The experience from preconception to postpartum when living with type 1 diabetes

Introduction

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?”

Methods

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).

Results

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

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.

Discussion

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.