Cervical cancer screening. Knowledge, attitudes and experiences among women and midwives

Abstract: Population based cervical cancer screening (CCS), performed by midwives, to detect cellularatypia before it develops into cancer, has been in force in Sweden since the 1970s. Thepositive effects of the subsequent decline in morbidity and mortality due to cervix cancer arewell documented but does screening also have negative consequences?Aims: To investigate knowledge about, attitudes to and experience of CCS (i) among womenin general, (ii) among women with experience of two mildly atypical Pap smears, (iii) amongwomen diagnosed with cervical cancer and (iv) among midwives who manage CCS.Populations and methods: Paper I, II and IV; A questionnaire was constructed comprisingof structured and open questions. Paper I was mailed to 400 women, 23 59 years old,randomly selected using the National population register. Paper II; A questionnaire wasmailed to women (n = 329) who according to the Department of Clinical Pathology five yearsearlier had two consecutive atypical Pap smears interpreted as CIN 1. For Paper III an openendedinterview, inspired by Grounded Theory was performed with eleven women, who hadbeen diagnosed with cervical cancer two years earlier. Paper IV; A questionnaire was mailedto 201 midwives working in primary health care managing the programme.Results: Paper I: Sixty-two percent of the women could indicate the site of the cancer thescreening actually examined. Only a few women connected cellular atypias with sexuallytransmitted infections and were aware of the partly protective effect of a condom. Women sknowledge and experiences were age dependant. Paper II: Memories of initial worry andanxiety when women were told about the atypical smear were reported by 59%. Most womendid not report any signs of anxiety five years later, but 8% reported a persistent negativeinfluence on their sexual life. Paper III: Screening for better or worse was identified as thecore category around which the categories unawareness , trust , search for understanding and making the invisible, visible was integrated and on which the conceptual model wasbuilt. In all the above studies, most women felt well taken care of by health care professionalsand they wanted to participate. Personal communication with midwives and doctors wasreported as the most important source of information about CCS. Even the women treated forcancer had a positive attitude to CCS, but they were negatively influenced by theirunawareness. Most women looked upon further Pap smears with a sense of security and hadtrust in health care. Paper IV: Midwives lacked guidance when informing about CCS andcytological atypias but most of them did not report a lack of theoretical knowledge. Midwivessaw themselves as the main informant about CCS but nevertheless they perceived women tolack knowledge about it.Conclusions: Women had a positive attitude to screening and wanted to attend. As long asthey were confirmed as healthy they did not engage themselves in information. The midwiveshad difficulties with evidence based explanations concerning screening and cervicalcytological atypias. The information given did not seem to reach women. A more empoweringmeeting where both midwives and women are more deeply engaged may improve the qualityof communication. We propose the introduction of an initial, longer scheduled meeting,within the screening programme as a new approach to enhance knowledge and motivation