Romania has Europe’s highest incidence and mortality of cervical cancer. A national screening programme targeting women aged 25 to 64 with conventional cytology 5 yearly was started in 2012. Primary sample takers are gynaecologists (66%) and GP's (34%). With referral from a GP, testing is free, as is treatment, if cancer is diagnosed. However, re-testing and follow-up of precancerous lesions is not covered. By 2015, 20% of eligible women in Cluj County had participated in the programme, but women without health insurance, from rural areas, and belonging to ethnic minorities, seldom attend screening. We studied possible barriers to participation among Roma.
In 2015, we carried out participant observation, qualitative interviewing, and focus group interviews among Roma in Cluj and Bucharest. Qualitative content analysis was carried out.
A fundamental barrier to participation was that the screening programme was almost entirely unknown among Roma women. Moreover, when told that the programme was indeed in existence and that primary testing was free, women assumed it was not meant for them. This impression arose from knowledge of women who had taken Pap smears and had had to pay for them. The ubiquity of this impression raise questions about how well known the programme was among gynaecologist and GP's, and to what degree it was being executed according to intentions. While some had good knowledge about cervical cancer, a large majority had very limited insight into medical knowledge about the condition. Yet, almost everyone knew that cervical cancer is potentially serious, and it was a widely shared view that screening would be a very good thing. “If people knew about this, everyone would participate," was the consensus in one focus group. However, that participation and follow-up should be free was considered extremly important. Most women were poor and did not have health insurance, and many worried they would not be able to afford care. Significant uncertainties also emerged about how a screening programme would engage with the Roma community as many had experienced discrimination in health care system and expressed doubts about whether healthcare workers in a screening programme would treat them well
There appeared to be no lack of interest in screening. However, there is a need for information about the programme and how it works, and for positive relation-building with Roma communities. Since familiarity with medical knowledge about cervical cancer was low, the program should make information on the condition widely available. To make re-testing and follow-up of precancerous lesions free, would seem to be important for screening success.