Controversies about cervical cancer screening: A qualitative study of Roma women's (non)participation in cervical cancer screening in Romania

•Focuses on issues limiting access to care for Europe's largest ethnic minority.•Finds major differences in perspectives on screening between users and providers.•Demonstrates the significance of speaking to the interests of health service users.•Problematizes use of “barriers” as analytical concept in cancer screening research.•Exemplifies the analytical utility of searching for controversies in health research.

Romania has Europe's highest incidence and mortality of cervical cancer. While a free national cervical cancer-screening programme has been in operation since 2012, participation in the programme is low, particularly in minority populations. The aim of this study was to explore Roma women's (non)participation in the programme from women's own perspectives and those of healthcare providers and policy makers. We carried out fieldwork for a period of 125 days in 2015/16 involving 144 study participants in Cluj and Bucharest counties. Fieldwork entailed participant observation, qualitative interviewing and focus group discussions. A striking finding was that screening providers and Roma women had highly different takes on the national screening programme. We identified four fundamental questions about which there was considerable disagreement between them: whether a free national screening programme existed in the first place, whether Roma women were meant to be included in the programme if it did, whether Roma women wanted to take part in screening, and to what degree screening participation would really benefit women's health. On the background of insights from actor-network theory, the article discusses to what degree the programme could be said to speak to the interest of its intended Roma public, and considers the controversies in light of the literature on patient centred care and user involvement in health care. The paper contributes to the understanding of the health and health-related circumstances of the largest minority in Europe. It also problematizes the use of the concept of “barriers” in research into participation in cancer screening, and exemplifies how user involvement can potentially help transform and improve screening programmes.