Molar pregnancy: a qualitative study of personal experiences and societal narratives of loss

Molar pregnancy, sometimes called hydatidifor m mole, is a rare complication of pregnancy and the most common form of gestational trophoblastic disease. Gestational trophoblastic disease affects around 1 in 714 live births in the UK (Royal College of Obstetricians and Gynaecologists, 2020). Less than 16% of molar pregnancies undergo malignant transformation, termed gestational trophoblastic neoplasia (Seckl et al, 2010). Follow-up treatment and support for gestational trophoblastic disease has been centralised in the UK since 1973, and is now a multidisciplinary service with a patient-centred approach (Ireson et al, 2014).

In the UK, gestational trophoblastic disease is managed across three specialist screening centres, Charing Cross Hospital (London), Weston Park Hospital (Sheffield) and Ninewells Hospital (Dundee). If staging and treatment for gestational trophoblastic neoplasia is required, patients travel to the London and Sheffield centres. The UK's registration and treatment programme has been associated with high cure rates of 98–100% (Ireson et al, 2014). The disease is monitored by regularly measuring human chorionic gonadotropin, essential to gestational trophoblastic disease diagnosis and treatment.

Molar pregnancies arise because of chromosomal faults at conception, which cause the rapid development of atypical placental tissue. When the fault is the result of fertilisation of an egg by two sperm, this tissue might be accompanied by non-viable fetal development, known as a partial molar pregnancy. Where the molar pregnancy contains no genetic material from the ovum, fetal tissue will be absent, termed a complete molar pregnancy (Royal College of Obstetricians and Gynaecologists, 2020). Molar pregnancies can induce symptoms associated with a ‘typical’ pregnancy. The condition prompts comparable biochemical and physiological processes, including amenorrhea, nausea and a positive human chorionic gonadotropin pregnancy test.

Following a positive test, women with a molar pregnancy may initially be enrolled onto standard antenatal pathways in the UK NHS, which can facilitate timely diagnosis of gestational trophoblastic disease. As a result of the accessibility of first-trimester ultrasound and establishment of early pregnancy assessment units, the condition is often diagnosed in the early stages of pregnancy at 10–11 weeks' gestation (Parker and Tidy, 2021). This may follow routine ultrasound or presentation with symptoms at the early pregnancy assessment unit, most commonly bleeding (Royal College of Obstetricians and Gynaecologists, 2020).

Midwives may be the first clinical practitioners encountered by women in this situation. Treatment for suspected molar pregnancy initially entails a surgical uterine evacuation, with diagnosis then established histologically at one of the three specialist centres. This means there may be an additional wait for diagnosis to be confirmed. Confirmed cases are registered at one of the centres for human chorionic gonadotropin monitoring. Rising or plateauing human chorionic gonadotropin levels are indicative of transformation to persistent disease or gestational trophoblastic neoplasia, and these women require chemotherapy.

Gestational trophoblastic disease can have lasting physical psychological and social impacts. In the case of molar pregnancy, although outcomes are favourable and support from the UK specialist centres is ongoing, patients are faced with the loss of a pregnancy, surgery and frequent human chorionic gonadotropin monitoring (Blok et al, 2022). Little qualitative research has explored these experiential issues in-depth. In their systematic review of literature on patient experiences, Ireson et al (2018) found only a small number of qualitative studies on gestational trophoblastic disease, which considered both molar pregnancies and gestational trophoblastic neoplasia. These studies highlighted implications of the condition, including side effects for those requiring chemotherapy (Singh et al, 2017), psychological impacts (Petersen et al, 2005), managing responses from others (Flam et al, 1993) and impacts on relationships (Ngan and Tang, 1986). However, no literature takes a social scientific lens to such experiences. This is necessary to ensure that practitioners are attuned to the wider factors shaping individual responses to gestational trophoblastic disease. In the UK, these are situated in reproductive experiences more generally and can thus be incredibly emotionally charged.

This article presents findings from UK-based qualitative research that aimed to explore the impacts of gestational trophoblastic disease on embodied and emotional experience. The research took a sociological approach, situating patient experiences of molar pregnancy in wider societal discourses of pregnancy and loss.

Literature

As a result of initial parallels in bodily symptoms and signs, patients may respond to a molar pregnancy in similar ways to other forms of pregnancy loss, particularly where the pregnancy had been ‘planned’ and a home pregnancy test provides knowledge of the pregnancy at an early stage. Existing social scientific studies of this event can therefore help to make sense of the experiences voiced by molar pregnancy patients.

In her in-depth account of pregnancy loss in the USA, Layne (2003) noted that miscarriage placed some women in a liminal position between motherhood and non-motherhood, particularly if this were to be a first child. This positioning is also true of the babies lost, which may not be recognised in clinical work and legal frameworks (Middlemiss, 2021). The liminality of pregnancy loss, and the way it challenges linear narratives of pregnancy and human development, contributes to its positioning as ‘taboo’ in Euro-American societies (Layne, 2003). These factors have enabled a culture of silence to surround pregnancy loss, both in public life but also in research. As a consequence, women affected and their families may find it difficult to convey feelings of loss, particularly when there are few public stories available to help express the experience (Cecil, 1996; Layne, 2003).

In recent years, experiences of pregnancy loss have become more visible in research, the media and wider society. This is attributable to patients and charities campaigning for greater recognition of experiences of loss (Cox, 2022), as well as work highlighting the significance of the topic to the social sciences, public health and reproductive healthcare (Kilshaw, 2020). A growing body of social scientific research has drawn out some important elements of patient experience, highlighting its entanglement with societal values and clinical practices. For example, some authors have considered the role of technology in shaping experiences, demonstrating how pregnancy tests and obstetric ultrasound help to solidify the pregnancy and anticipations for a growing baby (Melo and Granne, 2020). These studies have shown that experiences can vary according to cultural contexts (Qureshi, 2020) and depending on gestational stage. In the UK, pregnancy loss is classified according to whether it falls before or after 24 completed weeks of pregnancy, corresponding to either a miscarriage or stillbirth (Royal College of Obstetricians and Gynaecologists, 2010). This has implications for how the loss is legally recorded and certified (Cox, 2022), and for access to support, such as bereavement leave (Winter, 2022).

In terms of patient experience, these classifications influence family's abilities to memorialise the pregnancy (Middlemiss, 2021) and social responses to miscarriage. For example, Middlemiss and Kilshaw (2023) noted the existence of ‘hierarchies of loss’ according to the gestational stage at which pregnancy ends, influencing the acknowledgement of loss by healthcare professionals and social life (Lovell, 1983). Early pregnancy losses may garner a broader range of responses because they can be particularly ambiguous, interpreted variously as the loss of a baby, a conception or a possibility (Frost et al, 2007).

Molar pregnancy confounds these classifications even further. In molar pregnancies, any fetal growth will not be viable, and in the case of a complete mole there is no fetal development at all. These pregnancies question dominant understandings of pregnancy, which associate, or even equate, this event with a future baby. Social scientists have noted that this view, which sees pregnancy as a ‘trajectory of linear progress aligned to the foetus's expected biological development’ (Browne, 2022), does not account for alternative outcomes of pregnancy such as early losses, stillbirths and terminations. This has implications for lived experience. In terms of molar pregnancies, although elements of patient experience may be comparable to those facing other forms of pregnancy loss, the rarity of the condition and impossibility of (viable) fetal development mean that this outcome can be particularly difficult to comprehend. Coupled with the risk of persistent disease those diagnosed with molar pregnancy therefore have unique care and support needs, but these can remain unmet by local teams without specialist knowledge (Joyce et al, 2022).

This study takes a social scientific perspective, which foregrounds individual experiences of molar pregnancy and demonstrates their embeddedness in wider societal responses to pregnancy and loss. The authors claim that improved understanding of these issues can help to promote supportive care from practitioners encountered by patients on their clinical pathways, which span reproduction and oncology. This qualitative analysis of online blog posts and interviews with women provides much-needed insight into experiences of molar pregnancy diagnosis, care and support. The characteristics of the dataset limit the extent to which recommendations for practice can be developed, and instead the aim is to improve practitioner awareness of this rare condition and sensitivity to the heterogeneity of patient experience.

Methods

This study was drawn from a wider research project on experiences of gestational trophoblastic disease. The project took a sociological approach and aimed to consider how experiences of gestational trophoblastic disease are shaped by wider societal narratives of pregnancy and cancer, but also by the organisation of gestational trophoblastic disease care. This is in terms of diagnostic pathways, the technologies encountered and the support offered to patients. The research used a range of qualitative methods, enabling flexibility and sensitivity to social context (Mason, 2002).

Data collection

To develop a holistic picture of how gestational trophoblastic disease is understood and experienced, the study drew on qualitative analysis of 22 online narratives, 24 semi-structured interviews with clinicians and patients, and 10 observations of clinical environments, including multidisciplinary team meetings and laboratory work. Eight women affected by gestational trophoblastic disease were recruited for interview using contact details provided in their online blogs, with all blogs identified following an online search. Five UK interviewees were recruited with the help of a charity supporting those affected by pregnancy and cancer and through an NHS specialist gestational trophoblastic disease centre. Practitioners were recruited for interview and observation across two NHS specialist centres.

This study explored the personal narratives of molar pregnancy only, taken from 18 publicly available online blogs and eight semi-structured interviews. Six of the interviews were conducted with authors of the online blogs, meaning a total of 20 women's experiences of molar pregnancy were represented. Analysing online blogs was a suitable method because they provide in-depth written accounts of diagnoses, treatment and follow-up over time. This approach also overcame barriers to recruiting patients with this rare disease, as well as challenges to in-person research presented by COVID-19 (though not anticipated when designing the study).

In some cases, patient blogs had begun prior to their diagnosis, so featured posts on other aspects of their lives. More commonly, the blog had been established solely to record their experience of molar pregnancy. The blog posts included spanned from June 2011 to January 2021 (when data collection began), and detailed experiences of a complete or partial molar pregnancy diagnosed between June 2010 and April 2020. One exception was a diagnosis that occurred in April 2001 but was not documented in a blog post until 2017.

Semi-structured interviews provide a means to access in-depth accounts of experience. However, unlike pre-existing online accounts, they offer the opportunity to gain clarification and further insight into points of interest, and for the introduction of unexpected topics. Semi-structured interviews were conducted with eight patients. Six were identified through their blog, one was identified through a charity supporting those with experience of gestational trophoblastic disease, and one through assistance from NHS practitioners.

Interviews were loosely structured by an interview guide that covered experiences leading up to diagnosis, making sense of diagnosis, treatment and monitoring, support, and legacies of gestational trophoblastic disease. Demographic information, such as postcodes and ages of participants, was not sought because the purpose of the was not to identify relationships between variables, but to seek in-depth accounts of experience (Mason, 2002). Interviews took place between March 2021 and May 2023 and were a mix of in-person and online encounters, ranging from 55–90 minutes. In-person interviews took place in the UK, with online interviews conducted with participants in the UK, USA and Canada. All interviews were conducted by the lead author.

Data analysis

The blog posts documenting experiences of molar pregnancy were copied into Microsoft Word documents. Along with the interview transcripts, and after an initial reading of all, these were transferred to qualitative data analysis software (NVivo). Once transferred, these were read again by the lead author and initially coded using a line-by-line approach, which became more sophisticated for subsequent data. As analysis went on, coding became less ‘fine grained’ (Saldaña, 2021), taking on a broader thematic approach (Braun and Clarke, 2006). Recurring events, ideas and emotions became a focus for coding, informed by social scientific literature on pregnancy, diagnosis, the ‘fetal subject’ and the work on loss described above. After the whole dataset had been coded the most salient codes were grouped into overarching themes. The interview and blog extracts from the themes were then shared with the co-authors, who are practitioners at a specialist gestational trophoblastic disease centre. They concurred with the development of themes and helped to refine their presentation, as well as articulate the implications of these sociologically-informed findings for clinical practice.

Ethical considerations

This work was approved by an NHS research ethics committee (reference: 21/WM/0018) and by The University of Sheffield (reference: 037518).

All names presented are pseudonyms and direct quotes were only used with permission. Where it was not possible to obtain permission, blog extracts are not reproduced verbatim but paraphrased.

Results

The entire sample, including blog posts, was made up of 20 women (Table 1). Seven were from the UK, with women from the USA (10), Canada (2) and Australia (1) also included, as these locations have similar approaches to antenatal care and management of gestational trophoblastic disease. Nine women had experienced a complete molar pregnancy, seven had experienced a partial molar pregnancy and four self-reported without confirming the subtype. Of the 18 blog authors, six discussed chemotherapy treatment for malignant disease (gestational trophoblastic neoplasia). Six blog authors were interviewed. The two additional women interviewed had been diagnosed with one complete and one partial molar pregnancy, with the former undergoing chemotherapy. Importantly, all the women had welcomed their pregnancies, with the vast majority being anticipated. Experiences of molar pregnancy are likely to differ for those whose pregnancies are unintended or undesirable.

The three overarching themes were ‘loss’, which incorporated women's reactions to the end of their pregnancy, sense-making and responses from others; ‘isolation’, which comprised themes such as ‘rarity’, ‘lack of awareness’ and seeking support; and ‘alienation’, which captured the horror of diagnosis, feelings of ‘failure’ and barriers to ‘moving forward’.

Loss

Many of the participants had experienced the initial stages of their molar pregnancy as a typical pregnancy. For the majority, the path to confirming a pregnancy had started with bodily signs, particularly if they had been attempting conception. They described ‘strong pregnancy symptoms’ (Hope), which like others included ‘nauseous, like gagging’ (Nat), a ‘little belly’ (Juliet), and missed periods. For most, this prompted a home pregnancy test to confirm their suspicions. In line with the dominant framings of pregnancy in Euro-American cultures, a positive test led many to begin imagining a future baby:

‘You get that pregnancy test that's positive and you're immediately like, awesome, we're going to have a baby’.

Fiona

‘When you see those two lines on the pregnancy test, your hope is there right? Like you can't help but like your mind starts racing 9 months from now’.

Joan

However, the association between a positive baby and a pregnancy test was complex. Diana described that it was not only her interaction with the test in that moment, but her longing to be a mother for many years that prompted her to almost immediately ‘envisage [a] whole lifetime ofhaving a baby, them growing up, them starting school’. Some made this connection only tentatively, particularly if they had experienced a previous loss.

Weeks after this positive test, participants were told that the pregnancy was not viable. Beth was told ‘it doesn't look like a good pregnancy’. For some, this news was delivered at routine ultrasound, but others experienced unexpected symptoms, usually bleeding, which led to a scan. At this initial scan, two participants were first told this was an anembryonic pregnancy and around half had molar pregnancy raised as a possibility. Elaine described feeling as if her heart had stopped and then ‘sunk to the bottom of the sea’, before panic set in. Others experienced similar feelings of shock and sadness, with Annie saying she ‘broke down’. A minority of participants described anticipating that the scan would not bring positive news, having experienced feelings of unease in the days or weeks prior, or as Gina noted, a feeling that ‘something wasn't right’.

The participants went on to have one or more surgical evacuations, but at the point of an initial diagnosis of molar pregnancy their experiences began to diverge from those of more common forms of miscarriage. This was in terms of clinical pathways, such as the transfer of their sample to specialist pathology, but also when making sense of this unanticipated news. For example, following the news, participants articulated uncertainty around what had been lost. This could be exacerbated by comments from family and friends, including the common question ‘so you weren't really pregnant?’ (Diana). Fiona, who had experienced a complete mole, understood that there had just been a ‘mass of cells’ with no baby.

‘There was a lot of tears. Not necessarily for the loss of a baby because there never was one’.

Annie

This ambiguity meant that Bea ‘never really considered it a loss’. This helped some women to manage the experience emotionally. Gina said that knowing there had not been a baby at any point was a ‘blessing’. Joan said this helped her get through the grieving process because she would tell herself ‘it's just tissue’. Such perspectives on the loss helped those like Fiona to rationalise what had happened.

Receiving a diagnosis of molar pregnancy helped some to manage the experience, but all expressed feelings of sadness. Having ‘planned the nursery [and] picked out the name’ Iris was particularly affected.

‘I was four weeks along but that baby was in my head, he existed’.

Iris

Her experience highlights the emotional connection she had established to the pregnancy, regardless of gestational time or viability. Diana had also been saddened by the loss, having tried for several months to conceive. In light of insensitive comments questioning the status of her loss, she reflected that hers was ‘a pregnancy, nevertheless’, and explained that such comments made it ‘more difficult to grieve’.

Participants also found grieving difficult if they needed further treatment. Having to shift from planning for a baby to preparing for chemotherapy, Joan described having to ‘cross off due date, add in chemo dates’, meaning she ‘didn't have time’ to be sad because the ‘sadness turned to action’. Annie highlighted that the routine of treatment and monitoring impacted this too, and was prepared for the ‘grief to resurface’ when treatment ended. Experiences of loss were also shaped by the rarity of molar pregnancy, which had implications for their understanding of the diagnosis and access to support.

Isolation

Apart from two women, the participants had never heard of molar pregnancy before their diagnosis. It had not featured in the books they had read, although they were aware of other forms of miscarriage from the media or pregnancy literature.

‘[I] couldn't even remember the word…it's not something you hear linked with [pregnancy] at all’.

Nat

Fiona felt confused when told about the condition, and Gina felt it was ‘a lot to process’.

Some interviewees and bloggers described negative experiences at initial diagnosis, which largely took place in local facilities.

‘Nothing was really explained…I don't think they quite knew or understood what was going on’.

Juliet

While Annie's sonographer did introduce the possibility of a molar pregnancy, they remarked that they had never seen it before, prompting her to feel lost.

‘It makes you feel like, what's going on? Where am I? What am I doing?’

Annie.

The unfamiliarity with the condition among healthcare professionals led Iris to feel like a ‘guinea pig’

‘I was the only molar pregnancy that the practice or the doctor had ever seen. It was just very isolating’.

Iris

Bea, a participant from the USA, described the experience of her first scan, performed by a trainee and senior clinician.

‘To my horror, [the senior clinician] began talking about me like I was an exhibit…I snapped. I was not an exhibit or an educational purpose. I was a woman who had just found out that her greatest fear was true’.

Bea

Although not all had encountered negative experiences, participants did generally describe a lack of awareness among non-specialist clinical professionals. Annie explained that caregivers at her local unit were unable to give many details, but directed her to the specialist centre, reassuring her that ‘they will know more’. It was only when she reached the specialist centre that she began to understand what was going on. Nat was given out of date information by her initial caregivers. They told her that she would need human chorionic gonadotropin monitoring after every subsequent pregnancy, despite this guidance having changed several years ago.

Such encounters left participants feeling isolated and uncertain, and many turned to the internet to supplement clinical information they received. However, as Annie and Fliss described, this could be frightening, because ‘the first thing that pops up when you Google is it can be a form of cancer’. Fiona was advised by her clinical teams ‘not to Google’ because she had to ‘stay calm’.

The rarity of molar pregnancy also made it difficult to seek emotional support. Participants described a lack of understanding in their social networks, prompting them to take on the role of expert

‘[I was] doing the explaining, giving the science behind the condition’.

Diana

This entailed emotional labour, as they had to clarify their diagnosis before commencing more supportive conversations. Annie felt empathy for those listening to her story, recognising that others didn't always know what to say in response because ‘it is a bit of a sad tale’. Many participants had accessed online support groups, as observers or participants, to learn more about the condition, hear positive stories from others affected by molar pregnancy, and ‘find out about the risks going forward’ (Fiona). These environments could help them feel less alone.

‘There's that instant recognition of what you're going through, how you're feeling, what you've lost, what you want to look forward to, that kind of thing. Everybody understands from the get-go’.

Iris

This sense of mutual understanding was appreciated by all those who had used online forums. Iris still engaged with the forum many years after her molar pregnancy. At the time of her diagnosis, there was ‘nobody for her to talk to’ and she therefore felt it was important that patients raise awareness to help others. Seeking hope and reassurance that they could move forward was also important to many of the participants, whose anticipated futures and perceptions of their bodies had been disrupted by the experience.

Alienation

A feeling of failure was common, linked to dominant portrayals of pregnancy as a linear journey towards the birth of a baby. The participants discussed a feeling of their bodies not doing ‘what it needs to do’ (Fiona). Annie described a ‘dud egg’ as the cause of her complete molar pregnancy, claiming ‘my body had failed us’.

‘Your body's supposed to do something and it can't get it right’.

Joan

Nat described this feeling slightly differently, in terms of the fact that her body did not recognise her partial molar pregnancy, expressing that her body had ‘tricked’ her and ‘let me down’.

While these feelings of disappointment in their bodies resonated with experiences of miscarriage more widely, participants also had to come to terms with the fact that this was not what some termed a ‘normal’ miscarriage. The diagnosis had been a huge shock, with many finding it difficult to reconcile the fact that pregnancy could end in disease. Georgie described this as ‘incredibly cruel’, juxtaposing the ‘few blissful weeks’ she'd spent thinking about a baby with the ‘tumorous cells’ taking its place. This contrast was observed particularly among blog authors, who frequently included short, shocking phrases.

‘My pregnancy ended with cancer’.

Steph

‘Instead of a baby, I had grown a tumour’.

Annie

Unlike other forms of miscarriage, molar pregnancy also entailed more to ‘worry about’, including ‘fear, surgeries, blood tests, ultrasounds, X-rays, cancer and chemo’, which turns your whole life ‘upside down’ (Anita). Annie discussed how the experience was more dangerous than more common forms of loss, and highlighted the impact of treatment and monitoring on future fertility. She frequently tried to make sense of what had happened in her blog and interview. She described being given leaflets on miscarriage at her first scan by a midwife who ‘badly explained’ molar pregnancy.

‘What they gave me was two leaflets about miscarriage, and what miscarriage is, and to this day I've never read those leaflets because in my head, I didn't have a miscarriage. My body hadn't rejected the pregnancy, my body was still growing that pregnancy, it hadn't spontaneously tried to get rid’.

Annie

Perceptions of molar pregnancy as a miscarriage varied among participants. Their accounts challenged dominant perceptions of miscarriage as a one-off event entailing the physical rejection of a pregnancy. Other participants did describe the experience of molar pregnancy in terms of a miscarriage, with Helen and two others characterising molar pregnancy as ‘a miscarriage that wouldn't end’. This feeling was linked to the periods of limbo entailed in diagnosing molar pregnancy, the need to undergo human chorionic gonadotropin monitoring and the possibility of needing further treatment, which could take weeks to confirm.

Follow-up monitoring could also make moving forward difficult for those participants wanting to try for another pregnancy, described by Cath as a much wanted ‘rainbow baby’. Anita said this would help her to ‘heal’, but described ongoing monitoring as a ‘no man's land’ requiring them to wait for ‘time to pass’ to reach the ‘all clear’ before they could try again. However, the desire to conceive was not shared by all participants, or it could shift over time. For example, following her surgical evacuation Annie initially wrote that trying again was the ‘last thing on her mind’. Bea's molar pregnancy followed a previous miscarriage, and she had taken the decision not to try to conceive again.

These results show that widespread depictions of pregnancy as a linear path to birth, and societal understandings of miscarriage as the sudden interruption of this, shaped participants' experiences of molar pregnancy. Contrasts between molar pregnancy and these dominant understandings could be shocking and unexpected, provoking a sense of disappointment with their bodies. As a result of the nature of the condition, these feelings could take a long time to resolve. However, there were positive reflections too. All participants took hope from the fact that molar pregnancy is highly curable, and indeed all were cured. Fiona and Diana, who went on to have further pregnancies, reasoned that without their molar pregnancy they would not have the children they have today. Others discussed feelings of gratitude for an experience that had made them stronger.

Discussion

Molar pregnancy is a rare but highly treatable condition. Although qualitative research is building (Singh et al, 2017), few studies explore in-depth accounts of how women make sense of and experience diagnosis (Ireson et al, 2018). The present study's participants' experiences of molar pregnancy were shaped by dominant sociocultural narratives of successful pregnancy. These women, all happy to be pregnant, described imagining the 9 months of pregnancy or beyond from the point of a positive test. Although some articulated a more tentative approach, fetal development was anticipated by all. Molar pregnancy does not entail viable fetal development, yet the data show that patient experiences were embedded in narratives of pregnancy emphasising a future baby, a finding which can inform practitioner interactions with patients at diagnosis.

Participant accounts resonated with responses to other forms of pregnancy loss, an event often viewed as an ‘unthinkable deviation’ from pregnancy's expected natural progression (Layne, 2003). In highly technologised societies, this coincides with a wider emphasis on women's personal responsibility for the outcome of their pregnancy (Browne, 2022), meaning this event may be accompanied by feelings of guilt and blame (Kilshaw, 2020). This was heard in participant accounts, which represented their bodies as having ‘failed’. These depictions were countered by Annie, who reflected that her body hadn't failed because it was ‘still growing that pregnancy’. The data therefore show that while dominant views of pregnancy and loss shaped participant experiences, these could also be subverted.

Women had varying responses to the nature of their loss. Some conceptualised the loss as cells to help them to manage their emotions (Frost et al, 2007), but others felt the loss more deeply, citing anticipations and dreams of their future child. In some cases, grief did not arise until after treatment. This diversity of understanding is perhaps attributable to the rarity of molar pregnancy. A lack of public stories required participants to make sense of this event on their own terms, drawing on wider narratives of pregnancy and loss, as well as responses from others. This suggests the need for an individualised and responsive approach to patient care at diagnosis, which makes room for experiences of grief, but does not presume this.

Interactions with healthcare professionals could leave lasting impressions on participants. Participants shared stories of non-specialist practitioners who were unable to explain the condition or were unfamiliar with up-to-date guidance. In more extreme cases, women were made to feel like a ‘guinea pig’ or ‘exhibit’ because of its rarity. These accounts support continuing professional development for local healthcare practitioners, working with specialist centres to ensure confidence when communicating a diagnosis of gestational trophoblastic disease and up-to-date knowledge of patient pathways. Indeed, many participants turned to online environments for further information about the condition, which also offered opportunities to share their stories and seek advice from those with shared experience. These findings echo existing literature on internet use and health (Ziebland and Wyke, 2012).

Limitations

Although participants were from settings with comparable clinical approaches to gestational trophoblastic disease diagnosis and management, a limitation of this research is that participants experienced different healthcare systems. They also represented a small sample size, meaning these results are not generalisable to a wider population. However, this is not the purpose of qualitative research, which aims to generate in-depth understanding (Mason, 2002).

Another important consideration is that the sample only represented patients who had welcomed the pregnancy, omitting those for whom pregnancy was not intended, including older women. Despite these limitations, the research has provided rich insight into patient experiences of molar pregnancy and added to qualitative literature on gestational trophoblastic disease.

Implications for practice

This study demonstrated the social factors shaping personal experiences of the condition and diversity of understandings articulated by patients. UK gestational trophoblastic disease specialist centres are working with gestational trophoblastic disease patients to further develop supportive care resources and personalised care pathways, yet periods of limbo still exist creating gaps in the support available. The present study suggests that more research is needed into the resources provided to patients, how patients can be better supported during the ‘limbo’ periods of diagnosis and monitoring, and on the accessibility of up-to-date clinical knowledge and guidance for non-specialist practitioners.

Conclusions

Dominant understandings of pregnancy as a singular path towards birth shaped participants' experiences of molar pregnancy. In making sense of the condition, participants described experiences of loss shaped by this dominant view but also subverted them, showing that they did not make sense of molar pregnancy in a singular way.

An individualised approach is required when communicating with patients about the condition, which takes their lead in terms of the terminology used and is responsive to their emotions. These may or may not include grief, but might also be difficult for patients to articulate. This research also demonstrated the significance of interactions with healthcare professionals at initial diagnosis, with the information they are given and practitioner responses having lasting impacts on women's experiences of molar pregnancy. It is important that practitioners feel confident in discussing the condition with patients and have access to up-to-date guidance. This is supported by the gestational trophoblastic disease treatment centres in London and Sheffield, which offer online resources and study days for clinical professionals.

Key points

• Gestational trophoblastic disease is a rare condition that arises following conception and can lead to serious disease.
• Molar pregnancy is the most common type of gestational trophoblastic disease and may initially be experienced as a ‘typical’ pregnancy.
• Patients affected by molar pregnancy may experience feelings of loss associated with more common forms of miscarriage.
• The rarity of molar pregnancy can impact how patients understand diagnosis and access support.
• Lack of awareness of molar pregnancy could negatively impact patients; it is important that practitioners are aware of the condition and have access to up-to-date guidance.

CPD reflective questions

• Where in their clinical pathway might patients affected by molar pregnancy encounter midwifery practitioners and how can midwives provide supportive care?
• What are some of the barriers faced by midwifery staff in providing supportive care to patients affected by molar pregnancy?
• What resources exist to help midwives support patients with suspected or confirmed molar pregnancy and how easy are these to access?