Background
The leading cause of death in developed countries is cancer [
1]. After breast and colorectal cancer, cervical cancer is considered to be the third most prevalent cancer in women [
1],[
2]. In fact, one in ten diagnosed cancers in women are that of the cervix [
3] resulting in 275,000 deaths worldwide in 2008 [
2],[
4]. Cervical cancer is often diagnosed in young adult women whom are often primary carers for their families or actively involved in their careers [
2]. Women who survive cervical cancer often have ongoing physical problems such as bladder and bowel dysfunction and painful sexual intercourse, which can have a calamitous effect on their quality of life [
5].
The Papanicolaou test (Pap test or Pap smear) is an effective and important screening tool used worldwide to detect pre-cancerous cervical abnormalities that can be treated early to prevent the progression to invasive carcinoma [
6]-[
8]. Since the introduction of regular screening with the Pap test, the incidence of cervical cancer and mortality rates worldwide have declined substantially [
6]. This decline has also occurred in Australia, however, in 2009 there were 631 new cases diagnosed and in 2010, 152 deaths resulting from cervical cancer [
9].
In Australia, the goal of the National Cervical Screening Program is to decrease morbidity and deaths from cervical cancer through a systematic approach to cervical screening, aimed at identifying and treating irregularities before potentially developing into cervical cancer [
9]. Australia’s national policy for screening recommends that “all women who have ever been sexually active should start having Pap smears between the ages of 18–20, or one to two years after having sexual intercourse, whichever is later” [10 p. 5]. The cervical cytology program is crucial to Australia’s cervical screening program as it provides reminder letters to women who are overdue for screening, collaborates with health care professionals to ensure women who have had an abnormal result have received adequate follow up care, as well as providing a registry with data and history for the national monitoring of the program [
10]. However, this program is only effective at reaching women who have participated in cervical cancer screening.
Pap smear screening rates have been shown to vary between different socio-demographic groups. Studies have shown that women who are less educated, have a low socioeconomic status, live in rural areas or are older, tend to have lower rates of cervical screening [
6],[
7]. Further, subpopulations have been identified as having lower cervical screening rates than the general population, such as those from racial/ethnic minority groups [
11], women with developmental or physical disabilities [
12]-[
15], and women who identify as being lesbian [
6],[
11],[
16].
Previous research has fuelled a common belief that sexually transmitted infections (STIs) are scarcely transmitted between lesbians [
17]-[
19]. This has contributed to the limited research that focusses on the health risks encountered by them, including their practices of cervical cancer screening [
20],[
21]. However recent data strongly supports that STIs are common in lesbians with substantial evidence that transmission occurs through lesbian sexual contact [
18]. Despite these recent findings, lesbians and health professionals alike reportedly lack awareness of the possibility of STI transmission during woman to woman sexual contact.
The lack of knowledge regarding mode of transmission of STIs by both lesbians and health care professionals has been identified as a significant barrier to cervical screening [
22]. A contributing factor to the lack of awareness could be that the sexual practices of lesbians have been compared to that of virgins or nuns [
23], whilst research conducted by Barnes found as many as 30% of lesbians studied were unaware that HPV could be spread from woman to woman during sexual activity [
24]. As human papillomavirus (HPV) is considered to be transmitted predominately through heterosexual penetrative intercourse [
25], lesbians are often thought to be at lower risk of cervical cancer than heterosexual women [
26]. Therefore many health care professionals remain unaware of the importance of cervical screening in this group [
27],[
28]. However this is not the case as shown in Grindel, et al’s study of 1139 lesbians, 79.6% of participants reported having an abnormal pap smear, with several other studies documenting cases of cervical cancer in lesbians who have never had heterosexual sex [
17],[
23],[
29],[
30].
While several studies have identified significant disparities between the cervical screening rates of heterosexual and lesbian women [
6],[
31]-[
33], further research is required to identify why such disparities occur. The aim of this paper is to highlight attitudes and practices of lesbians related to cervical cancer screening.
Results
In total, nine women who self-identified as lesbians volunteered to participate in the study. Of these, two had never been screened for cervical cancer, four had been screened once, and three were screened on a regular basis (Table
1). The data analysis of the qualitative data resulted in four themes that encapsulated the attitudes and practices of lesbians related to cervical cancer screening. The first theme, ‘Encountering cervical cancer’ highlights that although some participants had friends or family that had been diagnosed with cancer, this experience had mixed effects on their own screening practices. The second theme, ‘Misconceptions related to risk’ highlighted misunderstandings held by participants, their friends and family and some health professionals about the necessity for lesbians to undergo cervical screening. The third theme ’Imposed screening’, highlights that those participants trying to have children, especially through in vitro fertilisation (IVF), have required by their clinics or doctors to undertake a cervical screen before treatment. All of the participants who had undertaken cervical screening as a requirement of receiving assisted reproductive technology (ART) stated they would have not done so otherwise. The final theme, “Promoting cervical screening”, highlights participants’ reflections after participating in the study and their acknowledgement of the need for more education and health promotion related to cervical cancer screening.
Table 1
Participant demographics
Sophie
| Early 20s | Australia | Health-related work | Yes | Once only, intent to screen regularly | Living with a partner who has children from previous heterosexual relationship | No |
Olivia
| Mid-20s | Australia | Health-related work | Yes | Once only several years ago | Living with a partner | No |
Kayla
| Mid-20s | Australia | Non-health-related work | Yes | Regular screening | Living with a partner | No |
Anna
| Mid-20s | Overseas | Health-related work | Yes | Regular screening | Living with a partner | No |
Amelia
| Mid-30s | Overseas | Not in paid work, a student | Yes | Once only, no intention for regular screening | Living with a partner, with two children | Yes |
Grace
| Mid-30s | Australia | Not in paid work, 4 children | No | Regular screening | Living with a partner, with children | Yes |
Charlotte
| Mid-30s | Australia | Non-health-related work | No | Never and no intention to do so | Living with a partner with 2 non-biological children | Yes |
Molly
| Late 30s | Australia | Non-health-related work | No | Once only, intent to screen regularly | Living with a partner | No |
Skye
| Early 40s | Australia | Health-related work | No | Never and no intention to do so | Living with a partner | Yes, partner undergoing fertility treatment |
Encountering cervical cancer “My friends had some early cancer cells detected”
Most of the women who participated in this study had encountered cervical cancer at some stage of their lives. These encounters were through the diagnoses of partners, friends or family members. Some of the women who participated in this study had friends or partners that had cervical cancer detected early, and this motivated them to initiate screening. Sophie and Grace conveyed this sentiment in the following quotes.
One of my ex partners had trouble in the past with pre-cancerous cells. She had an irregular pap smear before I was with her sexually but she had a pap smear while we were together and it was irregular, so I thought it was quite important that I go and check, thankfully it was all fine. So that really made me want to go, but I was a bit ignorant prior to that. (Sophie)
Two of my friends had some early cancer cells picked up in theirs so it’s just kind of like you know something you do just…to be sure (Grace)
However, despite having a family history of cervical cancer some participants chose not to be screened or have regular preventative screening. Charlotte conveys:
I understand my mother has had cervical cancer, my sisters have, I understand all of that it runs in the family you know (Charlotte)
Despite this Charlotte continues not to screen and when asked why, she explains that she did not consider herself at risk of cervical cancer as relates such risk with sexual relations with a male and promiscuity.
‘cause my grandmothers were fine, my mother was a bit of a tramp, my sisters a tramp and so I think multiple partners and multiple I don’t know it could be something to do with that you know and I’m not like that and I haven’t been with a guy or had multiple partners (Charlotte)
Olivia, who has only ever been screened once, also had family members with a history of abnormal cervical screening results. Despite this knowledge, the following excerpt indicates her perception that she is not at risk, seemingly conveying her belief that a biological link is a greater indicator of risk than sexual contact.
When I first got one done [cervical screen] I pretty much had my mother in my ear telling me that we all need to get pap smears cause I have two sisters and it’s been like her mantra that we must have a pap smear because she has had she had a bit of a scare when she was younger…we are not her biological [children] (laughs) so you know I am safe (laughs) …actually her biological daughter did have the same thing, it’s like the HPV virus but they burn out (Olivia)
There was some incongruity between what the women vocalised and their screening practices. This was due to multiple factors, including confusion around sexual practices and their perceived risk of being diagnosed with cervical cancer due to the transmission of HPV. Adding to participants’ confusion was the Australian national policy for cervical cancer screening. These guidelines advise women to commence cervical screening at 18 years of age or two years after becoming sexually active, whichever comes first. This raised questions from participants regarding what constituted ‘sexual activity’ in this context. Olivia who has only undertaken taken cervical screening once explained:
I think that’s where it comes into play as well this whole idea that and I have had this question all throughout my life of where but you haven’t really had sex or have you actually had sex though?....and that’s what I think too and maybe that’s something that kind of contributes to that because lesbian sex isn’t considered…because it’s not penetrative you know man, woman, sex (Olivia)
A common belief amongst participants was the misconception that HPV was transmitted only via men. They perceived that because they were lesbians and not having sexual intercourse with men, they were not at risk of contracting HPV and were subsequently not required to undertake cervical screening. The following excerpts illuminate this perception shared by Molly and Skye.
Yeah well I was under the impression that because I had never had sex with a bloke that I didn’t need to have one [Pap smear] (Molly)
I think lesbian women who have been previously sexually active with a male who may have come in contact the HPV virus, which is what my understanding one of causes cervical cancer definitely would be important, however for lesbians who may have never had any sexual contact with male sexual intercourse I don’t think it’s important (Skye)
The belief held by these women that men’s body fluids were the main vectors of HPV extended to all STIs with the majority of participants believing that the spread of STIs from woman to woman was not likely.
I think if you have unprotected sex with a guy then there is a higher risk of contracting something than if you have a night out with a girl and take her home, because really there is no, well in my experience there is not that much contact between you know a little bit obviously (laughs) let’s not get that into it but you know there’s not so much interaction between those parts that would transmit I suppose that (Olivia)
Most lesbians don’t touch parts for there to be that transfer [of body fluids] so if you were using your hands you would wash them and if you were using implements you would wash them so I would never use the same implement as someone else with stuff on it so our juices would never touch in way and her juices would not touch my private parts if that makes sense (Molly)
Due to participants’ perceptions that their risk of contracting a STI was reduced, they reported not practising safe sex, which places them at a higher risk of contracting HPV. This is illustrated in the following quote by Olivia.
There is not this big thing on STDs (sexually transmitted disease) [for lesbians] that there seems to be on more heterosexual communities…like I know that it doesn’t stop you from getting STDs and stuff from being with women but I am guilty of doing the whole…like not assuming that a female could actually pass on something to me. I don’t know maybe it’s not stressed as much in our circles that you need to use protection because I would be offended if someone took like you know those dams [dental dam] and stuff I would be pretty offended if someone took one of those out (Olivia)
Of additional concern was the fact that the misconception held by participants that lesbians were not at risk of cervical cancer, and therefore did not require preventative screening, often stemmed from advice offered by their health care providers. Participants reported being told by health professionals that they did not need to undertake cervical screening because they had not had sexual intercourse with men. This information was readily accepted by these women and as a consequence, some participants had never had a Pap test. Amelia, has only ever untaken one cervical screen after the birth of her first child. Here she discusses the information she received from a doctor advising her that because she was a lesbian she did not require cervical screening.
I have had doctors think that it’s not even necessary for lesbians like the first doctor I ever brought it up to, I must have been 18 and he was like oh no you don’t need one because I didn’t have sex with a man and I yeah so you know and at 18 I was pretty happy to take that explanation (laughs) and run away, yeah it was good enough for me (laughs) (Amelia)
Skye, who had never been screened nor had any intention to be screened talks about receiving information on not requiring screening as a lesbian.
I did some research and spoke to a few Doctors because I was working in the department of medicine and I told them that I had never been sexually active with a male and they said that I didn’t need to have a pap test, which was probably twenty odd years ago. (Skye)
Misunderstanding regarding the necessity for cervical cancer screening also extended to family and friends. Many of the women who participated in this study also relied on their mothers, sisters and female friends for advice on whether they needed to screen or not.
So it might have been a discussion between my mum and sister about pap smears and I’m like ‘ha sucked in you guys have still got to get pap smears’ and they were like’ yeah you lucky bitch you don’t have to’ (Molly)
Imposed screening: “It’s a requirement of IVF treatment”
Some participants indicated that the only reason they had undertaken cervical cancer screening was to comply with pre-treatment requirements for assisted reproductive technology (ART) or routine screening during and after pregnancy. None of the participants who were undertaking or had undertaken ART had been screened prior to commencing treatment.
[I have a Pap test] Generally every two years but it’s a requirement of IVF treatment that you have one before you commence treatment, so whether you have had one 6 months ago, 12 months ago or whatever the fertility clinic that we use it’s a requirement that you have one within sort of the last two to three months before you commence treatment. (Grace)
They [doctors] were fairly forceful about getting it [Pap smear] after pregnancy they really pushed and I did it. (Amelia)
Participants also mentioned they had a number of friends who were undergoing ART who had previously never undertaken cervical screening and would have not done so if it was not for the requirement of the IVF clinic.
It’s a case with some of my friends that I do know that until they started the process of IVF they hadn’t had one [cervical screen] you know one of my friends oh she was 32 when she went first through IVF and she had never had one [cervical screen] (Grace)
Skye, who had never been screened nor had any real intention to screen, talked about pregnancy being the only reason she would undertake cervical screening.
…if I did need to have one there would only be one reason I would undertake a pap smear test and that was if I was going to try and get pregnant. (Skye)
This study clearly provided the participants with the opportunity to reflect on their own screening knowledge, and how this related to their own screening behaviours and beliefs. As a consequence, all participants agreed that there is a need for more lesbian specific information in the public arena about cervical screening. Amelia conveys:
You see a lot of awareness campaigns for getting Pap smears but I don’t think I have ever seen one directed at lesbians (Amelia)
Participants also made suggestions for greater content regarding lesbians to be included in sex education classes taught in high school. They perceived that this was necessary to ensure a clear message was received about the importance of cervical cancer screening for all women, not just those who were heterosexually inclined.
[At school] you actually get taught sexual health as a straight person [so] when you have finally and are comfortable to come out you think that that sexual education doesn’t necessarily apply to you because of your sexual orientation. So I think it should be actually be spoken about in schools (Kayla)
The women acknowledged that despite health concerns for gay men being widely publicised, health concerns for lesbians were not. Participants discussed the potential for the media to highlight the importance of cervical cancer screening for lesbians.
I think obviously addressing the importance of it in in various publications like Lesbians on the loose (LOTL) and things like that that are out there for you know specifically designed for lesbians and putting it out there and cause a lot of lesbian friendly doctors advertise in that and stuff and nurses and clinics advertise in that so yeah making those people making it known as well that how important it is (Grace)
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
All authors contributed to the conception and design of the paper, CC collected the data, all authors contributed to the data analysis, drafting and critically revising. All authors read and approved the final manuscript.