Women’s encounters with biomedical technology in the realm of cervical cancer screening

Abstract

As a form of biomedical technology, the Papanicolaou (Pap) smear has been described as the most widely used and established cane er- screening tool in the world. In Sweden, Pap smear technology triggered what is today an established secondary preventive intervention directed towards 'healthy' women to detect those at risk for developing cervical cancer, a potentially fatal disease, as well as those with the disease. Sweden has been described as one of the countries where mortality in cervical cancer has decreased due to a well-organised screening programme. Cervical cancer screening (CCS) encompasses a broad spectrum of phenomena that ranges from the cellular level to populations of 'healthy' women and various professional groups and academic disciplines thus perform, study, and regulate CCS. The overall aim of this thesis is to explore and describe how women create meaning in the encounter with biomedical technology at various sites associated with population based cervical cancer screening (PCCS) with focus on health, normality and risk for disease. Multi-sited ethnography was used to conceive of PCCS as one field of inquiry although performed at and dispersed among multiple sites. The cytodiagnosticians, who assess the Pap smears and do not meet the women in the target population, have a central but understudied role in CCS. For the women whose cells have been examined, deviations on the level of cells have to be rendered meaningful in regard to their own health and illness, despite a lack of experientially matching symptoms. The thesis is composed of a methodological and theoretical paper (Paper I) and three empirical studies (Papers II, III and IV), conducted in conjunction with a large-scale multi disciplinary project investigating PCCS from "lay" and "professional" perspectives through a series of studies.

In Paper I the role of the research assistant in multidisciplinary team research, conducting interviews on sensitive topics, and the notion of informed consent in institutional sites, are among the issues highlighted and problematised. Paper II is based on interviews with women at three screening venues chosen for demographic variation. The modified phenomenographic analysis highlights four qualitatively different ways of reasoning about attendance and the Pap smear, with only one similar to the biomedical rationale for screening with focus on attending for the test/results. Some shared themes are also described, e.g. the notion of early detection of disease and familiarity with biomedical technology and controls of the 'healthy' body. Paper III is based on one year of fieldwork conducted at two cytology laboratories. The manuscript is an ethnographic description of the personnel's daily work and analysis of the Pap smears. The personnel's work and skills with enhancing the cytology sample's trajectory; assessing and classifying normal cytology, and; detecting and marking abnormal cells are analysed and described focussing on order and disorder, classification, visual knowledge and biomedical technology. By assessing and classifying normal cytology, differentiating between normal and abnormal cells and suggesting classifications of the grades of abnormal cells, the cytodiagnosticians partake in creating order among cells. In Paper IV a phenomenological hermeneutical method was used as a strategy to explore and describe how women experience receiving notification on abnormal Pap test results through the PCCS.

Women's experiences in receiving abnormal Pap smear test results are presented in two themes: Pap smear for routine and recurrent confirmation of health, and ambiguous communication about Pap smear results. The themes are discussed as an unintentional transition from health to liminality, as the women expected the Pap smear to confirm health, but instead neither health nor disease was confirmed or excluded. Thus, the discovery of abnormal cells did not create order for the women, as disorder had generally not been experienced. The thesis discussion synthesises similarities and differences in and between the studies e.g. in regard to the notion of early detection of disease and the role of routinisation. These similarities and differences are discussed in relation to current research, discourses and policy documents on CCS in general and PCCS in particular.