The experience from preconception to postpartum when living with type 1 diabetes
The aim of this study was to further understand the impact and experience of living with type 1 diabetes while preparing for pregnancy, during pregnancy and postnatally.
A qualitative study design was utilised. Women who were up to twelve months postpartum and were living with type 1 diabetes, were eligible for the study. One-on-one individual interviews, lasting between 18 and 48 minutes, were conducted with consenting participants from August 2019 to July 2020. Following data collection, interviews were transcribed verbatim with coding and thematic analysis utilised for data analysis.
Seven women participated in the study. Findings from the data revealed five key themes:1 expectations, pressure and judgement;2 medicalisation and risk management at times overshadowing the joy of being pregnant;3 impact of hospital processes on women’s individual choices;4 positive and negative influences and impact of using technology and,5 striving for a new normal postnatally through self-determination, courage, bravery, resilience and support.
The experience of preparing for pregnancy, being pregnant and caring for self and baby postnatally is complex for women living with type 1 diabetes. Results identified the need for an individualised approach to this trajectory and the need for health professionals to be aware of women’s choices and experiences to ensure delivery of person-centred care. Normalising the experience as much as possible is also recommended for practice.
Despite advances in medical treatments and emerging technology, women with type 1 diabetes (T1D) in pregnancy have a higher chance of experiencing complications and adverse outcomes during pregnancy and labour. Additionally, the developing baby has a higher chance of poor neonatal outcomes.1-4 Clinical guidelines advise that while diabetes is not a contraindication for pregnancy, there is a direct link between high glycated haemoglobin (HbA1c) levels and complications developing during pregnancy.5
Evidence suggests women with diabetes should consider preconception care (PCC) three to six months prior to conception, with referral to a multidisciplinary team at the time of planning a pregnancy to see an endocrinologist, obstetrician, Credentialled Diabetes Educator (CDE) and Accredited Practising Dietitian (APD).5,6,7 Best practice guidelines recommend that women with T1DM aim for an HbA1c of less than 6.5% without significant hypoglycaemia, be commenced on high dose folic acid supplements and obtain a medication review and diabetes complications screening prior to conception.8 Furthermore, women should consider immunisations, weight management and alcohol, drug and smoking cessation.8 One of the goals of PCC is to empower each woman to set achievable goals, maintain a healthy lifestyle and build the necessary knowledge and skills to manage their diabetes in order to reduce the chance of diabetes related distress during their pregnancy.9 Literature suggests women suffering from chronic health conditions can experience emotional distress following PCC engagement,10 highlighting the importance of reassurance and support from a multidisciplinary team to improve outcomes.11, 12
The ability to maintain tight glycaemic management is complicated by varying insulin requirements throughout different stages of pregnancy, due to hormone changes as well as postnatally, due to the effects from breastfeeding.13 Pressure to maintain tight glycaemic management can result in depression and anxiety,13-16 and for some pregnant women with T1D, daily life may be characterised by an overwhelming sense of responsibility, self-blame, persistent worry and feelings of being ruled by their diabetes.17 However, women who feel supported with their sustained efforts to achieve and maintain optimal glycaemic management during pregnancy are reported to experience fewer negative emotions.14 Given that there is limited qualitative research investigating the individual experiences of women with T1D along the continuum from preconception through pregnancy to postpartum, the aim of this study was to answer the research question, “What is the experience from preconception to post-partum for women with T1D?”
A qualitative research design was used to explore women’s experience of T1D across the preconception to postnatal period. A convenience sample of women who met strict inclusion criteria were initially identified and screened for eligibility by health professionals from the obstetric medicine team. The chief investigator then approached eligible women on the postnatal ward or via email to discuss participation and seek both verbal and written consent.
Semi-structured, one-on-one interviews were conducted by the chief investigator from August 2019 to July 2020. The interviews were audio recorded and took place either, face-to-face in a private consultation room or over the telephone, at a time convenient to the mother. All participants were advised of the chief investigator’s clinical experience and background prior to consent being obtained. No identifiable participant data was collected or stored. Data collection continued until data saturation occurred and no follow up interviews were required.
Data from the transcripts were initially analysed independently by the first and third authors to aid sorting of responses and to assist in identifying key issues arising from the complexity of the phenomenon.18 Relevant quotes from the transcripts were then coded and further analysed to identify and highlight emergent themes.18 A member checking email was sent to each participant to advise of identified themes however no further modifications were needed.
The study received Ethical approval from the Mater Hospital Human Research Ethics Committee (HREC no 52493).
Seven women were contacted, and all agreed to participate in the study, having lived with T1D from a range of 2 years to 26 years. The women were between one week and seven months postpartum. Duration of interviews ranged from 18 to 48 minutes with subsequent verbatim transcription as discussed above. Findings from the data revealed five major themes. Supporting quotes for each theme are seen in Table 1.
Theme 1: expectations, pressure and judgement.
The first theme highlighted how participants felt about interactions with health professionals and family members. Unwanted advice, expectations, pressure, and judgement were identified, as was the amount of advice given during pregnancy.
Furthermore, several participants who had lived with the condition for many years specifically expressed that it would be beneficial to be entrusted to work in consultation with health professionals and be actively included in their own care decisions as they were ultimately responsible for managing their diabetes on a day-to-day basis.
Theme 2: medicalisation and risk management at times overshadowing the joy of being pregnant.
T1D was reported as the focus during the participants’ journey and this came with a significant toll. The preconception period was reported as a long journey requiring planning and effort to maintain consistent glycaemic management before being safe to try to conceive. Transitioning from “low risk normal” to “high risk abnormal” was experienced with frustrations of constantly being told about risks. Participants felt like they were repeatedly answering questions from health professionals and family members that were medicalised and high risk in nature. This took away some of the joy of experiencing ‘normal’ aspects of pregnancy. Overall participants valued and appreciated their health care team and expressed gratitude in being able to access “good support” however they grieved over not being able to enjoy or celebrate pregnancy ‘normality’ as other pregnant family members or friends may have.
Theme 3: impact of hospital processes on women’s individual choices.
Being able to make their own choices was a strong message received. One participant articulated this as, “I didn’t want type 1 diabetes next to my name being the sole reason for any intervention…” Several participants felt they were not heard, especially regarding dietary choices during pregnancy. They spoke about how if they increased their carbohydrate intake, this would appease some health professionals however they would then get a “lecture” from other health professionals as there would be a noticeable increase in their time spent out of range with hyperglycaemia. Other participants reflected how their efforts to manage diabetes were highly praised and commended however they were still encouraged to follow the team’s guidance rather than continue with their own choices which were evidenced as being effective.
Hyperglycaemia in pregnancy negatively impacted on the women’s self-concept as a mother, which was concerning.
The impact of hospital processes on planning the birth of their child was also discussed. Frustrations were voiced about induction planning and how they wished they had more input. Some women were concerned about the increased chance of “cascading complications” that could come from being induced and they felt there was an “expectation” and “pressure” to deliver their baby at 38 weeks without their individual circumstances being considered. While reflecting on their experiences, the language used was again concerning, for example being told they would have a ‘big baby’ and how they felt a routine induction plan for all women with T1D was not suitable to them.
Theme 4: positive and negative influences and impact of using technology.
The fourth theme highlighted changes that continuous glucose monitoring (CGM) had made for some women with T1D. Several participants had strong feelings on CGM, and while most were supportive, responses varied. For some, CGM was seen as a way to live a more ‘normal’ life and reduced anxiety, however for others it was a continuous reminder of having a chronic illness. This was a subsequent pregnancy for several participants, and they spoke about having access to subsidised CGM through a recent Government initiative. The end of the subsidy was a concern for daily life after the birth of their baby due to competing demands.
Theme 5: striving for a new normal postnatally through self-determination, courage, bravery, resilience and support.
The final theme highlighted resilience as the women transitioned into the postnatal period. The concepts of starting again and finding a “new normal” were conveyed and also how the joy of being a new mum outweighed the burden of living with diabetes. Several of the participants spoke of challenges in managing their diabetes and a newborn as well as how they needed to learn to relax their glycaemic management postnatally which was uncomfortable for some, given that they had managed so well with tight glycaemic management during pregnancy. The women spoke about support from their partner, family and health care team making a difference in helping them to adjust to their new normal and to family life.
Table 1: Participant responses to support identified themes
|Theme 1: Expectations, pressure and judgement.|
|I don’t think people always realise how… judgy they come across with… commenting on someone’s diabetes management… I’ve had a couple of scans where the baby was looking quite large on the ultrasound report and so the obstetrician at one particular appointment basically was like ‘well it might not be the diabetes but let’s be real, it probably is’ …it can be quite disheartening…I know I’m trying as hard as I can… just being a little bit less judgy would be nice.|
|…everybody will give you different advice and you find yourself so stressed out, going “oh my God, this person is telling me this and that person’s telling me that” and people will try and even if you don’t ask for the advice…I got really annoyed with it actually.|
|…maybe just trusting the patient a little bit more too, if something is working for them and obviously is not dangerous to themselves or baby… their A1Cs are healthy and growth scans are looking healthy… time to think about different approaches to the managing of pregnancy as a chronic illness and yeah giving more power back to the patient/mother.|
|…I feel like they should listen to mums more and just you know, just see what they want to do, give them the option, give them their advice but don’t push them.|
|…I guess sometimes working with the diabetic rather than working for the diabetic is a lot more beneficial.|
|Theme 2: Medicalisation and risk management at times overshadowing the joy of being pregnant.|
|… it did feel like a slow lengthy process it get it under control…but I think feeling like I was able to tick that box and get a HbA1C down to 7% and then fall pregnant was also very satisfying and feeling like you’ve done the best that you can…|
|…more time could probably be spent in the clinical setting in talking about the normal aspects of pregnancy and checking in with the mum…about how…they’re feeling… do they feel like they are bonding with the baby and that kind of stuff… the proportion of time that’s given to ‘well what are your numbers doing’ by everyone… it’s overwhelmingly the focus rather than… where are you at …. in your headspace?|
|…I was high risk and because I was not ‘normal’… it definitely took the kind of carefree joy away from the whole pregnancy experience… it was almost like the worry around you made you less excited about the pregnancy which sounds awful… I definitely did not enjoy pregnancy… like everyone else I guess.|
|Theme 3: Impact of hospital processes on women’s individual choices.|
|If women go into the dietitian during their pregnancy, they will get told to eat an enormous amount of carbohydrates… your margin of error is a lot bigger when you eat like they ask you to… I wish they could become more supportive especially because of the wellbeing of the mum, because it’s really hard from them to please the dietitians and their endocrinologist and the rest of their team…if you get it wrong and [your] blood sugars end up too high… you get lectures from the other members of your team and you also can end up having poor scans where your bub is getting bigger and it just leads to more intervention you know. You’ve got more of a chance of having to have a caesarean because your baby is too big… I just…I really think that’s important… that the whole thing about [dietitian advice] at some stage, gets addressed.|
|I definitely didn’t feel, supported in my choices, even though every time I went to clinic, everyone would say “wow this is amazing, your sugars are amazing, you’re doing great!” It was then “oh but you should change what you’re doing [laughs] cos that’s not the formula that we follow,” basically…|
|I was just really thankful and grateful that I kind of stuck to my guns and had that really positive experience, but it did feel like a constant uphill battle, pushing against like “oh ok I know that’s what you recommend but that doesn’t work for me”… I can’t imagine people who’ve lived with it for years and years suddenly being told “oh now let’s completely change your diet just because you’re pregnant”.|
|For me if I had gotten….lots of hyperglycaemia in my pregnancy, I would have felt devastated like I was harming my child. Just the same as um, you know, if someone drinks alcohol while they’re pregnant or takes a drug, for me having a hyperglycaemic episode would have a similar impact…|
|… the language around pregnancy care I found being diabetic was very different, it was…a constant worry like, “oh the scan results”… “when are we inducing you” and “when are we having a caesarean and getting this baby out?” it was very much um, I don’t know like disaster management… just being reminded that you’re not normal … an unnecessary fear I think around birthing. In retrospect I wish that…I could almost go back and show all the doctors “look he was a normal weight, normal size, I had a normal birth, I had a great birth outcome”…even though I was constantly doubting myself because of …the language…|
|…the language around the care… can definitely just trigger anxiety. Like I would not consider myself an anxious person at all pre-diabetes, pre-pregnancy… but … it can make me very highly strung… constantly hearing the all the risks. You just feel like a big downer.|
|Theme 4: Positive and negative influences and impact of using technology.|
|I would say CGMS is one of the three big things that helped me really deal with my anxiety around hypos and like the fear that just felt like it controlled my ability to make everyday decisions and live…|
|I feel like um it’s taken away the feelings of the helplessness I had in my previous pregnancy to control my levels… I can’t see how you can do it without it…|
|I prick myself probably about nearly 20 times a day, I was that anxious. It went down to like 4 pricks a day… I stopped letting it control me and actually started to live my life a bit more…|
|I found it made me much more anxious having that constant feedback… I found I was on even more of a roller-coaster I was over correcting cos I was anxious about the numbers going up… it wasn’t helpful… I just didn’t like having ‘a thing’ attached to me… it’s a constant reminder of ‘oh I’m not normal, I’m diabetic’…|
|I’ve heard various figures about how much it costs to treat a hypoglycaemic or a DKA in hospital and you know, if the Government could help subsidise everyone, even like, I’d just be happy if it were just half price…It doesn’t have to be free…but I just feel like it is so unreasonable to not recognise it you know as essential to living.|
|If we’re supposed to like pull off some sort of miracle of keeping our bloods like, keeping our HbA1c down and at the same time keeping within range, you can’t do that without data and the CGM gives us that ability to, it gives us the data to be able to make informed decisions about our diet…and to keep us safe. So, it helps us to avoid the hypoglycaemia and the hyperglycaemia episodes which can affect the health of not only us but our baby especially if we go into DKA or obviously have a severe hypo.|
|Theme 5: Striving for a new normal postnatally through self-determination, courage, bravery, resilience and support.|
|I just feel like I’ve completely gone back to normal… managing well, things are stable obviously… it’s not a constant like in pregnancy… it’s feeling much better, I feel it’s back to what was the new normal… having to think about myself a little bit more… where-as being not diabetic, the focus is completely on baby…|
|…I do think when you have the newborn, it’s hard to try and manage your diabetes as well as a newborn. ‘Cos I know sometimes like the pump will alarm to be like ‘BG required’ or ‘do this’ and I’m like oh yeah I’ll get to it and then it’s been like 20 minutes and I’m like ‘oh my goodness, I haven’t done that’. So yeah, I do find that yeah, it’s been a bit hard to try and…keep on top of the diabetes.|
|…it was a lot higher than I wanted it to be and obviously that was weird for me cos that high for me would have been my norm [laughs]…|
|…I never thought I could be this happy so, yeah it is exhausting, it is overwhelming… it’s more exhaustion but all of that and the diabetic management, everything is so totally worth it… it’s just the most amazing thing being a mum…|
|…Like, yeah just reflecting on how much I’ve learnt about diabetes but also how much my husband has learnt about it and my mum… the support that I get from the people around me is really helpful and important too…|
|…Um my partner was you know kind of onto me going you know, “you’re not looking at your blood sugars”… “are you aware that you’ve gone high, are you aware you’re having a hypo” and I’m just like “oh no, I’m not”… I couldn’t focus on myself because I was focusing on my baby.|
|…Hmm… [laugh] sorry, my husband has just said in the background, “it sucks!” [laughs] He’s being honest for me. He knows I’m trying to be polite but really, I’m like “ARGH I hate type 1 diabetes”! …it is hard work, but it is what it is and you just…gotta go with it … having you guys at the hospital, you guys are just so supportive, and you made the journey that much easier…|
Of importance to the participants was to inform other women living with T1D that pregnancy is very achievable with additional attention to glycaemic management which ultimately was worthwhile once their babies had been safely born. The participants wanted other women living with T1D to be aware of the importance of support from partners and family during pregnancy and postnatally.
The aim of this study was to further understand the women’s experience throughout the preconception, pregnancy and postpartum period and findings highlight challenges experienced as well as the joy and relief after giving birth. The study has also identified the important role health professionals from an array of disciplines have in supporting women with T1D from preconception through pregnancy and into the postnatal period.
Results support previous literature in the field but also uncover new findings related to this topic. Sparud-Lundin and Berg15 reported that women with T1D will prioritise the needs of their child ahead of their own and that diabetes was like another child to manage and take care of, with participants highlighting limited motivation or strength to maintain strict glycaemic management postnatally. Our study suggested that while some participants struggled to relax their diabetes management after giving birth, this may have been influenced by the increased availability of subsidised CGM to this population of women and subsequent influx of data from CGM devices to insulin pumps, smart phones and watches. A Cochrane review found insufficient evidence to suggest which form of blood glucose monitoring (continuous glucose monitoring (CGM) or capillary monitoring) was superior19 and participants in our study reported both positive and negative experiences with CGM throughout the pre and postnatal period. Although women in our study reported mixed feelings on the use of technology, the majority desired an expansion to the subsidised access scheme to make CGM more affordable. They also expressed hope that further advances in technology such as looping would increase feelings of “freedom” from living with diabetes.
Feelings of pressure and judgement were expressed by the women in our study across the entire period from pre-pregnancy to after the birth of their child. These feelings came from interactions with health professionals and some family members which implies a broad perception that having a baby while living with T1D is of great risk to both mother and child. The desire for health professionals to be mindful of the language used was repeatedly expressed as this impacted on the women’s confidence and their overall experience throughout the period from pre-pregnancy to after the birth of their baby. Dickerson et al20 report on the importance of language and the influence this has on the therapeutic doctor-patient relationship. Their recommendations to use of neutral and non-judgemental language that is free of stigma and imparts strength and positivity,20 can be directly applied to this study as participants strongly expressed a need for non-judgmental communication and interactions with a focus on the positives of being pregnant and having a child, rather than risk and potential adverse outcomes. Although the women were very aware of the risks involved in being pregnant and having T1D, there was a strong desire for aspects of routine or low risk pregnancy care to be incorporated into the pregnancy care for women with T1D. The participants appreciated advice and support from their health care professionals but ultimately, they wanted to be able to make informed decisions and to have these decisions respected.
Our aim for this study was to explore women’s individual experience and the methods used supported this aim. There are limitations however, including the small sample size which will not be representative of all experiences for women. Additionally, we did not focus on demographic data for this qualitative study but acknowledge that differences in age, ethnicity and/or parity may be some influential factors which could be explored further in other studies. It would also be valuable to conduct additional interviews on more women to further identify common or differing themes and/or other factors. The interviews were of varying time and depth due to multiple factors ranging from challenges with recruitment to time availability of participants. Further in-depth interviews at different time points during the preconception to postnatal phase may elucidate the experience even further. Studies that examine this trajectory for women with T1D from a health professional perspective using co-design methods may also be of benefit for future research.
Results from this study highlight the complexity and individualised experience of living with T1D during the preconception period, pregnancy and postnatally. Although risk is acknowledged by expectant mothers, focusing on the normal aspects of pregnancy is valued as this contributes toward a positive pregnancy experience. Additionally, findings suggest health professional’s aim to provide tailored and empathetic communication which addresses personal preferences and experience. This would enable and support delivery of person-centred care to these women.
The chief investigator would like to acknowledge and extend gratitude to the participants within the study, the staff within the Evidence in Practice Unit, Mater Health, Obstetric Medicine Team and Diabetes Educators within the Mater Mothers Hospital. Preliminary results of the study were presented and discussed at the 2020 Australasian Diabetes Congress and the chief investigator received the Roche Best Novice Poster Presentation Award.
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