Lay Women’s Understandings of Cervical Cancer Dr Natalie Armstrong Health Sciences Research Institute Warwick Medical School

Background One element of wider study on women’s experiences and perspectives on cervical cancer screening One element of wider study on women’s experiences and perspectives on cervical cancer screening Focus here on how women understand cervical cancer, and interplay between professional and lay perspectives Focus here on how women understand cervical cancer, and interplay between professional and lay perspectives Framed by theoretical work on resistance Framed by theoretical work on resistance

Lay and Professional Perspectives Lay perspective Lay perspective - specific ontological purpose, narrative form Professional perspective Professional perspective - rooted in concept of disease (Williams and Popay 1994, 1996; Popay et al. 1998; Blaxter 1983) Although clearly not distinct and separate… Although clearly not distinct and separate…

Interplay Between Them Public surrounded by professional concepts so difficult for lay perspective to develop independently (Helman 1978; Shaw 2002) Public surrounded by professional concepts so difficult for lay perspective to develop independently (Helman 1978; Shaw 2002) But professional concepts likely to be interpreted and made sense of in terms of everyday life experience (Davison et al. 1991) But professional concepts likely to be interpreted and made sense of in terms of everyday life experience (Davison et al. 1991) How do lay women make sense of official information on cervical cancer? How do lay women make sense of official information on cervical cancer?

Methods Professional perspective as ‘official’ information leaflet produced centrally and sent out with invitations Professional perspective as ‘official’ information leaflet produced centrally and sent out with invitations Lay perspective as data from individual interviews with women invited to attend for screening Lay perspective as data from individual interviews with women invited to attend for screening years years years White British 445 South Asian 443 African Caribbean 443

Cervical cancer is more common if you… First had sex at an early age First had sex at an early age Smoke Smoke Do not use condoms Do not use condoms Have had several sexual partners or have had a partner who has had several other partners Have had several sexual partners or have had a partner who has had several other partners Take immunosuppressant drugs (for example, after an organ transplant) Take immunosuppressant drugs (for example, after an organ transplant) (Cervical screening THE FACTS, 2002) Smoke First had sex at an early age Have had several sexual partners or have had a partner who has had several other partners Take immunosuppressant drugs (for example, after an organ transplant) (CERVICAL SCREENING The Facts, 2006)

Lay Perspectives on Risk Factors Sexual Activity Sexual Activity Childbirth Childbirth Menopause Menopause

Sexual Activity ‘well no no no, it doesn’t work like that…you know, because you haven’t had lots of partners it doesn’t mean to say that she’s not having lots of sex with David, you know it’s the same difference isn’t it, you know, you could have twice a day, you know, with David and maybe if she didn’t have David have, you know, two or three partners every fortnight so it doesn’t really make any difference does it?’ (Davina, years, White British) ‘it doesn’t matter, it’s not all to do with sexual partners, it’s to do with the change in your cervical cells, it doesn’t matter at all…you might do it in different positions and that might have a different effect on how your cervix is…’ (Zena, years, White British)

Childbirth “it was after having my first child, because you had to, it was part of after having a baby, it’s part of an ongoing thing after. That’s when it kicks in. You have your six week check-up and everything and then the first letter comes so you need a cancer smear” (Heather, years, African Caribbean) ‘well I would say to her, because obviously she hasn’t got a child yet, I’d say wait until she has a baby and then it will all fall in to place…I would say to Jessica monitor it, if she hasn’t had a child by the time she’s 30 then go and have a smear test just to check everything is alright, I wouldn’t necessarily say every three years if it was normal’

Menopause ‘well yes, a lot happens to your body between 40 and 50 and you get a lot of changes and erm, you know, hormones, you know, hormone changes kick anything in…all kinds of ailments seem to happen between 40 and 50. It’s just a woman’s age you know’ (Alice, years, White British)

Silence on Smoking Only mentioned during accounts of how women looked after their general health Only mentioned during accounts of how women looked after their general health Smoking is not a risk factor validated by women in my research Smoking is not a risk factor validated by women in my research Why? Failure to establish a causal pathway? Why? Failure to establish a causal pathway? Does this influence how women interpret health promotion messages, and whether they act on them? Does this influence how women interpret health promotion messages, and whether they act on them?

Conclusions? Complex interplay of lay and professional Complex interplay of lay and professional Resistance located at level of interpretation and understanding Resistance located at level of interpretation and understanding More active engagement rather than simple acceptance More active engagement rather than simple acceptance Women develop and advance alternative discourses Women develop and advance alternative discourses This opens up space between discourse and individual This opens up space between discourse and individual