Från inbjudan till uppföljning : kvinnors erfarenheter av att delta eller inte i cervixcancerscreening

Population-based cervical cancer screening programs (PCCSPs) were introduced in Stockholm in the 1960s; today all women residents aged 23-60 are invited to a cost-free Pap smear at regular intervals. A shift in scientific knowledge has occurred, with clarification of the link between human papilloma virus (HPV) and cervical cancer (CC), and the introduction of HPV-vaccines for primary prevention of CC. While there is a large body of research on CC screening, fewer studies address screening experiences of women in different phases of life with different screening histories. The aim of this thesis was to explore how women reason about CC, its causes, prevention and participation in CC screening.

Method: These studies were guided by the inductive approach interpretive description. Sub-study I is based on qualitative analysis of 12 telephone interviews and 86 fax messages sent to the screening organisation by women who actively chose not to participate in PCCSP. Sub-study II is based on longitudinal interview data from 30 women, who underwent medical follow-up of an abnormal Pap smear. Sub-studies III and IV are based on data from 30-year old women with varied screening background and experiences, derived from 9 face-to-face focus group discussions (FGD) (sub-studies III, IV) and 30 internet-based FGDs (sub-study IV).

Results: Women s ways of conceptualizing health, illness, and risk for disease in general impacted on their decision-making about attending PCCSP. Matters related to sickness, including CC and its prevention, were generally described as distant and unprioritized by many women. The manner 30-year old women self-defined themselves in the transition between youth and adulthood appears to strongly influence their reasoning not only about PCCSP, but also about other forms of health maintenance and disease prevention. How women defined and conceptualized distinctions between, and roles and responsibilities of, the private and the public was also found to be central in explanations of decision-making, especially among women who actively chose not to take a Pap smear. Women described a wide range of factors which could motivate them to participate in PCCSP, related to all aspects of the program, from invitation through follow-up, and a need for different types and forms of information. Many suggestions were related to individualization of the PCCSP; a need to understand the relationship between HPV and CC also was addressed. We also found that medical follow-up of an abnormal Pap smear involved an experience of both 'having' and 'being' a body, which changed over time. The conceptualization of bodily boundaries appeared to change, e.g. through vaginal discharges and bleeding, as well as linkages to the bodies of women in their extended families through the generations.

Conclusion: All facets of the PCCSP and social marketing were found to influence women s experiences of and decisions about screening attendance. Women s views of the PCCSP as a comprehensive system suggest a need for increased collaboration among the many professionals with direct and indirect involvement in the PCCSP. These studies suggest that coordination with and information about PCCSP is an important implication for when initiating HPV vaccination programs, as a means of aiding women in integration of different types of knowledge and information.

List of scientific papers

I. Blomberg K, Ternestedt BM, Törnberg S, Tishelman C (2008). How do women who choose not to participate in population-based cervical cancer screening reason about their decision? Psychooncology. 17(6): 561-9
https://pubmed.ncbi.nlm.nih.gov/17886262

II. Blomberg K, Forss A, Ternestedt BM, Tishelman C (2009). From silent to heard: professional mediation, manipulation and womens experiences of their body after an abnormal Pap smear. Soc Sci Med. 68(3): 479-86. Epub 2008 Dec 10
https://pubmed.ncbi.nlm.nih.gov/19081661

III. Blomberg K, Widmark C, Ternestedt B-M, Törnberg S, Tishelman C (2009). Between youth and adulthood: Focus group discussions with 30-year old women about cervical cancer and its prevention in urban Sweden. [Submitted]

IV. Blomberg K, Tishelman C, Ternestedt B-M, Törnberg S, Levál A, Widmark C (2009). How can young women be encouraged to attend cervical cancer screening? Suggestions from face-to-face and internet focus group discussions with 30 year old women in Stockholm, Sweden. [Submitted]