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Perceptions Among Women With Gestational Diabetes Judith Parsons, Khalida Ismail, Stephanie Amiel and Angus Forbes Qual Health Res published online 12 March 2014 DOI: 10.1177/1049732314524636 The online version of this article can be found at: http://qhr.sagepub.com/content/early/2014/03/10/1049732314524636 A more recent version of this article was published on - Mar 28, 2014

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QHRXXX10.1177/1049732314524636Qualitative Health ResearchParsons et al.

Evidence for Practice

Perceptions Among Women With Gestational Diabetes

Qualitative Health Research 1­–11 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314524636 qhr.sagepub.com

Judith Parsons1, Khalida Ismail1, Stephanie Amiel1, and Angus Forbes1

Abstract Women with gestational diabetes are at high risk of developing type 2 diabetes, which could be prevented or delayed by lifestyle modification. Lifestyle interventions need to take into account the specific situation of women with gestational diabetes. We aimed to gain a deeper understanding of women’s experiences of gestational diabetes, their diabetes risk perceptions, and their views on type 2 diabetes prevention, to inform future lifestyle interventions. We conducted a metasynthesis that included 16 qualitative studies and identified 11 themes. Factors that require consideration when developing a type 2 diabetes prevention intervention in this population include addressing the emotional impact of gestational diabetes; providing women with clear and timely information about future diabetes risk; and offering an intervention that fits with women’s multiple roles as caregivers, workers, and patients, and focuses on the health of the whole family. Keywords behavior change; diabetes; illness and disease, prevention; lived experience; meta-ethnography; metasynthesis; postpartum care; pregnancy, high-risk Gestational diabetes mellitus (GDM) affects between 2% and 7.5% of all pregnancies, a number that is increasing (Ferrara, 2007). GDM is associated with adverse fetal, infant, and maternal pregnancy outcomes (Catalano et al., 2012), and although GDM often resolves after delivery, women with the condition have an increased risk of future episodes of GDM (Kim, Berger, & Chamany, 2007) and of developing type 2 diabetes mellitus (T2DM) compared to women with normoglycemic pregnancies (Bellamy, Casas, Hingorani, & Williams, 2009; Hanna & Peters, 2002). In addition, there is growing evidence that diabetes in pregnancy has a programming effect on the longterm metabolic health of the offspring (Dabelea, Knowler, & Pettitt, 2000; Krishnaveni et al., 2010). GDM therefore offers a window of opportunity to address the T2DM epidemic. Although a number of studies have shown that T2DM can be prevented or delayed in populations of high-risk people with impaired glucose regulation through lifestyle modification (Knowler et al., 2002; Tuomilehto et al., 2001), only a few randomized controlled trials have focused on women with GDM, most of which were pilot studies (Cheung, Smith, van der Ploeg, Cinnadaio, & Bauman, 2011; Ferrara et al., 2011; Kim, Draska, Hess, Wilson, & Richardson, 2012; Ratner et al., 2008). Authors reported difficulty in recruiting and retaining participants to lifestyle programs (Cheung et al., 2011; Kim et al.,

2012), indicating that improvements are needed to engage women with GDM. Other research has shown that mothers of young infants experience barriers to interventions that do not take into account their child-rearing role (Østbye et al., 2009). Increasing understanding of the experiences, beliefs, and perceptions of women with GDM is imperative to designing an effective T2DM prevention intervention for this high-risk group. Synthesis of existing qualitative research can lead to the achievement of higher analytic goals and allow for greater generalizability than isolated qualitative studies (Sandelowski, Docherty, & Emden, 1997). Therefore, we aimed to conduct a metasynthesis of existing qualitative studies to develop an increased understanding of women’s experiences of GDM, their diabetes risk perceptions, and their views on diabetes prevention. We undertook this analysis to help identify important factors that might contribute to the development of future interventions to prevent or delay T2DM in women with GDM. 1

King’s College London, London, United Kingdom

Corresponding Author: Judith Parsons, Florence Nightingale School of Nursing and Midwifery, King’s College London, James Clerk Maxwell Bldg, 57 Waterloo Rd, London SE1 8WA, United Kingdom. Email: [email protected]

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Methods We undertook a systematic search of qualitative literature and then conducted an interpretive synthesis. As described by Sandelowski et al. (1997), we synthesized studies by different investigators in a related field, with the underlying rationale that a synthesis will produce knowledge that is not simply the sum of the individual studies (Campbell et al., 2003). We conducted the synthesis in three phases: Phase 1, search and study selection; Phase 2, critical appraisal; and Phase 3, synthesis. In the synthesis, we addressed the following questions: What are women’s experiences of GDM? What are the perceptions of women with GDM on their risk for developing future diabetes? What are women’s views on the prevention of future diabetes?

Phase 1. Search and Study Selection We conducted electronic searches of PsycINFO and MEDLINE in May 2012 with the support of an information technologist. We used the following search terms: gestational diabetes, diabetes in pregnancy (and related terms); qualitative research, ethnography, hermeneutics, interviews, focus groups (and related terms); and maternal experience, risk perception, health behavior, patient satisfaction, beliefs about health, patient perspective, patient perception, attitude to health (and related terms). We also undertook citation searches from key references. We screened titles and abstracts for relevance and obtained full text for those articles that met the following inclusion criteria: (a) participants had a current or previous diagnosis of GDM at any time point; (b) articles were published between 1990 and 2012; (c) articles were available in English; (d) authors used qualitative methodology for data collection and analysis; and (e) the study included an examination of women’s experiences of GDM, perspectives on future diabetes risk, or views on diabetes prevention. If it was not clear whether articles met these inclusion criteria, we obtained the full text. We excluded studies that did not meet the inclusion criteria. We did not exclude mixed-method studies, however, provided the qualitative research met the above criteria and formed a substantial element of the study.

Phase 2. Critical Appraisal There is no widespread consensus on what constitutes good-quality qualitative research (Sandelowski et al., 1997), and therefore no consensus on what criteria should be used to assess it (Atkins et al., 2008). We decided to use a simple tool to assess articles, but take the inclusive approach put forward by Sandelowski et al. and not

exclude articles on the basis of quality. We used the Critical Appraisal Skills Programme (CASP, 2010) qualitative research appraisal tool and awarded a score of 0 (if the question criteria were not adequately addressed in the article) or 1 (if the question criteria were adequately addressed) for 10 questions relating to research design, data collection and analysis, and research value.

Phase 3. Synthesis We extracted data from all included articles and entered them into a data extraction form. This form recorded key information about the study setting, research question, aims, theoretical approach, methodology, sampling strategy, sample characteristics, and conclusions of the study. We then entered the results sections from the articles into NVivo (Qualitative Solutions Research International, 2010) and then read and coded them under themes. A subsection of the articles was coded by two reviewers (Forbes and Parsons) for independent assessment and verification of interpretation. Following the process outlined by Britten et al. (2002), we entered these themes into a table as follows: firstorder constructs (participants’ views and experiences), second-order constructs (the authors’ interpretations of participants’ views and experiences), and third-order constructs (our synthesis of interpretations). The studies were translated into each other through the process of reciprocal and refutational translation proposed by Noblit and Hare (1988), where common themes were grouped together and continuously refined by merging and collapsing them. We also noted any incongruity between themes. First-order constructs were used as evidence to support second-order constructs, and in their absence, second-order constructs were excluded from the analysis. Themes were organized into three groups (related to the review questions): (a) women’s experiences of GDM, (b) women’s perceptions of future diabetes risk, and (c) women’s views on the prevention of future diabetes.

Findings After removing duplicates, 1,631 titles and abstracts were identified through the initial search, and an additional 34 articles identified through citations. Abstracts were reviewed for these 1,665 articles, of which 1,611 were excluded for clearly not meeting the inclusion criteria. Full-text manuscripts were fully appraised for the remaining 54 articles, of which 18 articles relating to 16 studies met the inclusion criteria. The reasons for exclusion are shown in Figure S1 (available at QHR.sagepub.com/supplemental). Scores awarded for the quality of each included study are shown in Table S1 (available at QHR .sagepub.com/supplemental).

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Overview of Included Studies Studies were conducted between 1994 and 2011 in the United States (6), Sweden (5), Canada (2), Australia (2), and Tonga (1). The number of participants with GDM in the studies was 302, and the ages (where specified) ranged between 18 and 58 years. Participants from a range of ethnic backgrounds and countries of birth were included in the combined studies, although details were not always stated. Two articles by Hjelm, Bard, Nyberg, and Apelqvist (2005, 2007) used the same study data, as did the two articles by Neufeld (2010, 2011). Key features of the studies are outlined in Table S2 (available at QHR.sagepub.com/supplemental). The analysis of firstand second-order constructs resulted in 11 themes or third-order constructs. The themes were grouped in relation to the synthesis questions, relaying the experiences of women with GDM, their diabetes risk perceptions, and views on diabetes prevention.

Experiences of Gestational Diabetes Mellitus Authors of all articles included a focus on women’s experiences of GDM. We identified five main themes in relation to women’s experiences. These were emotional response, loss of normal pregnancy, privileging the baby, information and health care support, and personal control. The themes are detailed below, illustrated with some examples from the articles. Emotional response. Most authors detailed women’s strong emotional response to GDM. Included in articles were descriptions of women’s shock at the diagnosis (n = 8), denial (n = 4), and difficulty coming to terms with having a disease for which they had no symptoms (n = 6). One woman said, “I was also in denial. I’m really small and I just thought that it wasn’t going to happen to me . . . I was shocked because I felt fine” (Nolan, McCrone, & Chertok, 2011, p. 614). Many women felt upset, with some women crying and feeling depressed. One woman said, “I was really depressed for weeks. I cried and cried. It was like, oh no, I don’t have diabetes” (Lawson & Rajaram, 1994, p. 543). Most articles (n = 11) included a discussion of women’s fear, describing women as “very frightened” (Hjelm et al., 2007, p. 173) and “scared” (Neufeld, 2010, p. 124). Women’s fear was often focused on the birth and the infant’s well-being, as well as on injecting insulin, selfmonitoring of blood glucose, and the impact diabetes might have on women’s future health. Authors in three articles described women experiencing guilt related to their GDM. One woman said, “I was horribly sad because I was afraid I had done something wrong to my child, that I had not looked after myself” (Hjelm, Berntorp, Frid, Aberg, & Apelqvist, 2008, p. 175).

In six articles, authors reported a more positive emotional response to GDM. Changing their diet resulted in women feeling lighter and more energetic (Bandyopadhyay et al., 2011). Some women appreciated GDM as an “alarm bell” (Hjelm et al., 2007, p. 173), which gave them the opportunity to improve their lifestyle. One woman said, I feel empowered and stuff after this. Like in the past few years I haven’t looked after my body as well as I should. I’ve always struggled with my weight. So I feel like after the baby is born I will get straightened out. So it’s been positive. (Evans & O’Brien, 2005, p. 74)

Loss of normal pregnancy. In five articles, authors described women’s perception that GDM made their pregnancy abnormal and distracted them from the “nesting” of normal pregnancy (Lawson & Rajaram, 1994). These feelings might have resulted from the medicalization of the woman's pregnancy, being removed from other women who were experiencing a normal pregnancy, and having to adopt a routine that made pregnancy different. Women also felt abnormal in social settings, especially when having to comply with a strict diet or self-monitor their blood glucose. One woman said, I could not reveal to others that I was having an abnormal pregnancy by testing my blood. I tested my blood in a bathroom where no one could see what I was doing. . . . I was trying to conform to the myth of a “perfect” pregnancy. (Lawson & Rajaram, 1994, p. 551)

Privileging the baby. Authors in nine articles described women’s focus on the pregnancy outcome and the baby’s well-being. Women discussed their child’s health as the motivating factor for adherence to treatment; it was their duty to “endure whatever sacrifices were needed” for the baby (Evans & O’Brien, 2005, p. 73). One woman explained, 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. (Collier et al., 2011, p. 1336)

Health care support and information.  Authors in eight articles discussed women’s negative experiences of the care they received. Lawson and Rajaram (1994) described how the diabetes became the “focus of medical attention rather than the pregnancy” (p. 552), and authors depicted instances of negative interaction between women and their health care providers. A woman described how she was made to “feel that I had done something really wrong” (Persson, Winkvist, & Mogren, 2010, p. 458), and another said,

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Qualitative Health Research  I found myself very annoyed at the clinicians because I always felt they were a tinge judgmental about the GDM and had a lot of assumptions. Any meeting with them started with, “now you have to change your lifestyle,” and I thought, you don’t know what my lifestyle is, so how do you know what is bad or what needs to change? . . . I am not a child. (Nicklas et al., 2011, p. 5)

Authors in eight articles stated that women experienced poor-quality or a lack of information regarding GDM, which Hjelm et al. (2008) found resulted in anxiety. One woman who felt uninformed after the birth said, “There was no support, so I went about my normal life” (Coughlin, 2010, p. 126). In contrast, some women wanted less information (Lindmark, Smide, & Leksell, 2010) and others had positive health care experiences. Authors of two articles reported women feeling valued and listened to by health care staff, and given helpful information. Personal control.  Authors of six articles discussed women with GDM experiencing a loss of personal control and being subjected to external surveillance from their spouse, family, friends, or health care providers. One woman said, “So many people judge, you know? I could go to a Christmas party at work . . . ‘Should you be eating that?’ . . . I get so annoyed” (Coughlin, 2010, p. 130). Authors also outlined women’s frustration at the sudden lack of internal control relating to blood glucose levels. One participant explained, It was being totally out of my control. There didn’t seem to be anything that I could do that would help. No matter what I ate, no matter what exercise I did. It just didn’t help my blood sugars. They just did whatever they wanted to do. (Evans & O’Brien, 2005, p. 71)

Some women, however, reported a sense of increased control and focus as the pregnancy progressed. Collier et al. (2011) described how women who reported changing their lifestyle believed it had a “significant impact on the outcome of their pregnancies” (p. 1337). Authors of two articles described how women moved away from being a victim to regain a sense of control between GDM diagnosis and birth. This sometimes manifested as a form of resistance, with women “cheating” on their diet (Evans & O’Brien, 2005). Other women started to take control more positively, by trying out different foods and making their own decisions, as one woman explained: I’ve poked and tried foods to see if my blood levels would increase. I tried pizza and cheese sticks. . . . My glucose level went sky-high. I then ate a candy bar and found out that I can eat a candy bar here and there and it won’t fool with it too much. (Lawson & Rajaram, 1994, p. 550)

Women’s Perceptions of Future Diabetes Risk Authors in all articles included a discussion of women’s perspectives on their future diabetes risk. We identified three main themes in relation to diabetes risk. These were: beliefs about diabetes; transience of GDM; and perceived future diabetes risk. These themes are detailed below. Beliefs about diabetes.  The beliefs women held about diabetes were varied both between and within studies. Many women had some awareness of GDM or diabetes and associated morbidities, but not of how diabetes could specifically affect them or their baby. In addition, they did not appear to differentiate between types of diabetes (i.e., GDM, T2DM, or type 1 diabetes), nor know when and how associated morbidities might arise. One woman revealed her beliefs about how GDM might affect her baby by saying, “She told me the baby can die. They can be born blind. It can give the baby a heart attack” (Collier et al., 2011, p. 1336). Women had varied beliefs about the etiology of GDM and diabetes. Some women attributed it to physiological causes—“It’s the pancreas that doesn’t work fully. The load on the body increases while pregnant . . . it can’t handle all the sugar . . . it increases” (Hjelm, Berntorp, & Apelqvist, 2012, p. 1379)—or behavioral causes—“Not doing enough exercise and too much eating is why I put on weight and got GDM” (Doran & Davis, 2010, p. 61). In Hjelm et al.’s studies (Hjelm et al., 2005; Hjelm et al., 2008), Swedish-born women tended to cite physiological causes, whereas women born in African and Middle Eastern countries named fate, the will of God, or the Evil Eye as factors in the development of diabetes. Beliefs were often influenced by peers. One woman said, My husband has a diabetic friend whose diabetes was caused by alcohol abuse and obesity. He was blinded from the diabetes. I plan to watch my weight and to avoid alcohol. I will not end up like my husband’s friend. (Lawson & Rajaram, 1994, p. 549)

Transience of GDM.  Authors in six articles described how women understood GDM as a transitory disease. One woman said, “The moment I have the baby, I have no more blood sugar problems. It’s like done, gone—instantaneous” (Neufeld, 2010, p. 89). This understanding was often attributable to women being told their diabetes would disappear after the birth (Hjelm et al., 2012), and Coughlin (2010) concluded that women’s risk of future T2DM was often minimized by health care providers. One woman said, “It’s never been stressed to me that you could be at risk for diabetes” (Collier et al., 2011, p. 1337). This message could lead to or reinforce a belief that GDM is

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Parsons et al. episodic and that women’s risk of diabetes returns to normal once the pregnancy is concluded. Perceived future diabetes risk.  Whereas some women were largely uninformed about their risk of T2DM, others were aware of it and were depressed and fearful. One woman spoke of the inevitability of developing T2DM, as she perceived it: “When I reach aged 40, I will probably get the disease. This might be temporary, but I will get it one day. . . . It is hard being pregnant knowing that one day I will become disabled” (Lawson & Rajaram, 1994, p. 548). Some women perceived their children as being at risk of diabetes, and sacrificed their own health to protect them. One said, “I watch my girls’ sugars. . . . I eat the stuff before they eat it so they don’t have the sugar. Like if there is a chocolate bar there, I eat it so they don’t eat it” (Neufeld, 2011, p. 487).

Women’s Views on the Prevention of Future Diabetes Authors of 12 articles included discussion on women’s views on diabetes prevention after GDM. We identified three main themes in relation to diabetes prevention: plans to prevent future diabetes, barriers and facilitators of diabetes prevention, and views on interventions. The themes are detailed below. Plans to prevent future diabetes.  Women’s plans to prevent diabetes varied. Some women planned to continue with the GDM regimen or make lifestyle changes after pregnancy. One woman explained, “We have already decided in the family to continue with these dietary habits . . . to be honest we will be eating healthier food. . . . It gives a possibility to delay becoming ill in diabetes” (Hjelm et al., 2008, p. 175). Not all women planned to make lifestyle changes, however, either because they did not perceive a need to or found it too difficult to maintain changes. In two articles, women believed that they were too young to worry about future diabetes. One woman said, “I figured I’ve still got 25 years to lose any excess weight, you know? I’ve got all this time to get myself into a situation where I am more healthy” (Coughlin, 2010, p. 124). Other women did not know what to do: “I don’t think I was ever actually told how to prevent it [T2DM] or that it could be prevented” (Coughlin, p. 126). Barriers and facilitators of diabetes prevention.  A major barrier to women undertaking preventive health behaviors was prioritizing the child’s and family’s needs above their own. One woman said, “All my time is devoted to them [the family] now and yeah, I base myself around them, what their needs are and stuff, you know. Forget about myself I guess sometimes” (Graco, Garrard, & Jasper,

2009, p. 22). Another woman described having little control over her own health in the context of her children: “[My] kids are too young. It is not about you but the kids. [Feels] like a hostage situation; I keep getting fatter and fatter” (Nicklas et al., 2011, p. 4). Other barriers to women adopting a healthy lifestyle included lack of time, too much organization required, limited child care, social isolation, fatigue, bad weather, poor body image, poor motivation, financial issues, difficulty shopping with children, child and spouse food preferences, and obstacles at work. One woman said, “I have a gym in my building and I still don’t have the time to exercise” (Nicklas et al., 2011, p. 4). Bennett et al. (2011) described the following barriers to attending postpartum follow-up care: the emotional stress of adjusting to motherhood, the baby’s poor health, difficulties accessing the clinic, fatigue or depression, and fear of a T2DM diagnosis. One woman who displayed such fear said, “I refused to check my blood sugar and . . . to check or prick my finger, intentionally. . . . I was nervous. Just the whole unknowing, ’cause once you know, then it’s like ‘Okay, now what do you do?’” (Bennett et al., p. 241). One researcher explored facilitators to a postpartum healthy lifestyle and another, facilitators to returning for follow-up care. Nicklas et al. (2011) described the following facilitators to postpartum healthy behaviors: a gym membership with child care, home exercise equipment or a digital video disc (DVD), increased accountability, including children in meal preparation, access to healthy food or food vouchers, having an exercise buddy or group, nutritional information, and meal planning advice. Bennett et al. (2011) described facilitators to returning to followup appointments as child care, the opportunity to have a discussion about family planning, good relationships with clinic staff, and the chance of a general checkup. Views on interventions.  Authors of three articles reported women’s desire for a support group to share experiences with other women with GDM, although in Lindmark et al.’s study (2010), those invited to a group at 12 months postpartum had mixed views on its usefulness. Women thought that groups should provide child care and suggested a combination of Internet support and group meetings. Nicklas et al. (2011) reported women’s enthusiasm for a lifestyle coach and preference for a combination of one-to-one sessions plus groups. One woman suggested, “Have a peer group in-person to start, to get to know each other, then use chat rooms/email to access at all times of the night!” (Nicklas et al., p. 5). Authors also presented the participants’ need for interventions to be community-oriented. Nicklas et al. (2011) and Graco et al. (2009) found that after delivery women wanted local community-based exercise groups for mothers and young children, or an exercise buddy. One woman

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said, “They could get some classes up and running, maybe a walking group. I suppose then if they’ve got little ones in prams, they could take them along with them. Or maybe they could organise childcare to go with it” (Graco et al., p. 23). The timing of an intervention was also identified as important, with different types of intervention being required at different points, from diagnosis through to the postpartum period. Lindmark et al. (2010) reported that women were happy to receive information at any time, but the authors concluded that the preferred timing for a group intervention might be 1 year post­ partum, once the disruption of the birth and the early months of infant care had passed.

Discussion This synthesis indicates the profound impact GDM has on many women’s experiences of pregnancy. Although research has shown that anxieties about birth and pregnancy outcomes are common among women with normoglycemic pregnancies (Laursen, Hedegaard, & Johansen, 2008), underlying this response in women with GDM might be a complex emotional reaction, in part related to a fear for their own future health and in part a sense of guilt at what they might have done that could cause harm to their own infant. This reaction resonates throughout the pregnancy and is compounded by the medicalization of the pregnancy, in which the attention is removed from the mother and directed to the mother’s responsibility to produce a healthy infant. The emotional response, coupled with the focus on the infant, appeared to result in the women’s own physical and psychological health needs being downplayed. Although GDM seemed to motivate a few women to attend to their own health, other women had a limited perspective on how to reduce their own risk of future episodes of GDM and of diabetes. Indeed, the data show that up to 84% of women with GDM have a subsequent pregnancy affected by GDM, suggesting that many do not adjust their lifestyles to reduce their diabetes risk (Kim et al., 2007). One implication for health care providers is to that ensure the shock, anxiety, and self-blame that often accompany diagnosis are addressed. Health care providers should also consider how to manage women as individuals without making them feel judged about their lifestyle or chastising them for noncompliance. Focus should be placed on the pregnancy-related needs of the mother as well as the GDM and the health of the fetus. We found varied understanding of GDM and T2DM, and cultural or ethnic differences in beliefs suggested in Hjelm et al.’s studies (Hjelm et al., 2005; Hjelm et al., 2012). Whereas Swedish-born women often understood diabetes as a result of physiological causes, African- and Middle-Eastern-born women cited fate and other

explanations outside their own locus of control. Similar divergence has been found in previous studies exploring ethnic differences in health beliefs (Dechamp-Le Roux, Valensi, Assad, Sislian, & Attali, 1990). These differences could have implications for self-care and diabetes prevention interventions: evidence suggests that if causes of illness are perceived as outside the individual’s control, people are less likely to adopt healthy behaviors because they do not believe these to be impactful (Rotter, 1966). The synthesis shows that clinicians often emphasized the transitory nature of GDM, perhaps in a desire to console patients who were shocked and scared. The idea of transiency can lead to confusion and false comfort: when the infant is born, the diabetes is resolved and so the focus returns to the routine and the business of child rearing, while the underlying risk remains unaddressed. It would be useful to conduct a future study to explore this in depth and to compare women with first and second episodes of GDM, considering their actions between pregnancies and whether the initial GDM pregnancy affected their behavior. The diabetes risk perceptions of women were additionally confused by a limited understanding of diabetes. A lack of discrimination between types of diabetes might make it hard for women to understand the meaning of GDM for their future health and to consider health behaviors that could reduce diabetes risk. Of the emotional responses to GDM, fear appeared to be a central influence on the way women constructed meaning in the context of a GDM pregnancy. This fear manifested in different ways, often with negative consequences for future health. Although much of the fear was focused on the baby’s well-being, women also feared the burden of T2DM, believing it would involve the same regimen as GDM, including frequent self-monitoring of blood glucose and insulin injections. Such fear might explain why less than 20% of women return for follow-up screening (Butler, McGovern, de Lusignan, & QICKD Trial Investigators, 2012). Fear of disease without the concurrent message of self-efficacy can negatively impact motivation and produce defense responses (Witte & Allen, 2000). Our findings indicate that better information and support are required for women with GDM, provided at the right time and through the optimum medium to address misunderstandings about diabetes and encourage followup screening. This support must address the underlying emotional response, minimize fear, and promote the potential for women to assert some control over their future health. Such an approach could help bridge the gap between knowledge of T2DM risk and engagement in protective behaviors. In this synthesis, we show that although some women see GDM as an opportunity to improve their lifestyle, others do not make changes, and many prioritize their

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Parsons et al. Phase I. Gestational diabetes diagnosis Emotional response

Shock

Upset

Denial

Guilt

Impact on healthattending behavior

Increased emotional response

Impact on healthattending behavior

Fear

Phase II. Pregnancy Medicalized pregnancy

Excessive focus on baby

Lack of information

+

Reduced control

Loss of normal pregnancy

Phase III. Postpartum Diabetes beliefs

Gestational diabetes is transient

Type 2 diabetes is inevitable

Type 2 diabetes involves same regime as gestational diabetes

+

Family context

Limited time

+

Emotional stress

Health services

Poor follow-up monitoring

Lack of information

Impact on healthattending behavior

Family’s needs prioritized

Figure 1.  Model of synthesis and impact on health-attending behaviors.

family’s needs. One woman described her situation as a mother whose weight was increasing as one of a “hostage” (Nicklas et al., 2011, p. 4), indicating she felt no control over her own health. Another reason for not addressing diabetes risk is the perception of being young and having plenty of time. Evidence suggests that younger age is associated with lower risk perception (Otani, Leonard, Ashford, Bushroe, & Reeder, 1992). Most diabetes prevention-intervention research has been conducted with older adults and therefore a different approach might be required to address diabetes risk reduction in a group of women of reproductive age. To extend the synthesis and provide a model to inform preventive intervention, we created a model expressing the relationship between the different

themes across three phases of GDM (see Figure 1). Phase I describes the GDM diagnosis phase. The strong emotional response to diagnosis experienced by many women might have a negative impact on selfmanagement and lead to disengagement or encourage an overly fearful response and maladaptive behaviors. The medicalization of the pregnancy during Phase II, involving frequent hospital visits, medical testing and behavior monitoring, results in an extreme focus on the health of the fetus and a loss of normal pregnancy for the woman. This, coupled with the lack of information and understanding about diabetes, leads to a sense of reduced control and therefore exacerbates the emotional response to GDM, in turn affecting healthattending behavior.

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Phase III, the postpartum phase, shows an apparent association between diabetes beliefs, the family context and health services, and behaviors to reduce the risk of future diabetes. Perceptions that (a) diabetes in pregnancy is transitory, (b) T2DM involves the same regimen as GDM, or (c) T2DM is inevitable and not preventable can stop women returning for follow-up testing or adopting healthy lifestyle behaviors. The prioritization of the family’s needs, coupled with the time limitations and emotional stress of adjusting to a new baby, can also negatively affect diabetes prevention behaviors. This is exacerbated by the lack of diabetes monitoring and information provision from health care providers. To address these barriers to health-attending behavior we suggest the following facilitators to support prevention of T2DM in this group: Phase I. GDM Diagnosis •• Improved emotional support. For example, discussion about the psychological impacts of diagnosis within usual health care consultations, or signposting to a support group or Web site Phase II. Pregnancy •• An integrated system of care in which health professionals ensure they attend to the usual pregnancy concerns of the mother as well as diabetes-specific health issues •• Improved information on GDM. This could be written information, the provision of educational group sessions, or provided through online support. Phase III. Postpartum •• Improved information on future GDM and diabetes risks for mother and child, including practical resources for diabetes risk reduction, such as meal planners and suggestions for physical activity with young children •• Family-focused behavior-change interventions accommodated within the family context •• Improved ongoing monitoring of women with GDM, including regular diabetes screening We recommend future research on what is of most importance to women with GDM. Collier et al. (2011) found that the desire for other information (e.g., on family planning) or a general checkup facilitated women attending their postpartum diabetes screening, and other

studies have indicated that women do not prioritize diabetes after delivery. Providing support with issues identified as important to women might encourage them to return for postpartum follow-up care. Coughlin’s (2010) study, conducted many years after GDM with participants who had subsequently developed T2DM, described women’s desire in hindsight to have had better understanding about their future diabetes risk or to have done more to try to reduce their risk. Additional research with similar groups of women would be useful to provide improved insight into facilitative and motivational factors in diabetes prevention behaviors.

Limitations As with all secondary analyses, the quality of the primary studies is a limiting factor. Explicit epistemologies, methods of analysis, and in-depth discussion were lacking in some articles. However, assessing the quality of qualitative studies in itself is controversial, and for this reason we have included all studies that provided evidence of the authors’ interpretations with quotes from participants. Two articles had some discrepancies between the firstand second-order constructs, and we excluded these second-order constructs from our analysis. In this synthesis, we have brought together data derived from different epistemologies, such as hermeneutic phenomenology and ethnography. There has been some criticism of combining and synthesizing results from different epistemologies on the grounds that it might compromise the integrity of the individual studies (Sandelowski et al., 1997). However, advocates of metasynthesis have suggested that benefit can be gained from multiple “truths” by synthesizing data drawn from different perspectives and methods (Pope, Mays, & Popay, 2007), and others have argued that the multiple approaches and descriptions of phenomena are grounded in an underlying truth (Hammersley, 1992). Studies were conducted at a variety of time points in relation to the GDM pregnancy and undertaken with women from different countries, ethnic backgrounds, and social groups, although full details were not provided in all articles. This is a limitation, because it is difficult to draw conclusions about such a disparate—and in part, unknown—group. However, the indication from this synthesis is that many experiences and perceptions are common across a diverse group of women. Finally, only a small number of studies examined women’s views on prevention of future diabetes, and these addressed varied research questions. This resulted in a reduced synthesis of the studies that addressed this specific question. There was, however, adequate data to generate some useful preliminary themes.

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Conclusion GDM offers a window of opportunity to intervene with women and children at high risk of diabetes. Findings from the synthesis show that women with GDM experienced feelings of shock, upset, denial, fear, and guilt, as well as a loss of normality and personal control. Many women viewed GDM as temporary and therefore were unaware of their future diabetes risk. Others were fearful of diabetes and believed it to be inevitable. Women lacked information and did not differentiate between types of diabetes, the associated morbidities, and disease management, which can lower attendance at future T2DM screening. Prioritization of the family’s needs, emotional stress, and lack of time were barriers to achieving a healthy lifestyle after delivery, and a focus on the needs of the baby was a recurrent theme. In designing T2DM prevention interventions, the following should be considered: addressing the emotional needs of women with GDM; providing women with clear information about future diabetes risk; and offering an intervention that fits with women’s multiple roles as caregivers, workers, and patients, focusing on the health of the whole family. Acknowledgments The authors wish to acknowledge Clare Blythe from King’s College London for her help with proofing this article.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the Beta Cell Trust.

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Author Biographies Judith Parsons, MA, MSc, is a research assistant at the Florence Nightingale School of Nursing and Midwifery, King’s College London, London, United Kingdom. Khalida Ismail, MRCPsych, PhD, is a professor of psychiatry and medicine and honorary consultant liaison psychiatrist at the Institute of Psychiatry, King’s College London, London, United Kingdom. Stephanie Amiel, MD, FRCP, is RD Lawrence Professor of Diabetic Medicine and the head of the Diabetes and Nutritional Sciences Division, King’s College London, London, United Kingdom. Angus Forbes, RGN, PhD, is a professor and holds the FEND Chair in Clinical Diabetes Nursing at the Florence Nightingale School of Nursing and Midwifery, King’s College London, London, United Kingdom.

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