A scoping review of gestational diabetes mellitus healthcare: experiences of care reported by pregnant women internationally

A total of 2856 articles were identified as potentially relevant to the research question from database searches. After removing duplicates (n = 811) and excluding non-relevant studies by screening titles and abstracts (n = 2045) and identifying an additional study through snowballing (n = 1), 112 articles were examined for inclusion through a full text assessment. Of these, 57 articles were included in this review, with 55 studies being excluded with reasons for exclusion documented. Figure 1 outlines the process of data gathering and Additional file: Appendix 1 for summarised study characteristics.

All of the included studies were published from 2005 onwards, except for one early study published in 1994 [21]. There has been an overall increase in the number of studies published each year to 2020 (see Fig. 2).

For the vast majority of studies (n = 55, 91%), recruitment of women with GDM was conducted via hospitals, clinics and healthcare providers, with one of these studies also conducting additional recruitment via workplaces [22]. Electronic databases were used in two studies for recruitment, with one study using a national diabetes database in Australia [23] and another using electronic health data in the United States [24]. Two studies which targeted Indigenous populations relied on pre-existing relationships; a Canadian study gained entry to an Indigenous population by building on pre-existing relationships with the Mi’kmaq communities [25] and an Australian study which focused on Aboriginal populations relied on existing research networks [26]. Only one study recruited completely outside clinical, healthcare and research settings using advertisements and community notices in targeted areas of Atlanta, Georgia in the United States [27].

A handful of studies (n = 5, 9%) were based in countries classified as low- and lower middle-income; there were no countries considered ‘least developed’ [28]. For the most part, included studies were concentrated in a relatively small number of high-income countries, with the top six countries for research on women’s experiences of GDM healthcare being Australia (n = 11), Canada (n = 8), Sweden (n = 7), the United States (n = 6), the United Kingdom (n = 4) and China (n = 4). The remaining studies were spread across a number of countries, largely one study per setting: Austria [29], Brazil [30], Denmark [31], Ghana [32], India [33], Indonesia [34], Iran [35, 36], Malaysia [37], New Zealand [38, 39], Norway [40], Singapore [41], South Africa [42, 43], Vietnam [44], Zimbabwe [45] (see Fig. 3).

Forty-eight of the studies (84%) were conducted with participants in urban areas and the remaining studies (n = 9) were conducted in regional and rural areas of Australia [26, 46], Canada [25, 47‐49], China [50], Tamil Nadu in India [33], and the state of New York in the United States [51]. A number of studies were conducted by the same research team and published in multiple installments; these studies were conducted in Lund, Sweden (6 studies), southeastern China (4 studies) and Melbourne, Australia (4 studies).

The majority of studies specifically focused on women diagnosed with GDM as the sole target group, though two studies also interviewed comparative groups of women with different conditions such as DM [27, 52]. Several studies targeted women as well as healthcare professionals, including nurses, clinicians, general practitioners, with data being compared between groups [26, 27, 32, 36, 41, 46, 47, 53, 54]. In one study it was noted how some participants had pre-existing medical conditions, such as hypertension and HIV, and that their co-morbidities directly contributed to their perspective on GDM [36].

Depending on the nature of the study design—whether qualitative, mixed methods or quantitative—the range of participants varied greatly, from a small number of interview and focus group participants (n = 8) [55] through to large datasets such as the open-ended responses on a cross-sectional survey (n = 393) [23]. While there was some stratification of participants based on individual factors, such as body mass index [56] as well as glycaemic targets set [38], the main categorisation made was often in relation to ethnicity in studies from countries such as Australia, Sweden and the United States, where the focus on ethnic differences was built into the design of studies. For example, this included directly comparing ethnic groups, such as Swedish-born versus African-born [57], or comparing groups of women by their ethnicity, namely Caucasian, Arabic and Chinese [58].

The studies varied in how they understood, described and measured women’s experiences of GDM healthcare. Of the 57 included studies, 50 (88%) used qualitative study designs. Only four studies (7%) had quantitative designs and three (5%) employed mixed-methods [29]. The vast majority of studies (n = 49, 86%) were cross-sectional, with seven studies [21, 51, 56, 59‐62] interviewing the same women at multiple time points. In terms of methodologies used, all the qualitative studies featured various types of interviews and/or focus groups. These were largely conducted face-to-face or via telephone. Seven studies employed more than one qualitative method to collect data [36, 43, 47, 55, 63‐65] and, in addition, three studies used mixed methods to collect data [29, 41, 46]. One study focused on First Nations women in Canada used a focused ethnographic approach [49], and another 2021 study focused on South Asian women in Australia using ethnography [54]. The quantitative studies comprised four survey studies using questionnaires [37, 38, 52, 66].

The majority of studies did not specify a theoretical approach (n = 31, 54%), and relied on general data analysis approaches such as thematic analysis. Where a theory was referred to, it was largely used as a guiding framework for study design and data collection, and data analysis where applicable (see Additional file: Appendix 1). The three most popular theoretical approaches were the Health Belief Model (n = 6), Grounded Theory (n = 3) and phenomenology (n = 8), with the last of these specifically including hermeneutic [67] and interpretative approaches [63, 68]. Two of the studies that focused on Indigenous populations used culturally-sensitive qualitative methodologies designed to respect and recognise Indigenous worldviews, namely the Two-Eyed Seeing Approach [25] and the Kaupapa Māori methodology [39]. Another study [47] focused on an Indigenous population discussed qualitative research in general being the most “flexible and interpretive methodology” and how using open-ended interviewing creates a dialogue which recognises Indigenous oral traditions and knowledge.

Studies varied in when they captured data during the pregnancy and postpartum periods. Where the focus of a study was specifically on healthcare, women’s experiences were often elicited by researchers directly; otherwise, healthcare experience was generally revealed in relation to broader questions within the research framing, such as looking at factors that influence migrant women’s management of GDM [69, 70] or examining barriers and possible solutions to nonadherence to antidiabetic therapy [71].

Almost all studies were conducted in a primary language of the research team, with fluency in the primary language largely requisite for participation. However, there were 14 studies involving multicultural populations that allowed women to use their preferred language as research teams consisted of multilingual researchers, research assistants or interpreters (see Table 2).

The findings from the 57 included studies were categorised into a number of salient aspects of formal healthcare experience, then further categorised as being positive and/or negative experiences depending on how participants’ self-reports were described and quoted by study authors. Where there was not an explicit reference to sentiment in the study, it has not been recorded in this review.

From the moment diagnosis of GDM occurs, a cornerstone of women’s healthcare experience is interactions with providers, which differs depending on the model of care offered. ‘Interactions’ can be broadly defined as interpersonal encounters where communication occurs directly through conversations at consultations as well as group sessions, or interactions via other means such as text messages, emails and phone calls. Forty-four studies (n = 44, 77%) discussed patient-provider interactions in their findings; these were positive experiences (n = 9, 20%), negative experiences (n = 16, 36%), or ambivalent, being both positive and negative (n = 19, 43%). As an example of positive experience, one study reported “women were happy with the care provided in managing their GDM, acknowledging that the care was better than in their home country.” [62] In terms of negative experiences, women felt, for example, healthcare providers could be “preachy” [55] and discount their own expertise in their bodies [21]. One study [40] specifically examined the difference in women’s experiences with primary and secondary healthcare providers, and found that overall they received better care from the latter. More generally, the participants from one study emphasised the importance of a humanistic approach to care [76].

Treatment satisfaction was a measure reported in two quantitative studies [37, 52], and the mixed-methods study [29]. The Diabetes Treatment Satisfaction Questionnaire (DTSQ) was used in two studies to measure satisfaction [29, 37]. The study by Anderberg et al. [52] used its own purposely developed instrument and found 89% of women with GDM marked “satisfied”, 2% marked “neutral” and no one indicated dissatisfaction. In the study by Hussain et al. [37], which used the DTSQ, 122 (73.5%) patients reported they were satisfied with treatment and 44 (26.5%) were unsatisfied; overall, the majority of patients were satisfied with treatment but retained a ‘negative’ attitude towards GDM. The study by Trutnovsky et al. [29] went further in its analysis as women responded to the DTSQ at three different phases – before treatment, during early treatment and during late treatment – and found that overall treatment satisfaction was high, and significantly increased between early and late treatment.

Diet is a fundamental component of treatment for GDM. Once diagnosed, many women are prescribed modified diets to maintain blood sugar levels, which they record on paper or by using an electronic monitor at specified times. Thirty-nine studies (n = 39, 68%) included findings and discussion about women’s experiences of prescribed diet, and of those studies (n = 33, 84%) this is captured as generally a negative experience. In some studies, women’s experience of the prescribed diet was reported as being both positive and negative (n = 4, 10%); only one study (n = 1, 3%) recorded it as a positive experience [38]. The difficulty of following a new diet during pregnancy was a key reason as to why the experience was negative, as well as practical considerations such as being able to easily access fresh food in remote areas [26]. In studies with multicultural populations, negative experience related to managing the advice in conjunction with culturally-based diets. As noted in the two studies led by Bandyopadhyay, women had difficulty maintaining their traditional diet due to the new restrictions placed upon them [54, 62].

Medication for GDM primarily involves some form of insulin, which is prescribed to manage blood sugar levels. Twenty-one studies (n = 21, 37%) included findings and discussion about women’s experiences of GDM medication and of those, it was mostly reported as being a negative experience (n = 13, 62%), with various reasons captured including insufficient time to “figure things out” [77] and causing feelings of anxiety and failure [78]. However, in a few studies prescribed medication was noted as being a positive experience (n = 3, 14%), or both a positive and negative experience (n = 5, 24%). In one study, a participant stated, “the fact that I’m on insulin makes it easy” [68].

Monitoring captures both the direct monitoring conducted by healthcare providers, primarily blood and blood sugar level tests as well as ultrasounds, as well as self-monitoring women were required to carry out and which was often then verified by healthcare professionals. Twenty studies (n = 20, 35%) included findings and discussion about women’s experiences of monitoring and of those it was seen as being negative (n = 14, n = 70%), both positive and negative (n = 5, 25%) and positive (n = 1, n = 5%). In the one study that reported positive experiences only, a participant reported that she thought it was good “they are monitoring us all the time” [30]. Studies reporting negative experiences with monitoring had participants citing reasons such as feeling over-scrutinised [65].

Access to healthcare can be a challenge in certain settings, and, even when access is possible, timeliness can be an issue. Of the 31 studies (n = 31, 54%) that referred to access in their findings, the vast majority of these studies (n = 28) reported access to timely healthcare being a negative experience, with reasons cited including geographic distance [39, 46], difficulties in being able to make a booking to be seen at a hospital [79] and then, when being seen, not having enough time with a healthcare provider [27, 44]. In one of the two studies reporting positive experiences [52], all questions relating to accessibility indicated satisfaction (97%); in the other of the two studies [38], the majority of women (68%) appreciated that health professionals took time to listen and explain.

Information to support women is critical in managing their GDM diagnosis. Ongoing management came from meetings with healthcare providers—described in one study as being “frontline support” [79]— alongside sources focused on diet, medication, exercise and other pertinent information. Across all the studies which discussed how provision of information by healthcare providers was received (n = 38, 67%), it was noted as largely negative (n = 24, 63%) and both positive and negative (n = 10, 18%), though there were discussions of positive experiences (n = 4, 7%). Considered together, all the studies suggested how crucial clear information is to a positive experience of healthcare. For women, having inadequate knowledge about how to cope was a source of disempowerment and, across the majority of studies (n = 44, 77%), participants reported they found information from providers was insufficient. Interestingly, one of these studies found the insufficiency was actually due to the information being “too much” [26], while another study [59] found there was a desire for “more frequent controls and dietary advice”. The inappropriate timing of information was also reported in a number of studies [31, 58, 79‐81]. One study noted how participants found one group of healthcare providers, midwives and nurses provided better information than general practitioners [40], while another noted the contradictory nature of advice from different providers [82]. Language barriers were also identified as a problem with information provision with a lack of information available in a woman’s preferred language [69].

Direct healthcare costs including out-of-pocket medical consultation fees, medication and medical equipment were primarily raised by participants in the United States [27], Ghana [32] and Zimbabwe [45], with the last of these reporting that some participants discussed “the related costs of treatment … resulted in participants foregoing some of the tests and treatments ordered” [45]. A study from Canada noted a number of participants with refugee status discussed the “economic challenge” of managing GDM and that the cost of diabetes care “was quite high and difficult to manage” [83]. Several indirect costs were also discussed across the studies. In a number of studies (n = 7), the additional cost of purchasing healthy food to manage GDM was brought up as being a burden [25, 27, 38, 42, 48, 51, 84]. However, in one study, women said the costs related to food went down as being able to buy take-away (fast foods) became restricted [38]. Loss of income [46] as well as daycare costs were cited [25], as was additional transportation and hospital parking costs [39, 46, 56]. Finally, women in one study reported having to change occupations and even quit work to manage GDM [21].