knowledge of cervical cancer in Papua New Guinea

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Ethnicity & Health

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Ambiguous bodies, uncertain diseases: knowledge of cervical cancer in Papua New Guinea A. Kelly-Hanku, S. Ase, V. Fiya, P. Toliman, H. Aeno, G. M. Mola, J. M. Kaldor, L. M. Vallely & A. J. Vallely To cite this article: A. Kelly-Hanku, S. Ase, V. Fiya, P. Toliman, H. Aeno, G. M. Mola, J. M. Kaldor, L. M. Vallely & A. J. Vallely (2017): Ambiguous bodies, uncertain diseases: knowledge of cervical cancer in Papua New Guinea, Ethnicity & Health, DOI: 10.1080/13557858.2017.1283393 To link to this article: http://dx.doi.org/10.1080/13557858.2017.1283393

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Date: 12 February 2017, At: 22:51

ETHNICITY & HEALTH, 2017 http://dx.doi.org/10.1080/13557858.2017.1283393

Ambiguous bodies, uncertain diseases: knowledge of cervical cancer in Papua New Guinea A. Kelly-Hankua,b, S. Asea, V. Fiyaa, P. Tolimana, H. Aenoa, G. M. Molac, J. M. Kaldorb, L. M. Vallelyb and A. J. Vallelya,b a

Sexual and Reproductive Health, Papua New Guinea Institute of Medical Research, Goroka, Papua New Guinea; bKirby, UNSW, Sydney, Australia; cSchool of Medical Sciences, University of Papua New Guinea, Goroka, Papua New Guinea ABSTRACT

ARTICLE HISTORY

Objectives: Within their local realities, people experience and interpret disease in diverse ways that do not necessarily correlate or converge with Western biomedical interventions. In the high cervical cancer burden setting of Papua New Guinea, understanding how people experience and interpret cervical cancer is necessary for effective intervention. Drawing on work by Street on the production of unstable biomedical knowledge, we explored how ambiguity and uncertainty, coupled with cultural taboos and linguistic limitations, affect what and how people ‘know’ about women’s reproductive organs and their associated disease. Design: A qualitative research approach was used to explore and understand how people in PNG articulate matters of health and disease as they relate to cervical cancer and HPV infection. Specifically, how unstable biomedical knowledge is produced and sustained. We employed a mixed-methods approach in collecting data from 208 (147 women) participants between 2011 and 2012 across 3 provinces in PNG. Results: We found that knowledge and awareness about cervical cancer were poor. Five thematic areas emerged in our analysis, which included the gendered knowledge of women’s reproductive health, the burden of cervical cancer in the community and the role (or limitation) of language. We further identified four ways in which ambiguity and uncertainty operate on both sociocultural and biological levels, and in the intersection between to produce unstable biomedical knowledge. These included poor knowledge of where the cervix is located and the uncertainty or unreliability of (lay) diagnoses of disease. Conclusion: Local understandings of cervical cancer reflected the limitations of Tok Pisin as a lingua franca as well as the wider uncertain biomedical environment where diagnoses are assembled and shared. There is a clear need to improve understanding of the female reproductive organs in order that people, women in particular, can be better informed about cervical cancer and ultimately better receptive to intervention strategies.

Received 9 February 2016 Accepted 12 December 2016 KEYWORDS

Cervical cancer; Papua New Guinea; knowledge; Human Papilloma Virus; uncertainty

CONTACT A. Kelly-Hanku [email protected] Head, Sexual and Reproductive Health, Papua New Guinea Institute of Medical Research, P.O. Box 60, Goroka EHP 441, Papua New Guinea © 2017 Informa UK Limited, trading as Taylor & Francis Group

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Introduction Papua New Guinea (PNG) has among the highest estimated burdens of cervical cancer globally, with incidence 6.3 times that of Australia and New Zealand (age standardised rates 34.5 vs. 5.5/100,000), and mortality 13.5 times greater (21.7 vs. 1.6/100,000) (Torre et al. 2015; WHO/ IARC 2015). As the most common form of cancer affecting women in PNG, cervical cancer results in an estimated 1500 deaths per year (Vallely, Mola, and Kaldor 2011; Torre et al. 2015). Despite this, the national response to cervical cancer and its causative agent – persistent genital human papillomavirus (HPV) – has been unjustifiably slow. As part of a wider effort to accelerate the national response to cervical cancer and to ensure an evidence-informed response, a number of important epidemiological studies have been undertaken amongst a diverse group of women from across the country. The prevalence of high-risk HPV types that are the causative agents of cervical cancer was high among 1793 women recruited at antenatal, sexual health and well woman clinics in this setting: 3.1%, 41.5% and 22.6%, respectively. Furthermore, HPV subtypes 16 and 18, which collectively cause 70% of the global cervical cancer burden and are vaccine preventable, accounted for 12.5%, 18.9% and 3.7% of HPV subtypes detected (Vallely et al. 2015). This biological variance in disease burden amongst women in PNG bares the complex interaction that the social, cultural and political environments play in health outcomes. Despite the mounting evidence that women in PNG continue to be at risk of developing cervical cancer (as a result of high community prevalence of high-risk HPV subtypes), the national response to cervical cancer in PNG plays out in a challenging health landscape that consists of complex interactions between social, cultural and political forces.

Production of ambiguity and uncertainty in biomedical knowledge On 27 September 2015, the Pacific International Hospital in Port Moresby hosted PNG’s third awareness walk for cancers ‘under the belt’. Drawn from similar awareness campaigns in other contexts, including the United States, the walk in PNG was specifically geared to increase awareness of cervical cancer. Elsewhere, the campaign slogan ‘below the belt’ is used to encompass a wider range of gynaecological cancers, including but not limited to cervical cancer. Regardless, this analogy of ‘below/under the belt’ breeds ambiguity and uncertainty as well as reinforces cultural taboos and linguistic limitations around the naming of women’s reproductive organs and associated disease. This issue of ambiguity is central to understanding community knowledge of cervical cancer. While knowledge of the biomedical aspects of cervical cancer and HPV infection is a necessary component to an evidence-informed response, particularly as it relates to strict and largely Western biomedical prevention, screening and treatment efforts, these factors do not necessarily correlate with the diverse ways in which people (including health professionals) in local realities experience and interpret cervical cancer disease (see, for example, Armstrong and Murphy 2008). Epidemiological indicators fall short of explaining how people contextualise and understand disease aetiology, risk factors for disease and even the extent to which women engage with preventative and treatment services (see, for example, Mosavel and El-Shaarawi 2007; Brown et al. 2010; Cooper Robbins et al. 2010; Kosenko 2012). The work of anthropologists has been particularly important in pursuing the ways in that cultural beliefs, the social environment and political contexts impact

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upon health and disease (see, for example, Lock 2001; Lock and Nguyen 2010; Kelly-Hanku, Aggleton, and Shih 2014). Cultural beliefs and understandings are powerful in understanding and interpreting all forms of diseases (see, for example, Lock and Nguyen 2010; Kelly-Hanku, Aggleton, and Shih 2014) including cervical cancer and HPV (Martinez 2005; Lee et al. 2007; Armstrong and Murphy 2008). So too are the biomedical practices utilised in attempts to ‘render the diseased body visible and knowable to the clinical gaze’ (Street 2011, 13). Consideration therefore must be given to understanding not only people’s biomedical knowledge of cervical cancer (and HPV) but the ways in which people (including health professionals) in diverse local contexts make sense of, understand and make knowable biomedical anomalies (Martinez 2005; Lee et al. 2007; Mosavel and El-Shaarawi 2007; Armstrong and Murphy 2008). And while biomedical knowledge may appear more stable and less ambiguous than other cultural productions of knowledge, there is an important body of work that explores the role and management of uncertainty in clinical practice. Indeed, Rafalovich (2005) argues that the management of uncertainty is pertinent to being an effective clinical practitioner. An important consideration in understanding the sociocultural context of cervical cancer is that one can have persistent HPV infection or indeed disease in the absence of symptoms. That a woman can have a disease or infection without illness can result in a liminal state. Liminality is an anthropological concept that denotes a person as residing between two spaces (be they cultural or even medically defined). As evident in a Venezuelan ethnographic study of women with cervical cancer (Martinez 2005), such women who were without illness, as in the personal experience of disease, are described as negotiating a borderland between health, disease and illness. More recently, this sense of liminality, between illness and heath, was reinforced in a study of uncertainty amongst women with HPV in the USA (Kosenko 2012). In this sense, they are betwixt and between, neither ill nor healthy as one of the woman said; ‘It’s always a risk, you don’t know if that’s going to happen to you or not’ (Kosenko 2012, 538). In turn, without the presentation of symptoms, and the absence of reliable diagnostics, the therapeutic role of biomedicine is also called into question. Moreover, most women who become infected with genital HPV are able to clear the infection without ever becoming aware that they were at one time infected. These matters complicate rather than simplify local understandings of biology. The meanings lay people give to diseases, including their causes, are not always reflective of discourses provided by the medical fraternity (see, for example, Armstrong and Murphy 2008; Kelly-Hanku, Aggleton, and Shih 2014): nor is the aim to assign a definitive disease causation to symptoms the aim of all medical care in all contexts (Street 2011). Indeed, in the context of PNG, where clinical diagnostic facilities are poor, or even worse, not available, also contributes to the production of uncertainty in medical knowledge (Street 2011). In the case of cervical cancer, the meanings inscribed by the lay community are not always aligned with that provided by medical professionals. This is not only true in resource-limited settings but in other countries. This disjuncture can remain true even after lay people are provided with written health information about cervical screening (Armstrong and Murphy 2008). Studies among a diverse range of ethnic populations in both developed and developing country settings have repeatedly shown over many years that biomedical understandings and knowledge of cervical cancer and HPV are low (see, for example, Cooper Robbins et al. 1995; Martinez, Chavez, and Hubbell 1997; Mays et al. 2000; Giles and Garland 2006; Klug, Hukelmann, and Blettner 2008;

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Brown et al. 2010; Joseph et al. 2014; Petrocy and Katz 2014; Reimer et al. 2014) including among women who have been diagnosed with HPV (Daley et al. 2008) and that uncertainty punctuates understandings of a diagnosis (Kosenko 2012). Local biology and cervical cancer in PNG First coined by Gaines to reflect on the various locally situated ways in which biomedical knowledge is interpreted and put into practice/s, the concept of ‘local biologies’ was reinvigorated and modified by Lock to refer to the ways in which ‘the embodied experiences of physical sensations, including those of well-being, health, illness and so on, is in part informed by the material body, itself contingent on evolutionary, environmental and individual variables’. And since embodiment is social, ‘knowledge about biology is informed by the social, and the social is in turn informed by the reality of the material’ (2001, 484). Health and, therefore, disease are simultaneously coproduced through biological, social and cultural processes. Much work has drawn on local biologies to understand health disparities across and between time and place (Lock and Kaufert 2001; Adelson, Butt, and Kielmann 2013; Butt 2013), with some arguing even further for the examination of local microbiologies (Koch 2011). Concerned with local configuration and how people in PNG articulate matters of health and disease as it relates to cervical cancer, and in order to begin developing the foundations for an evidence-informed programming and policy response to cervical cancer, we undertook the country’s first qualitative study in the field. In this paper, we explore women and men’s understandings of cervical cancer, including where the disease presents, and the extent to which women in this context experience this disease. In doing so, we draw on the anthropological work of Street (2011) on the production of uncertainty in medical knowledge as well as Lock (2001) on logical biologies. While important to PNG, this research contributes to a wider body of knowledge. In this article, we focus on the important first stage of building an evidence-informed response to cervical cancer: people’s knowledge of cervical cancer and the perceived burden of the disease in the community. In doing so, we apply the framework of ‘local biologies’ to explore the production of unstable biomedical knowledge of cervical cancer in PNG. In a forthcoming paper, we explore community understandings of the cause of cervical cancer as well as community acceptability of proven biomedical interventions to prevent the disease, namely the HPV vaccine for pre-sexual female and male youth in PNG.

Methodology Study sites Between 2011 and 2012, we conducted a qualitative research study using semi-structured interviews and focus group discussions with women and men in three provinces in PNG: Eastern Highlands Province (EHP); Western Highlands Province (WHP); and Milne Bay Province (MBP). These provinces were chosen because of the strong relationship that the PNG Institute of Medical Research (PNGIMR) has established with these communities, health authorities, health professionals and other stakeholders as a result of long-term collaborative research projects in these locations. Sites in EHP and WHP also took part in related research, including HPV and other sexually transmitted infection (STI) prevalence

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surveys, and a project to evaluate visual inspection of the cervix after application with acetic acid (VIA) for cervical screening in PNG. The selection of these provinces also reflected both patriarchal (EHP and WHP) and matrilineal (MBP) societies and are ethnically distinct. As a disease affecting women, and a by-product of a vaccine aimed almost exclusively at girls, most studies on understandings about cervical cancer and its cause only include women; very few have included the perspective of men and even fewer focused exclusively on them (McPartland et al. 2005; Pitts et al. 2009). We purposely designed this study to ensure representation (but not domination) of men. We did this for a number of reasons. Papua New Guinean societies are predominantly, but by no means exclusively, patriarchal. As such, men play a particularly influential and important role in decision-making processes. And, in countries such as PNG, unless men are included from the outset of studies such as this which are designed to inform interventions in the form of vaccination programmes, the blame for disease and responsibility for prevention are likely to rest solely with only one half of the population (namely women). In this way, normative efforts to govern women’s bodies and mediate ‘healthy female citizenship’ (Davies and Burns 2014) should not be the responsibility of adolescent girls and young women alone. As both husbands and fathers, many men in PNG would play an important role in the ability of their wife to undergo screening and for their daughters (and sons) to be vaccinated. Finally, there is increasing acknowledgement (at least in resource-rich context) that pre-sexual boys should be vaccinated in order to reduce the burden of HPV in the community. This will have beneficial effects for girls and women but also boys and men to ensure both are vaccinated against other HPV morbidities such as genital warts and other HPV-related cancers including anal and penile cancer (see, for example, Steben and Garland 2014). Although adolescent boys are unlikely to be vaccinated in the current economic and policy climate in PNG, we nevertheless designed this study to ascertain the acceptability of vaccinating both pre-sexual adolescent girls and boys in order that the evidence be available should there be a programmatic and policy change. This will be explored in a forthcoming paper. In this paper, we set the background for understanding women and men’s knowledge and experiences of cervical cancer. Methods We conducted a total of 59 semi-structured interviews (lasting between 40 minutes and an hour and a half) and 23 focus group discussions (usually around 2 hours long) across the three provinces (see Table 1). These complementary qualitative methods were selected to elicit different types of information and stories. Semi-structured interviews offer an Table 1. Number and type of interviews/focus group discussions conducted by province. EHP

Men Women Total

Semistructured interviews 7 10 17

WHP Focus group discussion

Semistructured interviews

4 5 9

6 14 20

MBP Focus group discussion

Semistructured interviews

Focus group discussion

Total

3 7 10

10 17 27

0 4 4

30 57 82

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important means to collect personal stories and experiences while focus groups allow for broader community perceptions and experiences. While there are some critiques and cautions of combing qualitative methods, we did so with an acute awareness of the different assumptions and frameworks that we bring to our methods and analysis, as suggested by Barbour (1998). Interview guides were designed to obtain demographic information; knowledge of women’s health issues in the community; knowledge of cancers affecting women; cultural aetiology of cervical cancer including its cause and where in the body it occurs; knowledge and understanding of screening, treatment and prevention of cervical cancer and knowledge and acceptability of the HPV vaccine. See Appendix 1 for sample of an interview guide. Within focus group discussions, all of which were gendered, we utilised ‘body mapping’ as a participatory research method. The use of body mapping in these groups was used for two purposes; first was as an icebreaker, and second, to get people talking about women’s health and identifying where on women’s bodies specific disease manifested. The study team developed a detailed guide for body mapping, some of which are included in Box 1. Participants were primarily recruited through community leaders in the study sites with fewer recruited through healthcare workers at health centres in the area. In each of the communities, Tok save’s (public notices) were given verbally to invite people to participate. In order to recruit ‘couples’ into gender-specific focus groups, teachers and their spouses were recruited in one of the peri-urban areas. In other areas, this was not successful. As a geographically diverse country with rugged terrain, we attempted to capture as much diversity in participant types and their understanding within the provinces by interviewing those in rural, peri-urban and urban settings, as well as both women and men in each province. Box 1. Sample of instructions given to facilitators for body mapping activity. Body Mapping – Facilitator Guide 1. Ask participants to name all of the different kinds of cancer that they know affect women. List these names all around the body. The words/phrases/names can be in any language including local languages. Continue prompting the participants to name any more types of cancer that they know of or other phrases they have heard to describe cancer. 2. Using the same scribe or another one, ask the group to identify where on the body each type of cancer occurs. Allow for conflict, discussion and heated debate. Do not worry if the map is messy, that is part of the process. Where possible, try to get group consensus but if there is disagreement, ensure that this is noted on the map and in interview notes. 3. Focus in on the type/s of cancer that occur in the female reproductive organs/area. Try to get the group to differentiate where the cancers occur and the different names, if at all possible. Do not force participants if they do not differentiate cancer in the reproductive organs (‘private bits’); that is a finding in itself.

Papua New Guinean researchers trained in qualitative methodologies conducted all interviews and focus group discussions. All interviews and focus group discussion were digitally audio-recorded, transcribed and where necessary translated from Tok Pisin (one of three official languages and a lingua franca of PNG) into English. All interviews in MBP were conducted in English, where Tok Pisin is less widely spoken and English dominates. All other interviews were conducted in Tok Pisin. All identifiable information has been removed and pseudonyms given. Data were analysed using both inductive and deductive approaches. We looked at the data from the generalised perspectives of cervical

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cancer down to the most specific perspectives and vice versa. The research team developed a working codebook by developing codes and sub codes from the interviews collected; these codes were then used in the coding process. Senior staff checked data coding and on the very rare occasion where disagreement was identified, they consulted with others members of the team and a final collective decision was made. All data were analysed using the qualitative data management software package Nvivo9 (QSR Ltd, Australia).

Study sample From the 64 semi-structured interviews and 23 focus group discussions (144 people – 106 were women and the rest men), a total of 208 Papua New Guinean women and men participated in this study. Of these, 71% of them were women (n = 147) (see Table 2). The majority of the participants reflected PNG more generally, with most living in periurban and rural areas with no more than secondary education (60%). Fewer had obtained tertiary or vocational qualifications (13%) or never had attended school (12%). Those who participated and had obtained further education included healthcare workers and teachers. The age of participants ranged from 15 years up to 59 years for women and 80 for men. Many participants were not aware of, or at least did not report, their age (37%) with 28% under the age of 20. Around a third (36%) said that they were single, while more than half of the participants reported that they were married (58%). More participants identified as Seventh Day Adventist and Lutheran than any other religious denomination. Twenty-nine per cent of the participants said that they were Seventh Day Adventist and 17% reported that they were of the Lutheran faith. The ethnic background of the participants for the most part reflected the provinces of recruitment (EHP 31%, MBP 27% and WHP 23%) but also included people from other ethnic and geographical areas across the country including Manus Island, Southern Highlands, Enga, Madang and Morobe Provinces. This reflects the mobility and internal migration of people in PNG.

Ethical considerations Ethics approval was gained from the PNGIMR Institutional Review Board, the PNG Medical Research Advisory Committee (MRAC) and UNSW Australia’s Human Research Ethics Committee. Written information sheets in either English or Tok Pisin were given to all potential study participants. Those who agreed to be involved in the study were required to provide written informed consent. All participants were provided with light refreshments after the interviews. All identifiable information has been removed and pseudonyms have been allocated.

Table 2. Total number of participants. Men Women Total

EHP

WHP

MBP

Total (%)

29 44 73

22 58 80

10 45 55

61 (29) 147 (71) 208 (100)

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Findings A thematic analysis of the narratives of the study participants from across three provinces resulted in a number of key themes as they relate to knowledge and awareness of cervical cancer amongst women and men in PNG. While the results reflect issues to do with Melanesian societies more generally, the themes highlighted and reinforced the importance of gender and gendered knowledge in this Melanesian country. The themes are addressed in order of logic, rather than importance. 1. 2. 3. 4. 5.

Gendered knowledge of women’s health-related issues The role of language in the production of uncertain biomedical knowledge Making cervical cancer visible The burden of cervical cancer in the community Women’s private parts

Throughout each of these themes, issues of ambiguity and uncertainty are repeatedly highlighted. Gendered knowledge of women’s health-related issues In PNG societies, there remain strong cultural beliefs and rhetoric about who can know and therefore speak of gender-specific issues, particularly that of an intimate nature such as health and illness. It was therefore not unexpected that a small but important number of men, who had consented to participate in a study about cervical cancer, reported that, as men, they were not able to discuss such ‘sensitive issues’. For example, Kopul, a university-educated married man who was a secondary school teacher living in WHP and who was of mixed New Guinea Island and Highlands heritage, said: ‘Right across [PNG] we have different cultures, but when discussing about men’s and women’s disease it’s one sensitive issue; like men keep to themselves and women keep to themselves.’ Another of the men described the cultural transgression men (and possibly women) undertake when they discuss gynaecological issues: ‘[In PNG traditional custom] it is not normal for somebody to describe what happens to the vagina like where cervical cancer is situated’. In this way, for some, discussion about gynaecological cancers is taboo. This, however, did not prevent men sharing the knowledge and experiences of gynaecological issues affecting women in their communities, including their mothers. Moreover, the irony of this cultural discourse is that it was the men in the study who were most frequently able to produce some of the most biologically accurate and informed body maps (see Figure 1) of reproductive organs. The role of language in the production of uncertain biomedical knowledge Attempts by the team of PNG researchers, and others on the team who were fluent in Tok Pisin, went to great length to find what we believed was a clear and unambiguous way of identifying the cervix. To date, no one clear description for the cervix or cervical cancer has been formulated and therefore accepted in Tok Pisin. A long but supposedly clear and precise explanation for the cervix was decided upon – maus bilong bilium bilong pikinini (Lit: the mouth of the uterus). This description appeared correct and clear, at least, from the perspective of the researchers. This clarity was called into question during the

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Figure 1. Body map by older women in WHP.

research and particularly the analysis of the data. We believed we had articulated a clear signifier for the cervix, but when translocated into the community, the case was not necessarily consistent across the communities, even within gendered discourses. In this way, language played a critical role in the production of ambiguous bodies and uncertain biomedical knowledge of cervical cancer. Two examples from the body mapping activities illustrate this issue of language, and the production of ambiguity and uncertainty. While the older women in a village in Western Highlands (who had been exposed to health messaging from a heath care worker on cervical cancer) identified the cervix as the maus (see Figure 1), the wives of secondary school teachers in a nearby area referred to the vagina as the maus (see Figure 2). While technically both the cervix and the vagina are each openings or entrances, they each have different biological functions and disease risk and only one can become the site of cervical cancer. The women in Figure 2 located cervical cancer in the approximate anatomical area of the female body. The linguistic implications of Tok Pisin are important if the aim of health messaging is to ensure clear and unambiguous signifiers, and by implication diagnosis across place.

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Figure 2. Body map by middle-aged women in WHP.

Vanessa, a 17-year-old secondary high school boarding student in WHP who originates from the Southern Highlands, said that her aunt had been diagnosed with sik bilong bel (Lit: abdominal sickness/disease) and had died late the previous year from ‘cervical cancer’. Like many others, Vanessa used the terms sik bilong bel and cervical cancer interchangeably. Others readily switched from sik bilong mama to sik bilongh bel and back. This interchange suggests that these different descriptions relate to the same disease. When participants described the ways in which cervical cancer is made visible, the stability of this disease classification (cervical cancer) for the symptoms described is brought to light. Importantly, the highly plausible conflation and confusion between STIs, pelvic inflammatory disease and cervical cancer is consistent within and across the sites. In this way, as we went deeper into the narratives people produced of their knowledge of cervical cancer, the less certain we became of that knowledge (and the knowledge of others who may or may not have co-produced it) (Last 1981). The burden of cervical cancer in the community Sapu, a 25-year-old Eastern Highlander man, said that his mother had been diagnosed with cervical cancer at the provincial hospital in Morobe Province; ‘This name, what do you call, cervical cancer, this was the sickness they said my mother has got.’ This

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remark from Sapu is interesting in a number of ways. He replied to the researcher saying that he knows about cervical cancer and that his mother was diagnosed with it. This awareness is in contrast to what Kopul said about strong gender divisions in highlands communities, where men were not privy to sensitive and indeed personal issues such as gynaecological cancers. Ambiguity is further perpetuated by the absence of reliable and extensive biomedical facilities to accurately bring the disease into clear clinical gaze, and in doing so provide a definitive diagnosis of cervical cancer. This is also complicated by the dearth of local words for reproductive organs. Of the few who spontaneously identified ‘cervical cancer’ as one of the primary health problems facing women (and used this biomedical term in English) had almost exclusively, but not entirely, undergone further tertiary training in health or education. The exceptions to this were the women in focus groups in MBP who could name the disease but knew little more than that. Others who were acquainted with cervical cancer as a certain and knowable biomedical diagnostic fact reported having had a family or community member diagnosed with it. For example, Kabeto, a year-12 graduate and in his late twenties in EHP shared that his mother had died of cervical cancer in 2009. A few other women had themselves undergone screening for the disease at a Well Women’s Clinic offering Pap test cervical screening (Papanicolau test). While the focus of our study was specifically to address cervical cancer, it was important to contextualise this in the context of broader health issues facing women, thereby understanding its significance and meaning in communities. The types of illnesses that were identified as affecting PNG women in our study participant’s communities included vector-borne illnesses (malaria), air-borne infections (tuberculosis), STIs (HIV, AIDS, syphilis and gonorrhoea) and cancers. Other less common illnesses included respiratory infections such as asthma and pneumonia and water-borne diseases such as typhoid. Of those few who spontaneously identified kensa as a health issue affecting PNG women, most identified three. The first two were breast cancer (susu kensa; kansa bilong susu) and mouth cancer (maus kensa). The dominance of maus kansa in individual and group discussions was consistent with local cultural contexts where chewing buai (betel nut) is widespread and the long-term consequences (cancer) do not appear gendered (and are reasonably well recognised). The third, and most important category of cancer for this study was the cancer that people described in Tok Pisin that referred to cancer ‘below the belt’ using terms such as kensa bilong billum bilong pikinini (lit: uterine cancer), sik bilong mama (lit: disease of mothers) or bel pen sik (lit: pain in the abdomen). For most participants, ‘they are one disease’ with people referring to them interchangeably as if they are one disease. Participants comfortably went from one description to another, seemingly oblivious to the blurring of different organs, types of cancers or indeed different disease categories (see also the role of language). It could be thought that due to the limited spontaneous discussion of cervical cancer that awareness of this disease was not paramount in the communities we visited. This could not be farther from the truth; at least to the extent that what they saw and were describing as sik bilong mama was cervical cancer. A women’s focus group in EHP described a situation where sik bilong mama was commonplace: ‘many of us here have this illness’; ‘I always see lots of mothers with this.’ In MBP, cervical cancer was the first illness affecting women that was described in one focus group and in doing so, it was posited as the largest cause of death amongst

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women in their communities: ‘To this time I think that most Milne Bay women are dying of this sickness, cervical cancer in their womb.’ Note, the ambiguity here; cervical cancer is a clear and precise biomedical disease category but the location of the disease brings this certainty into question. But cervical cancer was not always so common, suggested Jonathan, a 30-year-old final year university student in EHP, who claimed that in the last decade, cervical cancer had become a leading cause of morbidity for women: Like when I was a small boy I never saw a lot of the sicknesses that I see now; I see with mothers. Before, like its normal to have malaria and headaches or illnesses like that, but now lately, like maybe 10 years or so until today we are living with this problem where they say, ‘abdominal pain’ (bel pen) for mothers. We do hear them saying ‘abdominal pain’ only. From the village level to the street level where we are living, they say that and go to the hospital. But lately in this short time I have seen that increasingly the mothers have been going to the hospital and saying we have this sickness.

Reinforcing this high burden of biomedical uncertainty around the disease category of cervical cancer, Romeo (in the same focus group as Jonathan above), an unemployed married man of mixed Morobe and WHP parentage, and father of two, who only completed Grade 6, said that in his community, lots of mothers were dying from this abdominal pain caused by cancer. This cancer he said is inside the reproductive organs. Bronwyn, an 18-year-old Year-12 student in Western Highlands said that cervical cancer was a new cancer and that people in the village are not educated and therefore cannot read the papers to learn about it. As a result, ‘when mothers develop this disease they just think it’s a disease of the womb and they don’t know it’s cervical cancer’. Moreover, Kabeto, a 24-year-old Eastern Highlander man, said: Ah it’s normal, everywhere when women get this sickness right on the spot they will say, she has acquired ‘sikbilong mama’ so that is I think every men knows it, if women acquire that problem, they say she has got ‘sik bilong mama’.

Again, this statement contests the assertion by Kopul when he said men do not discuss matters pertaining to women, at least not so among young men like Kabeto, suggesting a possible generational change. The suggestion that there is likely to be a generational difference in knowledge and in talking about these sensitive issues pertaining to women was highlighted by Casper, a young male student from MBP who said: ‘Yes I have a little idea about that, the cervix is located in the woman’s private organ (vagina), I learnt about it from my personal development class in school.’ But to what extent do others know where the cervix is located? Women’s private parts The production of uncertainty related to the terms used to define the illness but also extended further to the site of the disease. Sapu, a 25-year-old Eastern Highlander man, understood that his mother had been diagnosed with cervical cancer: ‘This name, what do you call, cervical cancer, this was the sickness they said my mother has got. This disease is affecting my mother, inside her womb, where the baby is formed. It starts at the vagina.’ Although Sapu said his mother has been diagnosed with cervical cancer, he located the source of her cancer elsewhere – the womb. He then added further information that suggested the cancer may in fact occur further down closer to the cervix by his reference to the cancer starts further down in the vagina – the base of the womb. This vague

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and somewhat confusing description by Sapu is important in understanding how others made sense of the condition, but, more importantly, made sense of its effects on the material body. Although not all participants knew of cervical cancer, most knew of a disease called sik bilong mama and its iterations. Those who could accurately describe and locate the cervix as the loci for cervical cancer were similar to those who had described the condition in English, but particularly so for those whose families had been affected by the disease, along with healthcare workers. As a 23-year-old male nurse in WHP, Andrew provided an accurate description saying, ‘cervical cancer occurs at the door to the uterus’. As a man, Andrew was an exception to most of the males in the study, particularly younger ones, who could not provide such an account. A young female student studying at a nursing college in MBP, Gail said: ‘It affects the cervix, the neck of the womb and spreads if the woman is not treated earlier.’ Another woman from MBP, Aupeya aged 33 years and who described herself as having this disease because she experienced pain when having sex with her husband, said that cervical cancer occurs ‘at the entrance of the uterus’, the location of her pain during sex. While being fun and interactive, with one man saying he would post a picture of his body being traced on Facebook™, the body mapping exercise in focus group discussions proved insightful into the limits of most people’s reproductive health knowledge. In contrast to the very few participants who freely identified cervical cancer as a health issue facing Papua New Guinean women, more were able to locate, however imperfectly, where this cancer (sik bilong mama) occurs in a woman’s body. The locations all centred on the ‘private parts’, as some referred to the vaginal area with most not accurately locating the cervix. Rosalita, an older female participant from Eastern Highlands, for example, said: ‘It’s in the inside, we are mothers from the village we don’t know where the womb is located, that’s wherever the womb is located, it occurs in there.’ Another older female participant from the same area said: ‘I use to think it develops where the baby forms, in the womb, that’s where it occurs.’ A little more certain, Shirley, a young female participant from EHP, said, ‘I think it [cervical cancer] usually with occurs in the woman’s private part, what should I say? The vagina.’ Nana, a 15-year-old female participant, from WHP offered a similar response saying ‘It’s in the vagina, our cervix is in the vagina.’ An older female participant named Alice had no idea but drew from the thoughts and descriptions of others: ‘I don’t have any idea about this, but just by observing this drawing (body map), I think the cervix must be in between the uterus and the vagina so the cancer must be here.’ Lavinia, a young girl from WHP who had an aunt who died from cervical cancer, sated, ‘I think that this particular cancer usually develops on the cervix, the cervix is close to the vagina, the part leading to the womb.’ Living in WHP, Vanessa said that her aunt had in her disclosure of her illness identified where the cancer and therefore the cervix was: ‘She said I have “cancer of the neck of the womb.”’ Although Casper suggested a generational change with learning about the cervix in his personal development class in high school, boys of a similar age but, who were still in primary school and who had thus not yet undertaken such classes, were not so well placed in identifying cancers affecting women or in identifying parts of women’s reproductive anatomy. This was typified by Raven, a 17-year-old out of school youth who said: ‘I’m not sure’ and Irama, a young male participant from EHP said: ‘I’m not sure what [this] cancer is, I don’t know how it’s caused and which part of the body it occurs.’

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Figure 3. Body map by male schoolteachers in WHP.

Male schoolteachers in WHP drew the most anatomically accurate body map of where the cervix is, and therefore cervical cancer (see Figure 3). This map included details not provided in others, or at least very few, including fallopian tubes, ovaries, the uterus and the cervix. The women in WHP, many who were also teachers or wives of teachers, similarly drew an anatomically accurate body map showing the location of cervical cancer and the cervix as the area at the end of the birth canal (rot bilong pikinini) leading to the uterus (see Figure 4). Another group of men in WHP clearly identified the site of cervical cancer as the vagina (kapis) but interestingly imply that women have two bilums, suggesting the conflation between ovaries and the uterus and that they are totally disconnected from the vagina (see Figure 5) Making cervical cancer visible A secondary school teacher from WHP – McLaren – said that there was little to no awareness of cervical cancer in the community and that people are ‘confused’. Rather than knowing that they have cervical cancer, McLaren said, ‘many women just think it must be some sort of ordinary pain’. Cervical cancer is a ‘private matter’, said another

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Figure 4. Body map by women in WHP.

teacher, a male secondary school principal in MBP; as such, it was not easy to identify a woman with it without her disclosure. It was also not something women readily discussed with men. A similar remark about not being able to render a body visible with a biomedical diagnosis was made by McLaren: ‘For me to recognise a woman with cervical cancer is difficult; it’s almost impossible.’ This may be true for the early stages of the disease but as the symptoms manifest outwardly, McLaren contradicted himself by saying that people in the community begin to talk and gossip identifying ‘She has the disease of mothers’ and then withdraw from the suspected woman. They withdraw, says Iso, from the same focus group, because such a disease is attached with blame. In this way, a woman with cervical cancer is made culturally visible with important implications on her relationships with others as manifested through stigma, blame and withdrawal.1 The symptoms described by participants that identify a woman with cervical cancer were uniform across the three sites: the skin of women with cervical cancer transforms into a very pale and dusty complexion; become weak with abdominal and back pain, have prolonged monthly period, lose weight and produce an unpleasant vaginal smell and pus. For example, Timo, an older male participant from the EHP says ‘they don’t work, they feel weak and their bodies are sort of dusty’. Zenag, a 28-year-old male university graduate from the WHP, said, ‘the signs are abdominal pains, back pains and heavy

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Figure 5. Body map by men in WHP.

bleeding’. Few other participants also came up with other signs and symptoms; Alime, a middle-aged female participant from the EHP, says, ‘it [cervical cancer] grows out the womb like a cauliflower’ (The reference here to cauliflowers may also be alluding to genital warts caused by persistent HPV.) Others included those women who have cervical cancer turn to walk funny, they develop sores in their vaginas and having sex is very painful. Perhaps an important finding to note here is that there is a possibility of confusion between the signs and symptoms of genital STIs and cervical cancer as several responses presented were similar to those of STIs by older female participants from the rural sites in the two highlands provincial sites. For example, Benisha, a 38-year-old female participant from the EHP, says, ‘regarding that, we often think that it is cervical cancer when we see pus and feel pains, we then think that oh we have a sore inside that’s how we know’. Benisha could also be describing pelvic inflammatory disease (a complication of chronic infection with certain STIs such as chlamydia or gonorrhoea), which results in clinical features similar to advanced cervical cancer. These features include abdominal and pelvic discomfort, pain on intercourse and vaginal discharge. The stigma experienced by women considered within the community to have cervical cancer may be the result of their perceived sexually acquired condition, reinforced by the similar clinical features manifest by

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this condition, and compounded in advanced cases by malodourous vaginal discharge and systemic disease (malaise, ‘dusty’ appearance) that may make others fearful that the sufferer has been ‘cursed’ in some way.

Discussion The findings of this study highlight a number of important aspects of the local biology of cervical cancer and the production of ambiguous bodies and uncertain diseases in PNG. There are at least three, possibly more, ways in which ambiguity and uncertainty operated at the social and biological level, and importantly, the intersection between the two. Generally speaking, participants’ understanding of where the cervix is located in the body of women and girls was poor. Even when people spoke of cervical cancer, they would locate the disease in areas other than the cervix, such as the womb or vagina. The implication of this is a need for greater understanding of the female reproductive organs in order that people, women in particular, can be better informed about their bodies. Opportunities to raise awareness of cervical cancer (and subsequently, the HPV vaccine) should be galvanised to increase reproductive health knowledge more generally. Where this should be imparted would vary greatly, depending on the age of the members of community. Long-term benefits would be gained should it be incorporated into health education programmes in school but clearly only relevant to those in school. Uncertainty and ambiguity operated in the local configurations of cervical cancer: the knowledge production of a ‘diagnosis’. With very limited opportunity in PNG to provide a definitive stabilised pathological diagnosis of cervical cancer, healthcare providers are largely reliant on clinical diagnosis. In these diagnoses, health professionals assemble information, results and observations to form ‘diagnositic uncertainty’ (Street 2011). In this way, people may be diseased but are rarely crystallised into a clear, unambiguous and stabilised biomedical object where the elimination of uncertainty is achieved (Street 2011). In this way, uncertainty of biomedical knowledge can be ‘forked’ (Kelly 2007), co-productive of different affects: doubt and hope. Doubt relates to certainty in diagnoses while hope relates to the possibility of a therapeutic approach described as ‘trying out’ (Whyte 1997, 3). Drawing on the work of Mol (2002), future research may seek to understand just how a diagnosis of cervical cancer is assembled in this Melanesian context and shared with women and their families. A related issue to this is that of language. The uncertainty in relation to language operated at several levels: the level of people’s narratives of cervical cancer and that of the clinical diagnosis afforded by the healthcare provider and how it is shared with a woman and her family. The metaphoric nature of Tok Pisin means that terms employed to describe diseases, and where they manifest in the body, are often vague and general in nature – sik bilong bel, sik bilong mama, bel pen sik and so forth. Even for sexually transmitted disease such as gonorrhoea and chlamydia, there are no testing facilities in healthcare centres. Therefore, the only way to differentiate is by clinical presentation. In light of this, generic terms such as sik bilong koap (Lit: sickness from having sex) have come into use to refer to STIs as a whole and to a specific infection as well. While at once at artefact of the metaphoric nature of Tok Pisin, these phrases are an outcome of the lack of clinical certainty (through laboratory diagnosis) around many of the health complaints people present to health facilities with throughout the country.

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The very real challenges with language reflect a limitation of the study, where we were never entirely clear and certain that what was described and narrated as cervical cancer in terms such as bel pen sik and sik bilong mama and so forth, were, from a diagnostic point of view, actually cervical cancer. The fluid nature of language and the terms used, and the possible conflation and confusion regarding different diseases, is at once problematic from a research point of view, where the production of certainty is viewed as a strength of evidence, but reflective of broader issues to do with the uncertain production of biomedical knowledge in PNG (Street 2011). Even as we come to the end of this paper, as authors, we are unable to know for certain if what was described/diagnosed as cervical cancer by people in the communities we visited (and by implication their treating healthcare worker) was indeed cervical cancer, or if it pertained to chronic and untreated STIs, pelvic inflammatory disease or any other infection or disease in the reproductive tract. In this way, our findings are uncertain. Ironically, and to paraphrase Street (2011), the production of uncertainty became stable, almost banal. While the imperfection of language was a real and persistent challenge of the study, future research into the cultural production of knowledge on cervical cancer would be strengthened by examinations that focus on healthcare professionals and how they come to diagnose a woman with cervical cancer and share that information with her and her family. It would also be important to focus more on understanding the knowledge of schoolchildren, particularly pre-sexual children, as it is with them that any programmes designed to prevent cervical cancer through HPV vaccination would be implemented. While surveys to quantify knowledge may provide additional insights, we believe that continued qualitative work in the area would be best placed to answer these questions. Indeed, had we used a standardised survey instrument, we would not have been able to explore or unpack the important issues with language that were possible with a qualitative design. Moreover, the use of body mapping extended and provided an important means of visualising the ambiguity about women’s bodies. Finally, rather than producing a qualitative quagmire (Barbour 1998), the use of complementary qualitative methods offered us important insights into the production of ambiguous bodies and uncertain diseases. By no means does this production of uncertain biomedical knowledge or diagnoses of cervical cancer provide the opportunity for inaction until a stage where knowledge may be stabilised. Nor does it mean that efforts to introduce prevention or testing and treatment measures wait until an arbitrary level of knowledge is reached. What it does mean is that in addition to the human and financial resources that must be expanded to improve the health and well-being of Papua New Guinean women, it will be essential to ensure that health promotion and educational materials are designed to work within and address the production of uncertain biomedical knowledge at all levels from the medical and healthcare fraternity to the women and their families in clinics where they are ‘diagnosed’ and to the communities where they live. The local narratives contained in this paper offer important insights into the complexities of locally contextualised knowledge about cervical cancer and to the growing body of (seemingly more certain and stable) epidemiological data on HPV and cervical cancer in the country.

Note 1. The issue of blame is addressed in more detail in a forthcoming paper on causes of cervical cancer.

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Acknowledgements We are grateful to all the men and women who participated in the study and shared their knowledge and experiences. We would like to thank the reviewers for their engagement with the paper and to Asha Persson for her suggested title of the revised manuscript.

Disclosure statement No potential conflict of interest was reported by the authors.

Funding This work was supported by Australian Agency for International Development.

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Appendix. Interview guide Part A Demographic information 1. Can a. b. c. d. e. f. g.

you tell me about yourself? Age Marital status Number of children Level of education Employment Religion Place of origin

Cultural aetiology – perceptions/beliefs of cervical cancer General cancer questions 1. Tell me about some of the health issues faced by women in your village (other health issues faced by women) 2. Can you tell me what you know about women having cancer? a. Types of cancer b. Where cancer occurs? c. Causes of different types of cancer? d. What happens to the women who have these types of cancer? e. What do women do when they discover that they have cervical cancer? f. How do they treat cancer? (customary, alternative medical, medical, religious (has conversion occur post cancer) g. What do people say/do about it (i.e. react to women with cancer)? Understanding and causes of cervical cancer 3. Have you heard of a cancer called cervical cancer? 4. Can you tell me what you know about this type of cancer? a. Why do some women get it and not others? b. Which kinds of women get it? c. What do you think are your risks of getting cervical cancer? 5. Where in the body does this kind of cancer affect women? 6. What types of phrases / words do you use to talk about this type of cancer? 7. How do other people in your village talk about this type of cancer? 8. How is cervical cancer different from other cancers affecting women? 9. What do people in your community generally say and think about women who have this type of cancer? 10. How are women treated who have this type of cancer? 11. Do you know of anybody in your community/family that has/had it? – Tell me about this person and their experience with cervical cancer?

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PART B Knowledge/understanding of screening, prevention and treatment Treatment/prevention 1. Can you tell me about the ways that cervical cancer can be prevented? 2. Have you ever done anything to prevent yourself from getting cervical cancer? If so, what? 3. Have you heard of any ways that women can check to see if they have cervical cancer? (If so, tell me more?) 4. Can you tell me what you know about how cervical cancer can be treated? a. How did you learn about these methods of treating cervical cancer? b. How do these methods help? /Do all women with cervical cancer use these? c. You know of any women who have undergone any of these types of treatment? General vaccination 1. Have you or your children ever been vaccinated against an illness? a. At what age? b. Who made the decision to vaccinate you or your child/ren?/ c. What are they vaccinated against what? 2. Why were they vaccinated? 3. How do you feel about vaccinations? / How important do you think vaccinations are for the health in PNG? Acceptability of the HPV vaccine 1. Have you heard of HPV? a. If so what do you know about HPV? b. Tell me how HPV can be prevented? 2. Can you tell me if you’ve heard of the HPV vaccine? a. If yes, what do you know about it? b. Who is meant to be vaccinated? c. What is the right age? d. Do you agree with this?

Brief information on HPV vaccine HPV is an STI that causes cervical cancer in women. Cervical cancer is the second most common cancer that kills women in the world. A vaccine is now available to prevent women and girls from getting HPV, the STI that can lead to cervical cancer. In order to be effective, this vaccine must be given to girls and boys before they have sex so that we can be certain they do not already have HPV. If the vaccine is given to boys, then they will not be able to as men infect their wife with HPV which could cause her to have cervical cancer when she is older. In girls, the vaccine will prevent her future husband from infecting her with HPV. At present, this vaccine is not available in PNG. We are trying to find out how people feel about the possibility of the Government of PNG introducing this vaccine for pre-sexual girls and boys and what kind of information needs to be provided to the community about such a vaccine. 1. How would you feel about your daughter/son being vaccinated? (If yes, why?/If no, why?) 2. Who would make the decision in your family for your daughter/Son to be vaccinated? If you/ him, why you/him? 3. How would you talk to your child about the vaccination prior to them getting it? That is, would you tell them that it will stop them from one STI called HPV/Tell them that it stops a woman from getting CC?

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4. Would you allow your children to choose for themselves if they were to be vaccinated? 5. What would you and your family/community will think about young girls/boys in the community being vaccinated? 6. Can you tell me what you think the advantages of the vaccine are for girls? Boys? PNG? 7. Can you tell me what you think the disadvantages of the vaccine are for girls? Boys? PNG? (how acceptable will it be to vaccinate against a pre-sexual child?) 8. How do you see this vaccine as different from other vaccines? 9. If the vaccine were to be provided in PNG, where do you think would be the best location (schools, hospitals, Aid posts) for HPV vaccination? Give details. 10. Would there be other important things you think people would need to think about when doing a vaccination programme like this? (Cost; Sex Education; time of the year) 11. Would you like the Vaccine to be provided in PNG? Why? 12. If the HPV vaccine is available in PNG, what do you think is the best way to educate the general public? Having heard this information on HPV Vaccine and the role of the STI called HPV in causing Cervical Cancer, how have your thoughts about what we just talked about changed?