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

ATTITUDES toward pregnancy; MISCARRIAGE; SELF-evaluation; HEALTH literacy; ATTITUDES toward illness; RESEARCH funding; QUALITATIVE research; MOLAR pregnancy; INTERVIEWING; SOCIAL alienation; RARE diseases; HELP-seeking behavior; PERINATAL death; SOCIAL attitudes; BEREAVEMENT; THEMATIC analysis; RESEARCH methodology; SOCIAL support; DATA analysis software; SOCIAL isolation; GESTATIONAL trophoblastic disease; HOPE

AUSTRALIA; CANADA; UNITED States; UNITED Kingdom

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. [ABSTRACT FROM AUTHOR]