Exploring the social experiences, stigma and discrimination, faced by women with gestational diabetes: A collaborative qualitative study and item-pool development.

INTRODUCTION

Diabetes stigma and discrimination refer to negative social judgements, stereotypes, prejudices and/or unfair treatment due to diabetes. 1 Ending diabetes stigma and discrimination, and their harmful impacts, have been identified as a global health priority. 1 , 2 , 3 , 4 To address diabetes stigma, we must first understand it; and to understand whether we have eradicated the problem, we must be able to measure it. Over the past decade, a growing body of research has explored diabetes stigma among adults with type 1 diabetes (T1D) and type 2 diabetes (T2D). Such research has demonstrated the prevalence, negative physical, emotional and social impacts, as well as potential protective mechanisms of diabetes stigma among these cohorts. 1 , 5 , 6 , 7 This evidence base is informed by rich qualitative accounts, 1 , 6 , 8 , 9 as well as large‐scale quantitative surveys 1 , 5 , 6 , 10 employing validated tools for the assessment of diabetes stigma among people with T1D and T2D. 11 , 12 While experiences of diabetes stigma are also reported among those with gestational diabetes (GDM), relatively little research has explicitly and comprehensively explored stigma surrounding GDM. 13 Though measures to assess self‐stigma related to GDM are being developed elsewhere, there are currently no published validated tools for the comprehensive assessment of GDM‐specific stigma. 1 Consequently, little is known about its prevalence, associated consequences and potential mitigating factors. 1 , 13 Indeed, the recent international consensus statement on diabetes stigma and discrimination identified the need for further research into the experience of stigma among those with GDM. 1

Across diabetes types, there exists overlap in the reported stigma sources (e.g. family, friends and health professionals), settings (e.g. health care, workplace, media and online), manifestations (e.g. enacted by others' and internalised) and impacts (e.g. emotional distress, social isolation and self care behaviours). 1 , 13 However, recent qualitative studies conducted in Denmark, the United Kingdom and the United States reveal unique social experiences of GDM and associated stigma. 13 , 14 , 15 , 16 , 17 For example, some respondents report experience of GDM signalling a failing in responsibility because of individual and societal expectations on women as mothers. 13 , 16 Following diagnosis, scare tactics and fear‐based messaging, frequently relating to the size and health of the unborn baby, are commonly used in maternal health care to motivate women to engage in intensive glucose management. 13 , 15 , 16 , 17 Further, GDM stigma has been qualitatively identified as a potential barrier to T2D screening and family planning post‐partum. 1 , 17 Existing measures of diabetes stigma, designed for adults with T1D and T2D, 11 , 12 are not equipped to assess stigma specific to the experience of GDM. Qualitative research supports the need for a tailored and comprehensive assessment tool in the measurement of stigma associated with GDM. 1 , 15

Meaningful involvement of the community with lived experience in the generation and refinement of new and acceptable self report measures is recommended. 18 Therefore, the current qualitative study was community‐informed, that is conducted by and with women with lived experience of GDM to further advance our understanding and the measurement, of GDM‐specific stigma. Specifically, this study aimed to (1) explore the experiences of diabetes stigma among women living with GDM (currently or recently) in Australia; and (2) develop a novel community‐informed and acceptable item pool assessing GDM‐specific stigma for future psychometric assessment and item reduction.

METHODS

The current study employed a two‐phase qualitative and participatory research design (see Figure 1). Reporting is consistent with relevant best‐practice guidance for community involvement in research 19 and qualitative research. 20 The study received ethics approval from Deakin University Human Research Ethics Committee (reference number: 2023–110).

Two‐phase qualitative and participatory research design.

This research project aligns with critical theory, which is interested in social justice, values lived experience contributions and emphasises reflective assessment. 21 , 22 Women with lived experience of GDM were meaningfully involved in research conduct, via representation within the research team, and the two‐phase data collection model. This study was conceptualised by EHT, a postdoctoral behavioural diabetes researcher with lived experience of GDM, and conducted in partnership with multidisciplinary academic investigators (EHT, EL, AW, MFT, HT and JS; expertise: psychology, diabetes stigma and/or endocrinology) and a GDM Lived Experience Advisory Group (G‐LEAG; CA, CC, JEC and VGM). G‐LEAG members were invited via direct email, social media (Twitter, LinkedIn and Facebook) and snowballing methods. The G‐LEAG included representation of diverse GDM experiences (e.g. receiving care in private/public hospital settings; insulin/non‐insulin treatment; years' post‐partum) and demographics (i.e. residing in two Australian states; aged 31–42 years; n = 1 born outside of Australia). They collaborated on the study design, interpretation of findings, item‐pool development and dissemination of results. Two female researchers (EHT and EL, a mother and postdoctoral qualitative researcher) facilitated G‐LEAG meetings (group and/or one‐to‐one; $50AUD gift voucher provided per meeting) and additional contributions via email. Further reflexivity processes throughout data collection and analysis are described below. The authors acknowledge their own personal and professional experiences in shaping this research.

Eligible interview participants lived in Australia, could communicate in English and had a recent (within 3 years) or current experience of GDM (enabling exploration of response temporality). Participants were recruited via the researchers professional websites and social media (Twitter, LinkedIn and Facebook), including sharing study details in Australian parenting and GDM‐specific Facebook groups, between May and June 2023. The study was described as focusing on ‘social experiences of gestational diabetes’. 8 , 9 Potential participants were directed to an online eligibility form (hosted via Qualtrics™), including study information and consent for Phase 1 interviews. Respondents were emailed to schedule a convenient time for an interview. Subsequently, participants were invited via email to ‘opt in’ to Phase 2 interviews (explicitly focused on stigma). Participants had no existing relationships with the researchers. They received a $50AUD supermarket voucher per interview completed. A summary of study results was circulated to all participants.

Overall, n = 29 consenting, eligible participants responded to the Phase 1 study advertisement, of whom n = 20 took part. Recruitment was closed upon no elicitation of new, substantive content in the successive interviews as determined by EL and EHT. All participants gave consent to be contacted for Phase 2 interviews, of whom n = 10 took part (two declined; three were unavailable; five did not respond). Participant demographics for each study phase are shown in Table 1.

Phase 1 and Phase 2 participant demographic characteristics.

Note: Data are n (%) unless otherwise stated.

Participants born outside Australia were from England (n = 2), the Netherlands (n = 1), Romania (n = 1), Singapore (n = 1) and India (n = 1).

All interviews were conducted online via Zoom, video‐ and audio‐recorded with consent, and transcribed. Transcriptions were checked for accuracy (by researchers only) and de‐identified.

Individual semi‐structured interviews explored participants' personal narratives and social experiences of GDM across a range of social contexts (health care, workplace, family and friends, and the media). To avoid bias and maximise opportunities for participants to discuss positive and negative social experiences, ‘stigma’ was not explicitly raised until the final questions (unless spontaneously discussed by the participant). 8 , 9 The interview schedule (Box S1) broadly follows an approach previously employed (by JS) among adults with T1D and T2D, 8 , 9 with refinements and additional items (e.g. relating to maternal care, pregnancy and future risk of T2D) informed by lived experience and clinician researcher insights, as well as literature review. 13 , 16 Phase 1 interviews lasted between 58 and 127 min and were conducted by EL, with regular debriefing discussions with EHT throughout data collection.

Phase 2 interviews were conducted by both EHT and EL together (n = 4) or EL only (n = 6), lasting between 23 and 57 min. Participants were asked to read through the draft item pool (sent via email) in advance of the interview, noting their thoughts and feelings as they went. During a semi‐structured interview (see Box S2), participants were invited to discuss their experience of the item pool and encouraged to identify areas for improvement or ‘workshop’ items (e.g. suggest alternative wording) where content did not reflect their experiences.

Data analysis was conducted using NVivo. Interviewers kept detailed notes throughout data collection, which was referred to throughout data analyses, item‐pool generation and refinement.

Reflexive thematic analysis 23 of Phase 1 interview data was guided by the Health Stigma and Discrimination Framework 24 and Diabetes Stigma Framework. 7 Data were deductively coded to five broad domains related to GDM stigma: (1) ‘drivers and facilitators’; (2)‘stigma markings’ (i.e. the diagnoses, behaviours or characteristics that ‘mark’ a person with GDM); (3) ‘manifestations’ (i.e. experiences); (4) ‘outcomes and impacts’; and (5)‘protective mechanisms’ (aligned with a critical theory lens 21 , 22 and calls for greater focus on interventions to mitigate against diabetes stigma 1 , 7 ). Within these five broad domains, data were inductively coded by EL, in collaboration with EHT (involving iterative discussion and refinement), until a final coding framework was agreed and applied throughout. The authors looked for patterns within the domain codes to identify themes and labelled these accordingly. The final themes, and illustrative quotes, were reviewed and approved by all authors.

A draft item pool, prepared by EHT, was initially informed from ‘manifestations’ of GDM‐specific stigma (categorised as: perceived or endorsed; anticipated; experienced or discrimination; and internalised) identified within the first six interviews, in combination with G‐LEAG insights, and review of existing published measures of diabetes‐related stigma. 11 , 12 The item pool was iteratively workshopped with the G‐LEAG and informed by the coding of remaining Phase 1 interviews, and participant feedback in Phase 2. Phase 2 involved concurrent data collection and analysis, to enable immediate item‐pool revision, with items added, removed, combined or revised throughout Phase 2. Consideration was given to readability; with participant phrasing in Phase 1 adopted where possible as well as keeping items and words short (e.g. ≤15 words per item and ≤3 syllables per word on average). Subsequently, Phase 2 data were inductively and thematically coded to identify salient experiences of and feedback on the item pool. Where participants further elaborated on their experiences of diabetes stigma in Phase 2, data were collated with Phase 1 responses for thematic analyses.

RESULTS

When asked directly, 14 participants (70%) recalled experiences of GDM‐specific stigma during their pregnancy, while all participants described GDM as a stigmatised condition. Themes (and sub‐themes) are described below with exemplar quotes listed in Table 2.

Exploring experiences of stigma relating to GDM: Domains a , themes and illustrative quotes.

The stereotype part is that you are an unhealthy person, generally. So your lifestyle is unhealthy and that's caused you to have gestational diabetes… Probably the same stereotypes they have for people with type 2 diabetes… And that kind of moral implication of gluttony and sloth. #4

The stigma is it's self‐induced or like you're the reason why you've done it.… They think oh you caused it, and mostly you can change it… #6

I think there is a stereotype that it just comes and goes. So everyone take(s) it [GDM] very casually… After your delivery you will be fine. But with type 2, I feel like there is a much more serious concern. #14

It's almost like your pregnancy's different to—yeah, almost like you're in a different category to the woman over there that's completely healthy, and it is almost like ‘Oh, she's got a healthy pregnancy’, whereas you're not because you've got gestational diabetes. #9

That the public just see—if you've got gestational diabetes, you're overweight, you're unfit, you're not looking after yourself, you're not thinking about the health of your baby. #18

I understand it from a logical standpoint of like okay, we want to have healthy babies and healthy mums obviously. But just, I think initially, with that diagnosis process where you feel like oh God, I've done something terrible to end up with this. #19

That whole image of people being unhealthy and overweight. So there'd probably be a [media] story about gestational diabetes, would probably have an image of somebody above a healthy weight or a, you know, the headless image where it just zooms in on somebody with fat rolls. #4

Just people not realising what it [GDM] is, and why people get it, rather than just thinking it's all just diet and exercise, which I think is probably similar to everyone just thinks of type 2 diabetes, and all the ads that we see on TV, that our children are all overweight, and there's an obesity epidemic. #12

I feel like I'm not too bad at advocating for myself, but there wasn't even an opportunity… I went into my last appointment with the obstetrician and they just handed me a piece of paper and said this is your induction date. I was like ‘I didn't even know that was happening, you haven't even spoken to me about it’… I know they have an obligation to make sure no harm is done to the baby and that kind of thing, but yeah I still think should be able to make a bit more choice. #1

Stop putting us all in a box. Stop thinking just about the numbers. We're still people. Just because we have a slightly higher risk of things going wrong doesn't mean things will go wrong, and you've [health professionals] got to stop thinking that things will go wrong and … pushing people into inductions, pushing people into things that they don't want or scaring people. #15

They don't come across in a very caring and understanding way …. it just seems like some health professionals are very by‐the‐book. ‘This is what you need to do, and if you can't do it properly, then that's on you’, kind of thing. #20

The hospitals have got different numbers [glucose targets], some people have to report their numbers every week, other people don't have to do anything with their numbers unless there's something that goes wrong… At my hospital, I've got GD, but if I was at your hospital, I wouldn't have GD, because my numbers are within those limits … reinforcing that 1 day, it's my fault, and then the next day, I wouldn't even have it. #12

Yeah, it's been a bit of a journey, thinking, ‘If I was in a different country, would I have got the same diagnosis?’ kind of thing. #13

I guess the frustration around the care across even the state of Queensland that we're in, the disparities … why aren't we being told the same thing across different states … different patients, different hospitals. #16

What I think is more harmful is the stereotype that the clinicians hold … you're a ‘high‐risk’ patient and you're a patient, not a person, and that you need to be managed, not cared for. So, I can't help but engage with that narrative because I am hearing it at all my appointments. #4

As soon as I was diagnosed, well, as soon as I was labelled ‘high‐risk’ because of my weight, it kind of stripped away the kind of birth that I wanted. And then gestational diabetes and hypertension and everything, I could feel any control I had over things slipping away…. #15

There's been a few times where I've had to test my sugars in public and I felt really embarrassed about doing that… Yeah I do feel like sometimes when I do test my sugars in public I get judged. #10

I always felt embarrassed that—if we were out for dinner, I'd have to run into the bathroom and go have my insulin shot and then come back… I even said to my partner one day, oh, do you think anyone would mind if I just sat here and did the insulin in my stomach? I think I did it once, and I went, yeah, nah, I don't feel comfortable doing it. #18

And then this time around I'm old, advanced maternal age, …I felt like it was going to be a burden, is probably how I first felt… I think it just kind of added to feeling like my body wasn't going to be up to it. #4

I wonder if some people might've thought, oh, you are overweight, that's why you've got diabetes. #15

There's a level of shame as well. Like you know, it's your fault. Which I know is not the case, but at the same time I still think there is that shame and embarrassment around it. So I think at the beginning I certainly felt that a lot, sort of trying to hide it in a way. But I don't think that shame completely goes away. #3

There was a bit of shame attached to it. …It's mostly the fact that being pregnant and having this is affecting my baby … it's that disheartening feeling that … when your health is affecting a whole new person, that's where it just feels like … you want them to have the best start, and you're just giving them a crap body to live in. #13

I think towards end of my pregnancy I was told that I would need to go on insulin for my meals, but I managed to just reduce a lot of my carbs and stay under. But I felt like I was failing… And then, when my baby was born and she had low sugars. I felt like I failed as well. #10—interview 2

Yeah it felt like you were a child kind of, you know ‘you have to write down everything and email it to me and if you've got over three high results I'm going to call you and we're going to put you on insulin’. #1

Some people's innocent, well‐meaning comments, sort of saying I was doing a good job with my diet and exercise, and controlling it that way, I think it was really well intentioned … it kind of made you feel like, ‘I'm doing okay at the moment, but if I do end up on the insulin, are you saying that that's my fault, or that I'm not doing a good job anymore?’ #12

I think my biggest problem and fear with it was the stigma that you receive from the medical profession as soon as you're diagnosed… That's a stigma I've been very aware of. Because you then sort of become the person who didn't know how to look after them in the first place, so how could you possibly know anything else from this point onwards? It's like you've lost credibility. #13

I just felt like people would judge me for having it… But at first I didn't want to tell my Mum or my brothers or anything like that because it just—it really felt—like I felt like I just wanted to keep it secret. Like it was just my secret. But eventually I just opened up and told them. #10.

I guess one of the reasons I didn't want to share with my family, my mum and dad, and that kind of thing… I guess I just didn't want my mum to gossip about it to family members or friends, about me. #16

I feel like I've kind of just been strategic about anticipating, you know, there's certain people I probably wouldn't tell because I'm kind of anticipating more of that judgement. #19

Because of how I was feeling about it, feeling like it's unfair, and it's not me, and I don't have this, it was really hard to tell people. It felt … there was a bit of shame attached to it. #13

My husband thought I was being a rebel, so that caused some tension as well, because he was like, can't you just do what the hell they [health professionals] want you to do? #17

Oh really ashamed at first, like I just couldn't tell—I felt like I can't tell anyone. That first weekend when I found out I just was like wanted to hibernate for the rest of the pregnancy. I was like I don't want to see anyone, I don't want to do anything, I just want to be my myself. #19

When it comes to gestational diabetes and them caring about your mental health, they probably should do a bit more prep around that… I don't think they understand or know, or care so much about that aspect of it to spend too much time offering people that information. #13

I feel sometimes a very depressed feeling like I could have done better to control this, but I know that there is no reason why I have this. Absolutely, it is genetic and my father had type 2 diabetes, so I do understand that scientifically there is no way I did this to myself. #14

Then, it was towards the end of my pregnancy, when I had the high insulin levels, and then the relationship with the hospital pressuring me to be induced, I guess that then made me feel really negative about having gestational diabetes, and I felt bad that I put [my baby] through this … affected me emotionally at the time. #18

I actually didn't do my follow‐up glucose test after my pregnancy… You now, act of a bit of defiance, of like, ‘No, I'm okay. I'm being healthy, I'm taking responsibility for it’, but I just sort of felt like, ‘Well, I don't want you to tell me if I pass or fail this test’. I think there's that stigma, too. #12

I actually wouldn't test, because I knew I would get a high level… There was a part of me that, you know was very upset at myself, or, you know, feeling like I failed if there was a high reading. #16 (2nd interview)

I think when I first got diagnosed I would just try to avoid testing while I'm out. #20

I am just seen as what seems like flags on a patient record… I am being treated as if it is, it's just, a decision tree of, you get to a certain week and you're this and you're that, okay, this is what we're going to do. #4

Still like no, you're on insulin so you need to get induced. I find they go the inducement route rather quickly. I find they sometimes disregard women what they know and what they think about their own health. #6

The doctors are all ‘you have to do this, you have to do this’. And I wish I'd done more research into things and I wish I'd been able to stand up for myself a bit more … it formed part of the decision about not having any more babies because I didn't really want to go through that again, having any autonomy stripped away from birth and what I wanted. The finger pricking and the insulin wasn't, that was fine. It was more of the treatment by the hospital and the specialists and everything. It was full on. It stripped away any kind of enjoyment I had out of being pregnant. #15

I reached out to friends over medical practitioners… I didn't really feel like my obstetrician was the person to turn to either, so I really just spoke to girlfriends that had had it in previous pregnancies themselves. #9

I think the more I speak to people that have had gestational diabetes … getting that knowledge of it's not something that I have done wrong, it's not something that I have, you know, failed in some way, that it can happen—you can be the healthiest person and it can still happen, I think that's helped a lot. #19

There is information out there, and there are people who know a lot about it, and we live in a time where we do have Instagram, and Facebook, and TikTok, and all of these things that can be bad, but there's a lot of great people on there now that are sharing information that you can't get anywhere else, that are answering questions, that are happy to talk to you about your specific situation. # 12

They were really good at explaining like what it is and what it entailed, and so what were the risk factors and how you can manage. Especially dieticians and the nurses in the diabetes clinic were really like positive in like trying to make it a good experience for yourself, and even if you do end up on insulin like it's just how it is. #6

They've always been really supportive with letting me kind of guide how I want to do it, that best suits me personally, as opposed to just a one general rule, that's what you've got to do, even if it's not working for you… I know that if I need advice, that I could go straight to them without any judgement or them getting angry because I had a spike or something. #20

I think with most stigmas … the more you learn the more you realise that the things you were thinking before don't necessarily apply. That's just educating yourself and just growing as a person. #6

Getting a bit more information, which I have to say was purely like my own sort of research rather than medical information I received, I felt a bit more relaxed. Like it was not so much I was wrong, and I had a plan I guess. So that sort of reassured me along the way. But I didn't really know a lot about it beforehand. #8

I started to understand … anyone can have it. So, I don't know, I guess once I learnt more about it, and then I just educated people, whenever—if they criticised me or anything. #18

Maybe that's part of the issue again that there's just not a lot out there about it … it's probably just that lack of communication that just further perpetuates the fact that it's something to be shameful of and something that maybe we shouldn't talk about, or if you have it, it's your fault, it's the woman's fault. #3

People know about it and people talk about it openly and what not, which I reckon is great, the fact that you don't really have to hide it… Maybe people would be more prepared for it if they know it's coming or if they know there's a high‐risk. #5

I don't think you ever hear about it on media. Like I said because if I did, I would have probably known about it beforehand, before I had my daughter. #6

Domains are adapted from the Health Stigma and Discrimination Framework. 24

Women in this study discussed persistent stereotypes (across settings and contexts) regarding the causes, management, severity and consequences of GDM. Stereotypes included that GDM is caused by an unhealthy diet, higher body weight or physical inactivity, and therefore, those with the condition are to blame. Similarly, elevated glucose outcomes and the need for treatment intensification (and insulin specifically) were perceived as being attributed to women's perceived (lack of) effort to manage their GDM. Because GDM resolves post‐pregnancy, women reported a public perception that GDM is not very serious. In contrast, a heightened perception of severity, driven by healthcare interactions, was related to potential negative impacts of GDM on the health and size of the unborn baby. Relatedly, GDM‐specific stigma may be facilitated by societal norms surrounding pregnancy. Some women reported feeling socially critiqued as mothers and inferior to those not affected by GDM. This was amplified where societal expectations around ‘healthy’ pregnant body size or maternal age were also challenged.

While a lack of media representation of GDM was reported, some women observed that individual responsibility was reinforced by media messaging surrounding T2D. Participants also suggested that hospital and medical policies facilitated negative and stigmatising healthcare experiences. For example, women reported limited and inflexible birthing options following diagnosis, health professionals using scare tactics and referencing adverse or fatal health outcomes for the unborn child should recommendations be questioned or not followed. Women discussed perceived inconsistencies in GDM screening practices, diagnostic criteria and glycaemic targets between hospitals, states and even countries. These variations were described as confusing and frustrating given that the diagnosis and treatment status were markers of GDM‐specific stigma (see below).

Beyond diagnosis of GDM, ‘markers’ of stigma included being labelled as a ‘diabetic’, ‘high‐risk’ or ‘red‐flagged’ in the healthcare setting; visible signalling of GDM self management requirements (i.e. insulin injections and glucose monitoring); and physical characteristics, which had broader stigmatising traits attached (e.g. living in a larger body or older age; intersectional stigma). Pre‐existing stigmatising characteristics were sometimes discussed as being protective of the impact of GDM‐specific stigmas, because women already felt stigmatised by other characteristics. Other women discussed feeling judged two‐fold, for both their GDM status and their visible signalling of the condition. Women who did not display visible stigma markers reported that stereotypes were reinforced through others' surprised reactions to a diagnosis or disclosure.

Participants discussed perceived stereotypes surrounding GDM (see also the Drivers section). Some endorsed such beliefs prior to their diagnosis and many applied stereotypes to themselves (i.e. internalised stigma) throughout their pregnancy. Women reported guilt and shame due to their perceived inadequate efforts (e.g. to lose weight or manage GDM without insulin therapy). Women described themselves as ‘at fault’ and ‘failing’. For some, endorsed and internalised stigmatising beliefs shifted throughout their pregnancy. However, this was not true for all participants, as one participant stated: ‘I don't think that shame completely goes away—#3’.

Experienced stigma, included receiving (or anticipating) negative reactions from family members, colleagues and community, including comments around diet, activity levels and body shape or size. In addition, health professionals were identified as a primary source of stigma. Participants discussed health professionals' comments making them feel responsible for health outcomes when their glucose was out of target. Within the clinical setting, some women reported being treated like children (being told how to behave or admonished), lacking credibility due to their diagnosis, or labelled ‘hard work’ if they queried health professionals' advice or decisions. Experiences of stigma were sometimes discussed as being ‘well‐intended’, that is misjudged attempts to encourage healthful behaviours, but instead conveying stigma and contributing to internalised stigma. For example, praising glucose management without needing insulin left some feeling worried about potentially needing to intensify treatment later.

Women reported impacts of GDM‐specific stigma on their social and emotional well‐being. Internalised stigma and anticipation of others' judgements contributed to non‐disclosure of GDM with family, friends and colleagues, leading to isolation, withdrawal and negative affect. Women described overwhelming sadness, disappointment in themselves and their pregnancy experience, and ongoing health‐related anxiety following pregnancy. One woman noted an absence of mental health support following diagnosis.

Experiences of GDM stigma led to suboptimal self care behaviours for some participants. The negative framing of insulin, both from health professionals and within the community, contributed to fear of insulin and potentially avoiding the uptake of insulin when needed. Some women reported choosing not to monitor or report glucose levels to avoid anticipated stigma in the healthcare setting. Social stigma also contributed to women not monitoring blood glucose levels or eating when hungry, when outside the home. One woman reported not attending screening for T2D post‐pregnancy as ‘an act of defiance’, seeking to avoid potential for further blame and judgement.

Being labelled as ‘high‐risk’ and the associated differential clinical treatment following diagnosis resulted in a perceived lack of autonomy for many women. Women described feeling pressured to achieve target glucose levels to reduce medical risks, only to be scheduled for labour induction, seemingly due to their GDM diagnosis, and without choice, rather than such decisions being based on their personalised risk with open discussion of delivery/birthing options. Some reported a retrospective wish for greater self‐advocacy during pregnancy, while another woman described their health professionals' negative judgements when they asserted their right to question induction. One woman described that her experience of the health system, and resulting lack of autonomy, ultimately led to her decision not to have more children.

Almost all participants discussed the importance of social support. Physical and emotional support from family and friends helped women to feel accepted, and facilitated optimal management and outcomes, protecting against internalisation of stigma. Peers who had ‘been through it before’ offered real‐life experiences of realistic GDM management and expectations. However, some peers offered inaccurate and stigmatising information (including via online forums). For example, discussions of insulin as a last resort resulting in fear of insulin or feelings of failure associated with insulin use.

Positive healthcare interactions, involving supportive, non‐judgemental and empathic communications, were discussed as supporting women's trust in and uptake of clinical guidance. Furthermore, health professionals were reported as helping to break down stereotypes and misconceptions surrounding GDM and addressing internalised stigma through accurate information provision and reassurances. Transparent and collaborative care, including informed decision making and flexible options, was highlighted as empowering, supporting emotional health, optimism and engagement in GDM management, and promoting equality of care.

Some women discussed self‐belief and compassion as important for limiting internalised stigma. They described feeling proud of their efforts, instead of engaging in self‐blame, which helped them to stay positive and advocate for autonomy. Women highlighted that education and access to non‐stigmatising informational resources could support more accurate beliefs surrounding GDM risk factors and complex influences on blood glucose levels, contributing to self‐compassion and therefore lower levels of internalised stigma. Furthermore, to reduce social stigma, women reported the need for greater education around the complex risk factors for GDM and that mainstream and social media may be an opportunity to raise community awareness.

The initial draft item pool included 66 items, designed to assess perceived, anticipated, experienced or internalised GDM stigma. Most items (62) were negatively worded statements indicative of stigma experiences. Questionnaire instructions and response scale (5‐point Likert scale; strongly agree to strongly disagree) were adapted from the T1D and T2D Diabetes Stigma Assessment Scales. 11 , 12

Tables 3 and 4 illustrate the iterative, and participatory, approach adopted for item‐pool development and refinement. Five versions of the draft item pool were tested with refinements summarised in Table 3. Overall, of the original 66 items, 27 were retained unchanged, 34 revised, five cut and 14 added. In addition, questionnaire instructions were revised to remove explicit reference to ‘stigma’ and direct those with prior experience of GDM to reflect on their experiences during pregnancy. No revisions to response options were suggested.

Summary of item‐pool versions (V1‐V5) and refinements in responses to Phase 2 cognitive debriefing interviews.

Revisions: grammar/sentence structure, n = 22; adoption of qualifying/softer terms (e.g. inclusion of the term ‘some’ when referring to people or health professionals stigmatising behaviour), n = 15; broaden scope (e.g. cut examples which narrow perceived relevance rather than help to illustrate relevance), n = 5; instructions clarified for relevance post‐partum and addition of recall period (i.e. ‘If you're not currently pregnant, please think back to when you were’) a

Cuts: due to redundancy, n = 4; unclear statement, n = 1

New: others' judgements, n = 2; stigma in healthcare setting, n = 3 and associated consequences, n = 2

Revision: removal of ‘stigma’ from questionnaire instructions: ‘The following statements describe some common experiences of gestational diabetes’ a

Revisions: minor edits (removal/addition of word) to clarify item, n = 5

New: addition of positively worded closing statement: ‘Thank you for sharing your personal experiences. Your responses will help us to understand the stigma associated with gestational diabetes so that we can best support people with the condition into the future’

V1 item‐pool instructions: ‘The following statements are about stigma and gestational diabetes. Some statements refer to your personal experiences of diabetes during pregnancy, and some are about your views on society in general. Use the response options to indicate how much you agree or disagree with each statement. We are interested in what is true for YOU. There are no right or wrong answers’.

Example GDM‐specific stigma items: Evolution from Phase 1 interviews to final item pool.

It felt like a blanket policy to me, like, you have diabetes, you're getting induced regardless of how it's managed… #1

And then straightaway doctor was like, oh, so we can induce you for a big baby. And then as soon as, gestational diabetes came up, it was standard. It was like, oh yeah, that's just what's going to happen. So definitely, yeah, they just assume. #6

Being put in a high‐risk category, or that sort of thing. Yeah, I think it makes you feel a bit, like, sad. Like, I was just thinking about with induction, and the minute you have gestational diabetes, you're just sort of told you're going to be induced. #12

They didn't give me options … didn't ask my opinion on my options or something, they just like kind of told me what to do… I feel like ‘treat me as individual’ is different than influenced my care choices, or unfairly influenced or limited my care choices. #4

I was offered single options or given half‐truths, or they skewed what they told me to get me to agree to something that I wouldn't agree to. #5

Some professionals were pushing their opinion on us in regards to the high‐risk pregnancy. And didn't let us have a voice at the hospital. #18

Advised to, or felt need to ‘lie’ about BGL readings to health professionals so I wouldn't have to start using insulin to manage my GDM (reflection from G‐LEAG meeting)

I thought I'd reached the stage—because I'm 36 weeks pregnant and I got diagnosed at 28 weeks that I would have numbers under control at this stage but I still don't. And sometimes I feel like they make it seem my fault for not having it under control because I've had it so long. But it's just nothing I can do. #10

I think the first time that I told my colleagues that I had it I think I was a little bit embarrassed. #5

Oh really ashamed at first, like I just couldn't tell—I felt like I can't tell anyone. #19

I responded with shame and embarrassment, and there still is that element of that. #16

I feel embarrassed to tell people about my gestational diabetes

I think it's that you are, you eat unhealthily, and you don't exercise or that, you know, or what I think people with that lens will see you eating an ice cream and think, oh, like, well that's why you've got diabetes. #4

They assume women who are overweight have gestational diabetes. A girl in my office who was pregnant a year—she had her baby a year after he, she had to get three glucose tolerance tests, because the health professionals told her she was overweight and she was going to have gestational diabetes, but she didn't and I did. #17

There's a negative stigma about gestational diabetes being a lifestyle disease. I think there is a negative stigma.

I don't see it as that, and I don't know where I would capture that bit … it's kind of like, it is blame, but it's something about, ‘could there have been anything I could have done to prevent it?’ which is a little bit different… #4

The final GDM‐specific stigma item pool included 74 items; 71 are negatively worded (e.g. ‘Some health professionals have made negative judgements about me because of my gestational diabetes’; ‘I blamed myself for my gestational diabetes’) and three are positively worded (e.g. ‘Judgements about gestational diabetes weren't directed at me’; ‘I don't blame myself…’). Example items and their evolution is shown in Table 4.

Overall feedback on the item pool was overwhelmingly positive. Items were well accepted, with participants reporting items as strongly resonating with their experience or reflecting on why they might resonate with others. I've experienced that, I experienced that. So, I thought it was really, really thorough… it was a really good broad range of all the different scenarios you could encounter. #6

I've experienced that, I experienced that. So, I thought it was really, really thorough… it was a really good broad range of all the different scenarios you could encounter. #6

The experience of completing the survey evoked emotional responses for some participants. Some women felt relieved reading the items, experiencing a sense of solidarity with other women. I guess it was more like, oh, I'm not the only one who thinks this way. #17

I guess it was more like, oh, I'm not the only one who thinks this way. #17

Other women reported negative emotional responses. However, they also felt altruistic that this research could help other women going forward and were glad they had participated, regardless of its emotional impact on them. Such feedback prompted the addition of a positively worded closing statement (Table 3). I actually teared up at one stage. I was just having a bit of a cry. I think it's just, reflecting on my whole experience… it's so good that so much time and effort's been put into this research and study. And it's getting the attention it needs. #18

I actually teared up at one stage. I was just having a bit of a cry. I think it's just, reflecting on my whole experience… it's so good that so much time and effort's been put into this research and study. And it's getting the attention it needs. #18

DISCUSSION

This two‐phase, community‐informed, participatory qualitative study was designed to advance our understanding of GDM‐specific stigma, including its drivers and facilitators, markers, manifestations, impacts and potential protective mechanisms, and facilitate its future measurement. While some participants in the current study did not identify with the term ‘stigma’, all described instances of anticipated, perceived, experienced and/or internalised stigma associated with GDM. Interview findings directly informed the development of an item pool designed to assess all forms of GDM‐specific stigma, as experienced in multiple contexts and settings, which was iteratively and collaboratively refined. The final comprehensive and acceptable item pool consisted of 74 items, ready for psychometric assessment and item reduction.

Consistently, participants reported GDM‐specific stigma as being driven and evidenced by stereotypes which emphasise the role of weight, unhealthy outcomes and health outcomes for mother and baby. As participants noted, such stereotypes are not unique to GDM but are commonly reported across diabetes types and facilitated by community perceptions, health messaging and mass media surrounding diabetes in general. 1 Furthermore, some participants reflected on broader social expectations of women and mothers and the experiences of stigma associated with maternal age and weight (gain) as associated with or masking GDM‐specific stigma. 13 , 16 Acknowledging that GDM‐specific stigma emerges at the intersection of societal norms regarding health, gender and pregnancy is essential in identifying relevant drivers and appropriate mitigating strategies. 1 , 13 , 16 Further research exploring intersectional stigmas and their impact in pregnancy is warranted. Planned correlational analysis between the GDM item pool and other measures of diabetes, weight, and health stigma and discrimination may further evidence their discrete and overlapping experiences.

As previously reported, 1 , 13 GDM‐specific stigma was described as negatively impacting women's social and emotional health, and engagement in health behaviours during pregnancy and post‐partum. Participants reported withdrawal and non‐disclosure in both social and healthcare settings due to anticipation or experiences of stigma. Perceptions of, and willingness to, initiate insulin therapy were also negatively impacted by a narrative of individual responsibility and personal failure; a phenomenon well documented in relation to T2D. 25 While GDM itself is temporary, its stigmatisation can have enduring effects, 1 , 17 contributing to long‐term concerns about health, family planning decisions and screening avoidance that could hinder early detection and management of subsequent health risks. A lifecourse approach to GDM prevention and management has been recommended, 26 and the impacts of early‐formed beliefs about diabetes and stigmatising experiences of GDM on later T2D diagnosis and management require exploration.

Participants reported a lack of autonomy and reduced enjoyment of pregnancy following diagnosis and ‘high‐risk’ labelling. As observed in a recent large‐scale Australian qualitative study, 14 antenatal care and policies surrounding GDM were perceived by women as inflexible and inconsistent, while lacking individual support and risk‐management. In stressing maternal responsibility for glucose outcomes and associated consequences for mother and baby, 13 , 15 , 16 , 17 well‐meaning health professionals can amplify feelings of guilt and shame, and may paradoxically worsen health and well‐being outcomes for the person with GDM. Consideration is needed of how to communicate accurately and respond to increased risk without stigma. Indeed, empathic, non‐judgemental healthcare interactions assisted in redressing internalised stigma and empowered women to manage GDM effectively. 15 Social support from family and friends, and particularly from peers with GDM experience, provided reassurance, reduced isolation and strengthened knowledge about GDM. Social resources and increased understanding of GDM supported participant's capacity for self‐compassion, and empowered participants to advocate for their health needs.

It has been suggested that qualitative and participatory research approaches can support individuals in reclaiming their agency, in the context of power imbalances and social exclusion typically observed in instances of stigma and discrimination. 22 , 27 Indeed, G‐LEAG members and some participants reflected on how the research process deepened their understanding of stigma (including how it had affected their own pregnancies), highlighted the emotional resonance of shared experiences and promoted their own sense of self‐compassion and agency. Despite necessary reengagement with past negative experience and emotions, participants were driven by their shared commitment to and appreciation of the research purpose. Drawing on the EMERGES framework, the lead author reflects on this study's role in supporting their own shift from internalised stigma towards integrated professional and personal identities, and empowerment. 28 These findings further highlight participatory research as both a data collection method and a potentially transformative tool against stigma for both participants and lived experience researchers.

Key strengths of this study included the following: drawing on published interview guides 8 , 9 and health stigma frameworks 7 , 24 to guide our exploration of GDM‐specific stigma and the comprehensive consideration of internalised as well as anticipated, perceived and experienced GDM‐specific stigma in both exploratory interviews and the novel item pool and the embedded meaningful involvement of community, from research conception to dissemination. Furthermore, the multidisciplinary authorship (including lived, research and clinical experience) and iterative data collection, item adaption and review process supported reflective practice and mitigated researcher bias. The development of standardised, valid, reliable and acceptable T1D and T2D stigma measurement tools has significantly advanced the field of diabetes stigma research. 1 , 11 , 12 The current study lays the groundwork for future quantitative assessment of GDM‐specific stigma, including intervention evaluations and longitudinal research. However, psychometric assessment and item reduction are needed first, including assessment of item acceptability among a large, representative sample. Participants in this study were largely Australian born, university educated, employed and residing in a metropolitan region, which may have implications for transferability. The relevance of findings and item‐pool statements should be qualitatively explored with priority populations who are at increased risk of GDM and/or healthcare barriers in Australia (e.g. women from ethnic minority backgrounds; living rurally). 29 The suitability of the novel item pool beyond Australia also requires further examination.

This study responds to a recent call for increased research to advance our understanding and measurement of stigma in GDM, 1 centring the voices of those with lived experience. 18 Findings underscore the pervasive occurrence and impacts of GDM stigma in Australia, influencing women's experiences of pregnancy, psychosocial well‐being and healthcare engagement. Supportive relationships, self‐compassion, as well as person‐centred and empathic health care are identified as potential stigma mitigators. The collaboratively designed item pool, now ready for psychometric assessment and item reduction, will enable future quantification of the occurrence, impacts and mechanisms of GDM‐specific stigma, as well as intervention effects, thus laying the groundwork for future research and initiatives to end GDM‐specific stigma.

AUTHOR CONTRIBUTIONS

The research study was conceived by EHT, designed with input from all other authors. Interviews were conducted by EL (exploratory and cognitive debriefing) and EHT (cognitive debriefing). EL conducted data analysis, with input from EHT, and review by all authors. EHT developed the item pool, with input from EL, and review by all authors and participants. CA, CC, JEC and VGM are members of the lived experience group (G‐LEAG), which was facilitated by EHT (who also has lived experience of GDM) and EL. EHT and EL drafted the manuscript, and all co‐authors revised the manuscript and gave their approval for publication.