References

Blok LJ, Frijstein MM, Eysbouts YK The psychological impact of gestational trophoblastic disease: a prospective observational multicentre cohort study. BJOG. 2022; 129:(3)444-449 https://doi.org/10.1111/1471-0528.16849

Braun V, Clarke V Using thematic analysis in psychology. Qual Res Psychol. 2006; 3:(2)77-101 https://doi.org/10.1191/1478088706qp063oa

Browne V Pregnancy without birth: a feminist philosophy of miscarriage.London: Bloomsbury; 2022

Cecil R The anthropology of pregnancy loss: comparative studies in miscarriage, stillbirth and neonatal death.Oxford: Berg; 1996

Cox SE Changing the miscarriage story. Br J Midwifery. 2022; 30:(7)366-367 https://doi.org/10.12968/bjom.2022.30.7.366

Flam F, Magnusson C, Lindstedt VL, von Schoultz B Psychosocial impact of persistent trophoblastic disease. J Psychosom Obstet Gynaecol. 1993; 14:(4)241-248 https://doi.org/10.3109/01674829309084447

Frost J, Bradley H, Levitas R, Smith L, Garcia J The loss of possibility: scientisation of death and the special case of early miscarriage. Sociol Health Illn. 2007; 29:(7)1003-1022 https://doi.org/10.1111/j.1467-9566.2007.01019.x

Ireson J, Jones G, Winter MC, Radley SC, Hancock BW, Tidy JA Systematic review of health-related quality of life and patient-reported outcome measures in gestational trophoblastic disease: a parallel synthesis approach. Lancet Oncol. 2018; 19:(1)e56-e64 https://doi.org/10.1016/S1470-2045(17)30686-1

Ireson J, Singh K, Gillett S Evolution of a specialist gestational trophoblastic disease service with a major nursing component: the Sheffield, United Kingdom, experience. J Reprod Med. 2014; 59:(5-6)195-198

Joyce CM, Fitzgerald B, McCarthy TV, Coulter J, O'Donoghue K Advances in the diagnosis and early management of gestational trophoblastic disease. BMJ Med. 2022; 1:(1) https://doi.org/10.1136/bmjmed-2022-000321

Kilshaw S Introduction: ambiguities and navigations. In: Kilshaw S, Borg K (eds). New York: Berghahn Books; 2020

Layne LL Motherhood lost : a feminist account of pregnancy loss in America.New York, NY: Routledge; 2003

Lovell A Some questions of identity: late miscarriage, stillbirth and perinatal loss. Soc Sci Med. 1983; 17:(11)755-761 https://doi.org/10.1016/0277-9536(83)90264-2

Mason J Qualitative researching.Thousand Oaks, CA: Sage Publications; 2002

Melo P, Granne I Does twenty-first-century technology change the experience of early pregnancy and miscarriage?. In: Kilshaw S, Borg K (eds). New York, Oxford: Berghahn; 2020

Middlemiss A Pregnancy remains, infant remains, or the corpse of a child? The incoherent governance of the dead foetal body in England. Mortality. 2021; 26:(3)299-315 https://doi.org/10.1080/13576275.2020.1787365

Middlemiss AL, Kilshaw S Further hierarchies of loss: tracking relationality in pregnancy loss experiences. Omega (Westport). 2023; 0:(0) https://doi.org/10.1177/00302228231182273

Ngan HY, Tang GW Psychosocial aspects of gestational trophoblastic disease in Chinese residents of Hong Kong. J Reprod Med. 1986; 31:(3)173-178

Parker VL, Tidy JA Current management of gestational trophoblastic disease. Obstet Gynaecol Reprod Med. 2021; 31:(1)21-29 https://doi.org/10.1016/j.ogrm.2020.11.006

Petersen RW, Ung K, Holland C, Quinlivan JA The impact of molar pregnancy on psychological symptomatology, sexual function, and quality of life. Gynecol Oncol. 2005; 97:(2)535-542 https://doi.org/10.1016/j.ygyno.2005.01.015

Qureshi K Some babies cannot be stopped from falling: miscarriage in Pakistani Punjab. In: Kilshaw S, Borg K (eds). New York: Berghahn Books; 2020

Royal College of Obstetricians and Gynaecologists. Late intrauterine fetal death and stillbirth: green-top guideline no. 55. 2010. https//www.rcog.org.uk/guidance/browse-all-guidance/green-top-guidelines/late-intrauterine-fetal-death-and-stillbirth-green-top-guideline-no-55/ (accessed 11 June 2024)

Royal College of Obstetricians and Gynaecologists. Management of gestational trophoblastic disease: green-top guideline no. 38. 2020. https//www.rcog.org.uk/guidance/browse-all-guidance/green-top-guidelines/gestational-trophoblastic-disease-green-top-guideline-no-38/ (accessed 11 June 2024)

Saldaña J The coding manual for qualitative researchers.Thousand Oaks, CA: Sage; 2021

Seckl MJ, Sebire NJ, Berkowitz RS Gestational trophoblastic disease. Lancet. 2010; 376:(9742)717-729 https://doi.org/10.1016/S0140-6736(10)60280-2

Singh K, Warnock C, Ireson J, Strickland S, Short D, Seckl M, Hancock B The experience of women with gestational trophoblastic neoplasia treated with high dose chemotherapy and stem cell rescue; a qualitative study. Oncol Nurs Forum. 2017; 44:(3)375-383 https://doi.org/10.1188/17.ONF.375-383

Winter GF Miscarriage. Br J Midwifery. 2022; 30:(2) https://doi.org/10.12968/bjom.2022.30.2.118

Ziebland S, Wyke S Health and illness in a connected world: how might sharing experiences on the internet affect people's health?. Milbank Q. 2012; 90:(2)219-249 https://doi.org/10.1111/j.1468-0009.2012.00662.x

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

02 July 2024
Research
02 July 2024
Volume 32 · Issue 7

Abstract

Background/Aims

Molar pregnancy is a rare complication of pregnancy. Patients face surgery, human chorionic gonadotropin monitoring and potentially systemic treatment, resulting in unique support needs. This study's aim was to explore the impacts of gestational trophoblastic disease on embodied and emotional experience.

Methods

This qualitative study considered stories of molar pregnancy from 20 women in the UK, US, Canada and Australia. These were drawn from 18 publicly available online blogs and eight semi-structured interviews, and analysed thematically.

Results

Three themes were developed: ‘loss’, describing women's responses to their pregnancy ending; ‘isolation’, comprising ‘rarity’, ‘lack of awareness’ and support seeking; and ‘alienation’, capturing the unfamiliarity of diagnosis, ‘failure’ and barriers to ‘moving forward’.

Conclusions

Experiences are shaped by wider narratives of ‘typical’ pregnancy. Patient care requires an individualised and responsive approach, and non-specialist practitioners should feel confident in discussing molar pregnancy and have access to up-to-date guidance.

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.

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Gestational trophoblastic disease
Molar pregnancy
Pregnancy loss
Qualitative research