DM or T2DM in these countries in 2002–03, with the proportion ranging from 13.3% in Wales to 44.5% in London. They reported that half of the women with T2DM were from ethnic minority groups and 45% lived in low-income areas where there may be less availability and access to health-care services.

Perceptions of pregnant women with GDM

While studies have examined women’s health ratings and perceptions of risk of diabetes among women with a history of GDM in the years after diagnosis, and also have reported on the rates and correlates of post-partum glucose testing, fewer have examined women’s perceptions of GDM during pregnancy. A summary of the findings from seven studies from Australia, Sweden and the US that focussed specifically on the issues of women’s perception during or shortly after a GDM pregnancy follows.

Rumbold and Crowther surveyed 212 pregnant women in an Australian teaching hospital before and after screening for GDM and later in pregnancy. After being informed of their results, women who screened positive for GDM had lower health perceptions, were less likely to rate their health as much better than a year ago and were more likely to rate their health as ‘fair’ versus ‘good’ or ‘excellent’ than women with a negative screening test for GDM. These authors did not observe any differences in level of anxiety, depression or concerns women had about the health of their babies. Following screening, there was no difference in the proportion of women, who would request glucose screening during future pregnancies depending on their glucose test results. In another Australian study, Daniells and colleagues examined anxiety levels of 50 women diagnosed with GDM compared with 50 glucose-tolerant women at similar stages of pregnancy using the Mental Health Inventory (MHI-5) and the Speilberger State-Trait Anxiety Inventory, which were completed at the beginning of the third trimester, antepartum and 6 weeks post-partum. Women with GDM had a higher level of state but not trait anxiety and higher scores on the MHI-5 at the beginning of the third trimester (after learning their screening results) than did women without GDM. No differences were observed between the two groups before delivery and in the post-partum period. Women in both groups were glad they had been screened for GDM, and indicated that they wished to be tested in future pregnancies.

Sjögren and colleagues surveyed Swedish women with GDM ( n = 113) and controls ( n = 226), and reported that women with GDM reported significantly less well-being, psychic health and vigour during pregnancy and a less positive pregnancy experience than did the controls. Women with GDM also recalled more worry about health and more physical health problems during pregnancy, but were more likely to keep to a healthier diet after pregnancy than did controls. They concluded that GDM negatively influenced the women’s perception of their health, but motivated them to adopt a healthier lifestyle.

In a different Swedish study, Hjelm and colleagues explored the beliefs about health, illness and health care among 23 women with GDM receiving care in two hospitals, based on whether they received their care in a specialist diabetes clinic ( n = 13) or a specialist maternity clinic ( n = 10) using qualitative interviews. All of the women reported a delay in receiving information about GDM after diagnosis. Women treated in the diabetes clinic were more likely to report fear about developing T2DM and to identify the cause of their GDM as hereditary, while women in the maternity clinic believed that GDM was caused by a variety of factors, considered it to be a transient condition and had varied beliefs, from awareness of future risk to not having thought about it at all. They were also less likely to consider the conditions as serious as women treated in the diabetes clinic were. They concluded that women’s beliefs about GDM differed, based on the model of care, although it should be noted there were some differences between the characteristics of women attending the two clinics.

As a follow-up to this study, Hjelm and colleagues also explored the beliefs about health and illness among 13 Swedish-born women and 14 Middle-Eastern-born women at 3 months post-partum. Women perceived health as well-being and being able to care for their babies. Swedish women felt that health-care professionals were no longer important to their health after delivery, whereas Middle-Eastern women still perceived them to be important sources of health advice in the post-partum period. Most women reported that they no longer had any concerns related to GDM and women from both backgrounds reported behavioural changes, such as increased physical activity and dietary changes, due to the GDM diagnosis.

Lawson and Rajaram conducted semi-structured interviews with 17 women within 1 week of their first GDM diagnosis and at 6 weeks post-partum from a high-risk maternity clinic in Kentucky to obtain detailed information about the ‘psychosocial consequences’ of GDM. Women experienced fear, anxiety and depression after the diagnosis, reporting that they were worried about the health of the baby. They tended to express disbelief about the diagnosis due to the absence of physical symptoms. Women, who had symptomatic complications in a previous pregnancy, more frequently reported disbelief than did women, who had not had previous pregnancies or previous symptomatic complications. Their negative perception of having GDM, coupled with the need for home glucose monitoring, dietary restrictions and insulin injections (when prescribed), signified that their pregnancy was not ‘normal’. Women also reported that GDM constituted another significant stressor in their lives. In another US study conducted in an urban environment, Persily and colleagues surveyed 29 women from a perinatal centre in Philadelphia from diagnosis of GDM through delivery. Scores on the Impact of Event scale were higher for women with GDM when compared with normative population values for the scale. Women, who perceived that the diagnosis and treatment of GDM had more impact on their lives, were less likely to be adherent to blood glucose self-monitoring, but there was no association between the score and the global treatment adherence measure.

Perceptions of pregnant women with pregestational diabetes mellitus

While studies have reported on the lack of preparedness for pregnancy, poor glycaemic control at the time of conception and lack of intendedness of pregnancies among women with diabetes, few have explored the ‘diabetic pregnancy’ from the woman’s point of view, with most articles focussed on the viewpoint of health-care providers and/or researchers. Most studies in the social science and biomedical literature are based on in-depth qualitative interviews with women during their pregnancies with sample sizes ranging from 7 to 85 women per study. A summary of the findings from seven studies from Sweden, the United Kingdom, Australia and the US that focussed specifically on the issues of women’s perception during or shortly after a pregnancy with T1DM or T2DM follows.

Berg and Honkasolo conducted a qualitative study in Sweden that explored the perceptions of 14 pregnant women with IDDM during the different trimesters of their pregnancies. The authors reported that the women perceived that they were “being controlled by blood glucose levels for the child’s sake.” Themes including a loss of control, the perception of having an unwell or “risky body” and constant worry, pressure and self-blame about their responsibility for the health of their unborn child emerged from the interviews. In an extension of this study, which included 18 pregnant women, Berg described the essential structure of her findings as women needing “to master or be enslaved” by their pregnancy with diabetes. Women perceived that the need to constantly monitor their blood glucose during their pregnancy resulted in more attention being paid to their diabetes than to their baby and pregnancy. They viewed their health-care providers as a supportive resource or as a controlling factor during their pregnancy. While women need the health-care providers’ expertise in both childbearing and diabetes to provide knowledge, information and coaching in relation to their individual needs to provide the foundation for their sense of control, the opposite occurred when women perceive that these professionals demanded the right to control and dictate their behaviour. Similarly, relatives, including their parents and the baby’s father as well as employers and colleagues, were perceived as either providing support or increasing the pressure on them during their pregnancies. Berg also reported that an individual woman’s experiences of the challenges and management of her diabetes during pregnancy was dependent on her identity, attitude and resources that included both health professionals and her social environment.

Griffiths and colleagues explored the perceptions of 15 women from clinics in the West Midlands of the United Kingdom with T1DM when they were 20–30 weeks pregnant. Before their first prenatal visit, some women felt they did not need additional advice from health professionals, as they were experienced in managing their diabetes. This was particularly common among women who had a previous successful pregnancy. Women who sought advice early in pregnancy tended to go to their usual health professional, their general practitioner (GP), the nurse in the GP practice with expertise in diabetes or a diabetes nurse specialist. Those who could recall receiving advice described being reassured to continue with what they were already doing for their diabetes management. All three of the women who described receiving preconception counselling talked about the fear and anxiety that they experienced and that, after the counselling, they found it difficult to make the decision to become pregnant. The authors pointed out that just over half of the pregnancies occurred after women had taken “positive steps” to become pregnant, which they characterised as discussing becoming pregnant with their partner, discontinuing the use of oral contraceptives, deciding not to re-initiate contraception, undergoing fertility treatment and paying more careful attention to their diabetes in anticipation of pregnancy. Among women with previous pregnancies, the authors report that their intentions to become pregnant, life circumstances and outcomes varied significantly during each pregnancy.

Lavender and colleagues explored the experiences and perceptions of 22 Caucasian British and Southeast Asian women with T1DM ( n = 15) or T2DM ( n = 7) in three hospital-based clinics in North West England. Employing focus groups and one-on-one interviews, they gathered information from four nulligravid women, four women with at least one previous pregnancy who were not pregnant at the time of the interview and 14 who were pregnant at the time of the interview. They found that three main themes emerged from their interviews: relinquishing personal control, pregnancy overshadowed by diabetes and haphazard preconception care. Lack of personal control was characterised by relinquishing control of their lives to a system of care that disrupted their lives due to frequent health-care encounters but accepting the need to give their control over to health-care professionals for the benefit of their baby. Women expressed disappointment that the focus of their prenatal encounters was more on their diabetes than their pregnancies and babies. Women were more likely to have received preconception care if they were referred by their GP or were seeking infertility treatment. Women tended to not seek preconception care due to the inconvenience or due to the need to disclose health information to obtain time off from work. One woman reported that she found attending a preconception clinic intimidating and expressed frustration at being told repeatedly that her blood sugar was not low enough yet.

Holing and colleagues studied 85 women with diabetes in the 6 months after delivery to explore why women with diabetes generally do not plan their pregnancies. Using interviews, structured questionnaires and medical record review, they compared women with planned and unplanned pregnancies from Washington State. The authors defined a planned (diabetic) pregnancy as one in which the woman reported that she desired to become pregnant before conception, stopped using or did not use contraception so that she could become pregnant and for which she attempted to achieve good glycaemic control before pregnancy. Of the women in their study, 41% planned their pregnancy and 59% did not. Women who planned their pregnancies had a significantly lower haemoglobin A1C at their first prenatal visits compared with women who did not ( p = 0.004). Of the women with unplanned pregnancies, 10% desired pregnancy but made no effort to improve glycaemic control, 60% had no conscious intention to conceive but used contraception <50% of the time and 30% used contraception most or all of the time. Only 30% of women with unplanned pregnancies were aware that preconception blood glucose control reduced the risk of birth defects compared with 83% of women with planned pregnancies. Another key finding was that 75% of women who planned their pregnancy felt that they received reassuring and encouraging advice from health care providers, and were much more likely to describe these relationships as positive, while only 14% of women with unplanned pregnancies reported receiving positive messages from their providers and less than a third of the latter described these relationships as positive. These women reported that they received mixed messages, that messages were not encouraging or they were advised not to become pregnant.

King and colleagues explored the perceptions of seven women “juggling T1DM and pregnancy” who lived in rural Australia. Blood glucose management was the central theme of their interview in relation to pregnancy preparation, their experience during pregnancy and quality of and access to health services. The women commented on the stress, discipline and hard work required to reduce and then maintain their blood glucose values in the range that would confer minimal risk to the foetus and themselves. Women recalled hearing messages about pregnancy when they were young girls, including that they may never be able to have children, that they should have their children early and that they would need to go to a major city to receive their care. Women reported that achieving better glycaemic control before pregnancy was a key aspect of their preparation for pregnancy, and they reported doing this by exercising more regularly and eating more healthily. Women spoke of changing or quitting their jobs to achieve this goal of better glycaemic control. In relation to obtaining information about diabetes during pregnancy, some women reported that they felt their health professionals, particularly midwives, needed more information. All of the women felt that information was scarce and relied on international websites for their information. Women reported that they had no access to endocrinologists in their local areas, and had to travel long distances to receive health care from specialists.

While not mentioned in the qualitative studies reviewed, the CEMACH inquiry into caring for babies of diabetic mothers after delivery pointed out the need for women to be offered skin-to-skin contact, and to be encouraged to breastfeed their infants soon after delivery. The separation of the mother and the baby due to neonatal intensive care unit admissions of the infants of diabetic mothers, which the report deemed avoidable about half the time, is a barrier to both mother–infant bonding and breastfeeding for women with diabetes.

Perceptions of pregnant women with GDM

While studies have examined women’s health ratings and perceptions of risk of diabetes among women with a history of GDM in the years after diagnosis, and also have reported on the rates and correlates of post-partum glucose testing, fewer have examined women’s perceptions of GDM during pregnancy. A summary of the findings from seven studies from Australia, Sweden and the US that focussed specifically on the issues of women’s perception during or shortly after a GDM pregnancy follows.

Rumbold and Crowther surveyed 212 pregnant women in an Australian teaching hospital before and after screening for GDM and later in pregnancy. After being informed of their results, women who screened positive for GDM had lower health perceptions, were less likely to rate their health as much better than a year ago and were more likely to rate their health as ‘fair’ versus ‘good’ or ‘excellent’ than women with a negative screening test for GDM. These authors did not observe any differences in level of anxiety, depression or concerns women had about the health of their babies. Following screening, there was no difference in the proportion of women, who would request glucose screening during future pregnancies depending on their glucose test results. In another Australian study, Daniells and colleagues examined anxiety levels of 50 women diagnosed with GDM compared with 50 glucose-tolerant women at similar stages of pregnancy using the Mental Health Inventory (MHI-5) and the Speilberger State-Trait Anxiety Inventory, which were completed at the beginning of the third trimester, antepartum and 6 weeks post-partum. Women with GDM had a higher level of state but not trait anxiety and higher scores on the MHI-5 at the beginning of the third trimester (after learning their screening results) than did women without GDM. No differences were observed between the two groups before delivery and in the post-partum period. Women in both groups were glad they had been screened for GDM, and indicated that they wished to be tested in future pregnancies.

Sjögren and colleagues surveyed Swedish women with GDM ( n = 113) and controls ( n = 226), and reported that women with GDM reported significantly less well-being, psychic health and vigour during pregnancy and a less positive pregnancy experience than did the controls. Women with GDM also recalled more worry about health and more physical health problems during pregnancy, but were more likely to keep to a healthier diet after pregnancy than did controls. They concluded that GDM negatively influenced the women’s perception of their health, but motivated them to adopt a healthier lifestyle.

In a different Swedish study, Hjelm and colleagues explored the beliefs about health, illness and health care among 23 women with GDM receiving care in two hospitals, based on whether they received their care in a specialist diabetes clinic ( n = 13) or a specialist maternity clinic ( n = 10) using qualitative interviews. All of the women reported a delay in receiving information about GDM after diagnosis. Women treated in the diabetes clinic were more likely to report fear about developing T2DM and to identify the cause of their GDM as hereditary, while women in the maternity clinic believed that GDM was caused by a variety of factors, considered it to be a transient condition and had varied beliefs, from awareness of future risk to not having thought about it at all. They were also less likely to consider the conditions as serious as women treated in the diabetes clinic were. They concluded that women’s beliefs about GDM differed, based on the model of care, although it should be noted there were some differences between the characteristics of women attending the two clinics.

As a follow-up to this study, Hjelm and colleagues also explored the beliefs about health and illness among 13 Swedish-born women and 14 Middle-Eastern-born women at 3 months post-partum. Women perceived health as well-being and being able to care for their babies. Swedish women felt that health-care professionals were no longer important to their health after delivery, whereas Middle-Eastern women still perceived them to be important sources of health advice in the post-partum period. Most women reported that they no longer had any concerns related to GDM and women from both backgrounds reported behavioural changes, such as increased physical activity and dietary changes, due to the GDM diagnosis.

Lawson and Rajaram conducted semi-structured interviews with 17 women within 1 week of their first GDM diagnosis and at 6 weeks post-partum from a high-risk maternity clinic in Kentucky to obtain detailed information about the ‘psychosocial consequences’ of GDM. Women experienced fear, anxiety and depression after the diagnosis, reporting that they were worried about the health of the baby. They tended to express disbelief about the diagnosis due to the absence of physical symptoms. Women, who had symptomatic complications in a previous pregnancy, more frequently reported disbelief than did women, who had not had previous pregnancies or previous symptomatic complications. Their negative perception of having GDM, coupled with the need for home glucose monitoring, dietary restrictions and insulin injections (when prescribed), signified that their pregnancy was not ‘normal’. Women also reported that GDM constituted another significant stressor in their lives. In another US study conducted in an urban environment, Persily and colleagues surveyed 29 women from a perinatal centre in Philadelphia from diagnosis of GDM through delivery. Scores on the Impact of Event scale were higher for women with GDM when compared with normative population values for the scale. Women, who perceived that the diagnosis and treatment of GDM had more impact on their lives, were less likely to be adherent to blood glucose self-monitoring, but there was no association between the score and the global treatment adherence measure.

Perceptions of pregnant women with pregestational diabetes mellitus

While studies have reported on the lack of preparedness for pregnancy, poor glycaemic control at the time of conception and lack of intendedness of pregnancies among women with diabetes, few have explored the ‘diabetic pregnancy’ from the woman’s point of view, with most articles focussed on the viewpoint of health-care providers and/or researchers. Most studies in the social science and biomedical literature are based on in-depth qualitative interviews with women during their pregnancies with sample sizes ranging from 7 to 85 women per study. A summary of the findings from seven studies from Sweden, the United Kingdom, Australia and the US that focussed specifically on the issues of women’s perception during or shortly after a pregnancy with T1DM or T2DM follows.

Berg and Honkasolo conducted a qualitative study in Sweden that explored the perceptions of 14 pregnant women with IDDM during the different trimesters of their pregnancies. The authors reported that the women perceived that they were “being controlled by blood glucose levels for the child’s sake.” Themes including a loss of control, the perception of having an unwell or “risky body” and constant worry, pressure and self-blame about their responsibility for the health of their unborn child emerged from the interviews. In an extension of this study, which included 18 pregnant women, Berg described the essential structure of her findings as women needing “to master or be enslaved” by their pregnancy with diabetes. Women perceived that the need to constantly monitor their blood glucose during their pregnancy resulted in more attention being paid to their diabetes than to their baby and pregnancy. They viewed their health-care providers as a supportive resource or as a controlling factor during their pregnancy. While women need the health-care providers’ expertise in both childbearing and diabetes to provide knowledge, information and coaching in relation to their individual needs to provide the foundation for their sense of control, the opposite occurred when women perceive that these professionals demanded the right to control and dictate their behaviour. Similarly, relatives, including their parents and the baby’s father as well as employers and colleagues, were perceived as either providing support or increasing the pressure on them during their pregnancies. Berg also reported that an individual woman’s experiences of the challenges and management of her diabetes during pregnancy was dependent on her identity, attitude and resources that included both health professionals and her social environment.

Griffiths and colleagues explored the perceptions of 15 women from clinics in the West Midlands of the United Kingdom with T1DM when they were 20–30 weeks pregnant. Before their first prenatal visit, some women felt they did not need additional advice from health professionals, as they were experienced in managing their diabetes. This was particularly common among women who had a previous successful pregnancy. Women who sought advice early in pregnancy tended to go to their usual health professional, their general practitioner (GP), the nurse in the GP practice with expertise in diabetes or a diabetes nurse specialist. Those who could recall receiving advice described being reassured to continue with what they were already doing for their diabetes management. All three of the women who described receiving preconception counselling talked about the fear and anxiety that they experienced and that, after the counselling, they found it difficult to make the decision to become pregnant. The authors pointed out that just over half of the pregnancies occurred after women had taken “positive steps” to become pregnant, which they characterised as discussing becoming pregnant with their partner, discontinuing the use of oral contraceptives, deciding not to re-initiate contraception, undergoing fertility treatment and paying more careful attention to their diabetes in anticipation of pregnancy. Among women with previous pregnancies, the authors report that their intentions to become pregnant, life circumstances and outcomes varied significantly during each pregnancy.

Lavender and colleagues explored the experiences and perceptions of 22 Caucasian British and Southeast Asian women with T1DM ( n = 15) or T2DM ( n = 7) in three hospital-based clinics in North West England. Employing focus groups and one-on-one interviews, they gathered information from four nulligravid women, four women with at least one previous pregnancy who were not pregnant at the time of the interview and 14 who were pregnant at the time of the interview. They found that three main themes emerged from their interviews: relinquishing personal control, pregnancy overshadowed by diabetes and haphazard preconception care. Lack of personal control was characterised by relinquishing control of their lives to a system of care that disrupted their lives due to frequent health-care encounters but accepting the need to give their control over to health-care professionals for the benefit of their baby. Women expressed disappointment that the focus of their prenatal encounters was more on their diabetes than their pregnancies and babies. Women were more likely to have received preconception care if they were referred by their GP or were seeking infertility treatment. Women tended to not seek preconception care due to the inconvenience or due to the need to disclose health information to obtain time off from work. One woman reported that she found attending a preconception clinic intimidating and expressed frustration at being told repeatedly that her blood sugar was not low enough yet.

Holing and colleagues studied 85 women with diabetes in the 6 months after delivery to explore why women with diabetes generally do not plan their pregnancies. Using interviews, structured questionnaires and medical record review, they compared women with planned and unplanned pregnancies from Washington State. The authors defined a planned (diabetic) pregnancy as one in which the woman reported that she desired to become pregnant before conception, stopped using or did not use contraception so that she could become pregnant and for which she attempted to achieve good glycaemic control before pregnancy. Of the women in their study, 41% planned their pregnancy and 59% did not. Women who planned their pregnancies had a significantly lower haemoglobin A1C at their first prenatal visits compared with women who did not ( p = 0.004). Of the women with unplanned pregnancies, 10% desired pregnancy but made no effort to improve glycaemic control, 60% had no conscious intention to conceive but used contraception <50% of the time and 30% used contraception most or all of the time. Only 30% of women with unplanned pregnancies were aware that preconception blood glucose control reduced the risk of birth defects compared with 83% of women with planned pregnancies. Another key finding was that 75% of women who planned their pregnancy felt that they received reassuring and encouraging advice from health care providers, and were much more likely to describe these relationships as positive, while only 14% of women with unplanned pregnancies reported receiving positive messages from their providers and less than a third of the latter described these relationships as positive. These women reported that they received mixed messages, that messages were not encouraging or they were advised not to become pregnant.

King and colleagues explored the perceptions of seven women “juggling T1DM and pregnancy” who lived in rural Australia. Blood glucose management was the central theme of their interview in relation to pregnancy preparation, their experience during pregnancy and quality of and access to health services. The women commented on the stress, discipline and hard work required to reduce and then maintain their blood glucose values in the range that would confer minimal risk to the foetus and themselves. Women recalled hearing messages about pregnancy when they were young girls, including that they may never be able to have children, that they should have their children early and that they would need to go to a major city to receive their care. Women reported that achieving better glycaemic control before pregnancy was a key aspect of their preparation for pregnancy, and they reported doing this by exercising more regularly and eating more healthily. Women spoke of changing or quitting their jobs to achieve this goal of better glycaemic control. In relation to obtaining information about diabetes during pregnancy, some women reported that they felt their health professionals, particularly midwives, needed more information. All of the women felt that information was scarce and relied on international websites for their information. Women reported that they had no access to endocrinologists in their local areas, and had to travel long distances to receive health care from specialists.

While not mentioned in the qualitative studies reviewed, the CEMACH inquiry into caring for babies of diabetic mothers after delivery pointed out the need for women to be offered skin-to-skin contact, and to be encouraged to breastfeed their infants soon after delivery. The separation of the mother and the baby due to neonatal intensive care unit admissions of the infants of diabetic mothers, which the report deemed avoidable about half the time, is a barrier to both mother–infant bonding and breastfeeding for women with diabetes.