EP04.08: “The anxiety coming up to every scan – it destroyed me”: a qualitative study of the lived experience of cytomegalovirus infection during pregnancy

To investigate the lived experience of women with suspected cytomegalovirus (CMV) infection during pregnancy to inform future approaches to CMV screening and clinical care. A qualitative study using semi-structured interviews was conducted with Australian women who had a suspected CMV infection following serological testing during pregnancy. Participants were recruited via social media and consumer networks, and purposively selected to capture a range of perinatal outcomes. Interview transcripts were analysed using inductive content analysis. Twelve participants were interviewed: 6 had live births, 4 had terminations of pregnancy, 1 had a neonatal death and 1 was pregnant during the interview. Analysis revealed four main categories. (1) Participants reported a lack of CMV awareness among themselves, their social circles, and health care providers. (2) They described the experience as “hard” and “stressful”, marked by uncertainty in clinical decision-making and anxiety about the long-term impacts of CMV. (3) Women supported screening for CMV and reproductive choice, but acknowledged that routine testing may not be wanted by everyone and may increase stress and terminations of pregnancy. (4) Important coping strategies included personal support from partners, family, and other families with lived experience of CMV, as well as having access to knowledgeable and sensitive healthcare professionals. A serological diagnosis of maternal CMV infection during pregnancy can have severe and prolonged psychological impacts on parents, regardless of the pregnancy outcome. Improving healthcare professionals' knowledge and public awareness is crucial before widespread serological screening can be responsibly introduced. Healthcare administrators considering implementing prenatal screening for secondary prevention of fetal CMV infection should pay attention to consumer perspectives to minimise unintended harms to women and their families.