“This is really something: same place, same day result, same day treatment” Women’s experiences of testing positive for HPV and receiving same-day treatment in Papua New Guinea: an interpretative phenomenological analysis

doi:10.21203/rs.3.rs-1875379/v1

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Research Article

“This is really something: same place, same day result, same day treatment” Women’s experiences of testing positive for HPV and receiving same-day treatment in Papua New Guinea: an interpretative phenomenological analysis

https://doi.org/10.21203/rs.3.rs-1875379/v1

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Journal Publication

published 18 Aug, 2023

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Introduction:

Human papillomavirus (HPV) testing is transforming cervical screening globally. The World Health Organization (WHO) now recommends same-day HPV screen-and-treat for primary cervical screening in low- and middle-income countries (LMIC) but there is a lack of evidence on women’s lived experience of testing positive for oncogenic HPV and receiving same-day treatment. This study aimed to address this knowledge gap among women participating in a same-day HPV screen-and-treat (HPV S&T) program in Papua New Guinea.

Methods

As part of a larger qualitative study, this paper explores the lived experiences of 26 women who tested positive for oncogenic HPV and were treated the same day. We analysed the data using the interpretative phenomenological analysis method. All data were managed using Nvivo 12.5.

Results

The interpretative phenomenological analysis led to three superordinate themes: 1) alleviating initial worries, (2) transforming the disclosure process, and (3) connecting to their faith. Women’s experiences of the same day HPV screen-and-treat were framed by initial emotional reactions to their positive HPV test result, and having access to treatment on the same day, which helped address their worries and fears, and transformed their experience of disclosing their test result and subsequent treatment to family and friends.

Conclusion

This study shows that, while women experience similar initial emotional reactions, undergoing same day treatment quickly resolved the women’s worries, making this program highly acceptable. Overall, women’s engagement in the program confirmed its high acceptability and cultural congruence, leaving women feeling empowered and hopeful about their future, and the future of all Papua New Guinea women.

HPV positive test result

same day screen-and-treat

cervical screening

Papua New Guinea

thermal ablation

Cervical cancer is a leading cancer affecting people with a cervix (“women”) globally, with close to 85% of cases occurring in low- and-middle-income countries [1, 2]. Persistent infection with oncogenic strains of the sexually transmitted infection human papillomavirus (HPV) causes cervical cancer. There are 14 oncogenic HPV types known to cause over 99% of cervical cancer and pre-cancer cases, with HPV 16 and 18 responsible for 70% of all cases [3–5]. HPV-based diagnostic technologies are high-performing and cost-effective molecular platforms that accurately detect oncogenic HPV types [6–8], some of which, such as the GeneXpert platform (Cepheid, Sunnyvale, CA) can be used at point-of-care to provide women with same-day test results [9–11]. In 2021, the World Health Organization (WHO) recommended same-day HPV testing and treatment for primary cervical screening in low- and middle-income countries [8, 12, 13]. Thermal ablation is recommended for same-day treatment of cervical pre-cancer due to its superior clinical efficacy and adverse events profile compared with earlier technologies such as cryotherapy [13, 14]. The advances in cervical screening from the Pap smear test to new molecular point-of-care platforms that can detect HPV and with same day treatment possible with thermal ablation has revolutionised the biomedical landscape of screening (and treatment), most notably for women in low- and middle-income countries.

Reflective of the historical approach to cervical screening much of the social research on diagnosis and illness narratives to date has focused on experiences of receiving abnormal Pap smear test or histology results and of receiving a diagnosis such as cervical pre-cancer or cancer [15–17]. With the identification that HPV was the primary cause of cervical cancer the diagnosis of cervical cancer was transformed to a cancer imbued with the stigma of the virus being a sexually transmitted infection (STI). Today, this is even more so as women are tested specifically for HPV in cervical screening programs. The shift in screening practices to be tested for a cancer-causing STI no doubt has significant impacts on the ways in which women now make sense of testing positive, bringing to the forefront other issues when navigating the personal and interpersonal meanings of a positive HPV test result.

While the recent introduction of HPV testing affords a level of certainty that is absent from traditional cervical screening methods (i.e., Pap smears and visual inspection with acetic acid, VIA), that specificity leads to new issues for women who test positive for HPV. And as HPV testing has expanded, so too has the social research which examines the cervical cancer-related illness narratives of women testing positive for HPV. A recent global systematic review and meta-analysis synthesised evidence from Australia, Austria, Brazil, Canada, Greece, Italy, Ireland, Mexico, Norway, Tanzania, Turkey, the UK, and the USA on emotional responses associated with a positive HPV test result [18]. It found that most women experienced varied levels of anxiety, as well as emotions such as hopelessness, sadness, shame, and blame (self and toward partner), to name a few. These emotional responses mainly stemmed from the fear of developing cervical cancer, the stigmatized connection to an STI and its subsequent impact on their social identity [19–24]. Most societies associate the detection of HPV with a lack of hygiene, promiscuity, and immorality [25–29]. This is particularly salient in societies that shame women who engage in premarital sexual activity [30, 31]. Stigma and shame have also impacted other aspects of the women’s screening experience, such as the disclosure process. Women end up dreading the disclosure of a positive test result for fear of being shunned by key members of their social circles [32, 33].

The existing evidence only pertains to women who have undergone screening services in the absence of same day treatment. With the expansion of screening and treatment technologies in cervical screening, we cannot help but wonder how women who test positive for HPV and are subsequently treated on the same day make sense of their diagnosis and their emotional responses to it, and how this affects their sense of self. In this paper we use an interpretative phenomenological analysis to explore the experiences of women testing positive for HPV and undergoing same day treatment in a novel same day screen and treat program conducted in Papua New Guinea (2018–2021). This is certainly the first paper from the Pacific that examines women’s illness narratives as part of a point-of-care self-collect HPV screen-and-treat program, and to our knowledge the first globally, and as such offers an important opportunity to examine how same day treatment moderates women’s illness narratives.

This qualitative study is part of a large-scale field trial conducted in Papua New Guinea which aimed to evaluate the clinical performance, cost-effectiveness, acceptability, and health systems requirements of the self-collect HPV screen-and-treat program to inform future national and global program [5, 10, 11, 34, 55]. We designed a qualitative study exploring women’s, health care workers, and policymakers’ experiences of HPV S&T using self-collection at the two trial sites, Modilon General Hospital in Madang Province, and Mount Hagen General Hospital in Western Highlands Province. Elsewhere, we have examined women’s acceptability of HPV S&T [35], health care workers and key informants’ perspectives of HPV S&T [36], and in this paper we use an interpretative phenomenological analysis to explore the experiences of women who tested positive for HPV and were treated the same day.

Setting

Papua New Guinea is a culturally diverse country in the Pacific with high rates of cervical cancer incidence and mortality [37, 38]. Previous cervical screening programs yielded poor performances and health outcomes, screening less than 5% of age-eligible women nationally [34, 39]. Currently, cervical cancer screening and treatment services are infrequent, ineffective and mostly inaccessible [10, 39].

In 2018, a field trial was initiated to evaluate a same-day point of care HPV self-collect screen-and-treat program (HPV S&T) in Papua New Guinea. In the Papua New Guinea trial, women who were tested positive for HPV underwent same-day visual examination of the cervix to assess eligibility for same-day treatment and if eligible, were offered same-day treatment of the cervical by thermal ablation [6]. A clinical review was scheduled three months after same day treatment to confirm post-treatment resolution. Women who were ineligible for same day treatment (e.g., because a lesion suspicious of cervical cancer was seen on examination) were referred for gynaecology review at their local provincial hospital.

Sampling

Health care workers employed by the Papua New Guinea Institute of Medical Research (PNGIMR) to work at the Well Woman Clinics’ (WWC) and lead the HPV S&T program purposively identified a heterogeneous sample of 62 women who had participated in the program, and who could provide diverse and information-rich data to help address our research questions [40]. To examine the experiences of testing positive for HPV and undergoing same day treatment we draw on data from a sub-sample of 26 women from the overall group of women who self-reported that they had tested positive for HPV. All but one of the 26 shared that they had been provided same day thermal ablation treatment. Upon visual inspection one woman was identified by the treating nurse as being ineligible for thermal ablation and instead was referred for gynaecology review.

Data collection

A semi-structured interview guide was developed and used to interview all women. We used semi-structured interviews due to the sensitive and intimate nature of the questions and to provide a comfortable environment to discuss descriptive details of their experience [40]. As part of the overall interview guide, we had a subset of questions that were specifically designed to be only asked of the women who self-reported being diagnosed with HPV. In these questions we enquired about the meaning of their test result and their experience of treatment, as well as aspects associated with disclosure of their test result.

Information and consent forms explaining the purpose of the study were provided ahead of the interview in a language of their choosing (available in both English and Tok Pisin). All participant details are deidentified and names used in this paper are pseudonyms. The interviews were conducted between May 2018 and August 2019 and took place either on the day of their screen-and-treat procedure or within a few days after, reducing any risk of issues associated with recall. It also meant women’s responses were relatively immediate. We acknowledge that illness narratives can and do change over time [41], but as these women were provided same day treatment it was important that we capture their experience of testing positive and receiving treatment as close to the event as possible. We interviewed women from diverse geographic regions including women were from remote areas who had travelled several days to participate in the program.

Interviews took place in a private office space at the clinic and/or in private spaces outside the clinic (at a hotel/lodge where the participants were residing or the interviewers) to ensure confidentiality and privacy of participants. Interviews were audio-recorded and conducted either in English, Pidgin (Tok Pisin) or a mix of both English and Tok Pisin Interviews averaged 40 minutes but ranged from half an hour to just over an hour. All interviews were audio-recorded and transcribed verbatim and then translated into English as necessary. All interviews transcribed in Pidgin and then translated into English were led by a team of highly experienced staff at the Papua New Guinea Institute of Medical Research.

Data Analysis

The data were analysed using the interpretative phenomenological analysis method which focuses on the lived experience of individuals [42]. The main aim of interpretative phenomenological analysis is to explore how participants make sense of their personal and social world, by focusing on personal experiences and perceptions of a specific phenomenon or event [43]. Interpretative phenomenological analysis uses a dynamic and systematic approach to examine how a particular phenomenon has been understood from the perspective of particular people (emic), in a particular context [44, 45].

The interpretative phenomenological analysis process requires immersion into the data to understand the meaning of the content [43, 44]. Each transcript was analysed separately, and a codebook was developed accordingly by the first author. Patterns across the codes were used to come up with superordinate themes, each comprising of subthemes. All data were managed using Nvivo 12.5 (QSR International, ltd.) [46].

Ethical considerations

The field trial and sub-studies was approved by the Papua New Guinea Institute of Medical Research (PNGIMR) Institutional Review Board (IRB) (approved in November 2017, No. 1712), the Medical Research Advisory Committee (MRAC) of the PNG National Department of Health (NdoH) (approved in September 2017, No. 17.36), and the University of New South Wales (UNSW) Human Research Ethics Committee (approved in September 2017, No. HC17631). All methods were carried out in accordance with relevant guidelines and regulations.

Findings

Participant characteristics

Of the 26 women who reported that they tested positive for HPV, 22 were between 30 and 49 years of age, the average age being 40 years. The majority of the women (n = 19) were in a relationship or married. Most of the women (n = 23) had one or more children, and 15 of the women were formally employed. Half of the women had an education level up to Grade 12. Thirteen of the 26 HPV positive women interviewed in this study were residing in Madang Province, 10 lived in Western Highland Province, two in Southern Highlands Province, and one in Simbu Province. Women who identified as Christian included a range of religious denominations: Lutheran (n = 5), Roman Catholic and members of the Revival Centre (n = 4, each). Reflective of the poor knowledge of HPV in Papua New Guinea generally [47], only three women who we interviewed and tested positive for HPV had ever heard of the virus. Ten women had previously had a Pap smear and of these only two had ever received their Pap smear results, more than three months later. Of the 26 women interviewed, none had undergone their three clinical review.

Based on the interpretative phenomenological analysis, three superordinate themes emerged: (1) alleviating initial worries, (2) transforming the disclosure process, and (3) connecting to their faith.

Alleviating initial worries

Women’s experiences of receiving a positive test result were initially received with mixed feelings. Prior to undertaking HPV testing, all women received a (10–15 minutes) health education session with information about the virus and its causative association to cervical cancer. In the absence of a national or provincial HPV messaging campaigns, having only heard about this virus and its relationship to cervical cancer for the first time in the health education session prior to testing, most of the women spoke of feeling uncertain of what their test result really meant. The obfuscation lied in their lack of biomedical knowledge and their attempt to make sense of the new information in a very short time. This was complicated further by hearing what HPV type they had, leaving women to wonder what the impact of one strain over the other was. As 38-year-old Rina from Madang stated ‘my results… there are two stages, they said… they said I had 16, and 18, I think. So, what is the difference? Are these categories? Category 16 and 18? I do not understand what that is.’ Similarly, Phillipa, a 47-year-old mother of two, was diagnosed with both HPV 18 and HPV 45 and received same day treatment. When discussing her test result, she was similarly confused by the strains: ‘18 and 45? That’s the zone on the cervix, no? I do not know.’

Belina, a 39-year-old mother of three, sought testing due to a family history of cervical cancer. Her familial background had shaped her own biomedical understanding of what causes the disease (i.e., heredity) and led her to believe that she was at high risk for the cancer, yet unclear about how this was manifesting in her body. After being tested and treated in Madang, Belina explained:

I knew all along that it would be positive… it’s something that has been bothering me. I was worried if it’s positive, what will they say, what stage am I in? Am I in the stage of cancer or do I only have the virus but not yet cancer? So, these questions, the thoughts are bothering me… I want to know, what stage I am in now, what is my stage?... but they just said you have the virus. What does it mean?

In the hope of having clarity on her status, Belina mentioned that she would like to see what the actual impact on her body was and enquired about the possibility of having a picture taken of her cervix. She was not sure whether being able to see for herself the impact of the virus on her cervix would alleviate or, instead, heighten her fears of what was biologically happening inside of her. Although she was told by the health care worker that the option of taking a picture of her cervix was not possible, Belina still wondered whether an image would help her answer her lingering question.

In the absence of symptoms, the ambiguous (and invisible) nature of the impact of the virus on their bodies led many women to feel upset and scared about testing positive for HPV. For twelve of the women who had experienced pain or abnormal symptoms prior to being tested, their positive test result was less surprising, but was equally frightening. Women feared for their future and the potential impact it would have on their family and children Bettina, a single mother of five from Mount Hagen had suffered previously from gynaecological issues. She had been having symptoms for a few years and had undergone a Pap test a few years earlier when the program was still in operation but had never received her results. Speaking of her experience with HPV S&T, Bettina elaborated about the time she received her positive HPV test result, emotionally sharing:

I just went in, and they tested me, and it was positive. I thought to myself ‘How long will I be with my family, with my kids?’… I don’t want to leave my children because all along I’ve been supporting them alone, as a mother and father… being both, that’s why the recent test result is something that bothered me… I was scared.

Bettina’s positive test result led to feelings of worry about her life and her children’s future. She recognized the impact her test result has on her own temporality of survival and the possibility that, without treatment, her children could be orphaned.

Yet, when women were reminded that they would be treated on the same day, these initial worries and fears dissipated. Immediate access to precancer treatment, if eligible, alleviated the uncertainty and negative feelings women experienced when initially given their result. Betty, a 40-year-old married mother of five from Mount Hagen, explained how same day treatment transformed her initial feelings of testing positive.

Well, my test result was positive… 18 or 33 or something? I was like ‘oh what’s 18? What’s 33? Is it going to lead to something else?’ I had that scary thought but it’s like they [health care workers] said, ‘It has been treated [with thermal ablation]’, yeah. So, they got it. They have taken care of it [pre-cancerous lesions].

Rejoya, a 31-year-old mother of an 8-year-old girl, had undergone a Pap smear at a private clinic in Madang that previous year. Her sample was sent to Australia for cytology. It took six months for Rejoya to receive her results, at which time she was informed of the presence of abnormal cells on the surface of her cervix. At the clinic she had attended there was no treatment, nor was she recommended any follow up. Referring to her abnormal Pap smear test result, Rejoya was still anxious about having this ‘woman’s disease’, when she learned of HPV S&T after having attended the provincial hospital’s gynaecology clinic. Unlike her previous experience, here at the Well Women’s Clinic she was provided treatment.

At this clinic, the health care worker told me what I was supposed to do, and what the medicine was supposed to do, so they put it in, applied the treatment [thermal ablation]. They told me after six weeks to come back and check for my result. They gave me instructions to follow, I followed every instruction. After six weeks, I came again, they checked me, and I was ok. They said those signs [precancerous lesions] that they saw earlier were not there anymore. Everything went back to normal. I am so happy about that. Like when I came, they were so helpful, the staff. They encouraged me, saying ‘Don’t worry, the treatment that we have applied will make everything alright’. My cervix is back to normal.

Elsa’s experience, a 43-year-old mother of three from Mount Hagen, echoed the sentiment of many of the women:

First, I was scared, you know, but my experience with the treatment was positive. It turned out well. Thank goodness! But this is really something … same place, same day you get all your results… same day and you get your treatment. It’s something that, you know, needs to be everywhere… I think all women deserve a service like that.

Transforming the experience of disclosure

Most women acknowledged that they were initially apprehensive about disclosing their test result to their partners and family members. Much of the apprehension was due to the stigma associated with the STI test result and the associated reactions from family and friends. However, this apprehension dissipated because within a few hours of testing the women had been treated with thermal ablation, made healthy again, by the time they returned home.

Amy, a 34-year-old married mother of one, had heard about HPV S&T on the radio. She had been experiencing pain during intercourse with her husband and thought that she should attend the screen-and-treat program to see if they could help. When she tested positive for HPV and was treated, she contemplated about how best to inform her husband about her screen-and-treat experience:

At first, I didn’t tell my husband that I had been there. I was a little scared. When he came back home [from work], and I told him that I went there, and this was what happened like this, he was very quiet. My husband is always quiet, he just sits down, and he never says anything, he just sits and looks. But this time, he said ‘It’s okay, no problem. Do not worry.’ And then he said ‘Sorry this is happening to you. But now we know what is happening and that’s good’. He was very happy and said ‘When [is] your review date?’ and I told him ‘18th July’. He said, ‘Please keep in touch with the sisters [health care worker],’ and he advised me that he will come with me. I am happy I told my husband. We both are very happy.

Amy’s husband instantly became a significant source of support for her, even offering to accompany her for her review appointment.

Belina experienced a similar level of support from her partner. At the time she was living with her father, a pastor, while her partner of a few years was working elsewhere in Papua New Guinea. Unable to tell her father, Belina first told her partner, who then told her father.

I told him [my partner] right after the test, I cried … I cried and he said ‘Do not worry, you have me now. I’m right behind you, I’ll support you. But do not worry.’ It made me feel good. My partner is the one who told my daddy. He told him everything... My daddy is a man of God. He said, ‘Don’t worry, we’ll pray over it’. Because we are separated [by distance], my partner told my daddy, ‘I will be away so you will be with her always, make her happy, please make her happy. Do not let her be sad please.’

In the case of same day treatment the issue of disclosure is more than a source of support. It also helped women navigate the ‘after-care treatment’ instructions. After thermal ablation, women are instructed to abstain from vaginal intercourse for six weeks to allow the healing process to take place. Women in long-term relationships were initially apprehensive that this requirement might create tension in their relationships. At the time of Kara’s appointment, her husband of several years was working outside of the main city, and she had expressed some relief knowing she would not have to disclose the six-week abstinence requirement. She explained that ‘they [health care workers] told me to abstain from sex for six weeks and I’m glad that my husband is working outside’. When she later decided to disclose her experience to her husband, he was supportive of her experience and needs:

Oh, he was happy that I went for the test and was treated and all that. He said ‘well you got your treatment and, then you will go back for your review again in August’… yeah. I have to go back for another review. But he was happy that I went for the test and was treated.

Most women also saw disclosure as an opportunity to advocate for the screen-and-treat service. They felt compelled to inform the women in their lives (i.e., mothers, sisters, and close friends) to ensure they get promptly tested. Rima, a 40-year-old married mother of three from Madang explained:

After having gone through this, I called all my sisters and told them that they should go and get checked. I said, ‘You all should go and do this check-up’. We kind of joked around at first but then I seriously urged that they should. I have gone there already, and I want you all my sisters to go too. I told them to go make an appointment and then go on the date given and wait to be seen because it is for your own good. So, I told my sisters, my family members and even those women from the street, quite a number of women.

Liana from Madang had a similar purpose for disclosing her test result to close family and friends, noting that:

All my family members know about it [my test result] right now. I’m not in the village but when I get there, I would actually explain to those mothers, trying to tell people. Not trying but I will tell those people in the village. Educate them on what is happening to women out there, and I will tell them or advise them to come for that medical check.

Of the women who tested positive for HPV all but one, Nayla, a 34-year-old married mother of two, was provided with same day treatment. Upon visual inspection she was informed that she was not eligible for thermal ablation and instead was given a referral to the Gynaecologist for biopsy for further examination. Clearly distraught of learning that she was positive for HPV and needing a specialist referral Nyla cried with her husband when he came to pick her up from the clinic.

I was in tears telling him about my result, he was there to comfort me, encourage me so he told me ‘It's not confirmed that you have cancer, it’s a virus, there’s always hope’. I felt better. And when I spoke to Tambu [mother-in-law], she told me not to worry, she said I've been there for a check-up and … so she was encouraging. It helped me.

Connecting to their faith

Religiosity played an important role in women’s experience of testing positive for HPV and receiving treatment on the same day. For them, access to treatment was considered a divine intervention. Elsa, a 43-year-old mother of two from Madang, reflected after her treatment, that ‘I believe in God, so I felt blessed that I was healed by God, and I was guided by the Lord all through my operation [procedure], before and after, meaning I didn't feel any pain.’ Just like Elsa, Amy, a 34-year-old mother of one, was convinced that prayer is what helped her. She explained that when she was diagnosed with HPV, ‘I prayed to God ‘please just remove all this and just give me mercy and peace’. And I received this treatment. It was God.’

Kiana, a 34-year-old mother of four from Mount Hagen, described how God healed the women:

God is the only one that holds our lives. God brings the doctors and the medicine. Whether this cervical cancer develops from food, from our own mistakes as women like not being faithful to our husbands, or the husbands not being faithful to us, the thing is, we must be with God, that is the important thing. God holds our lives. And now I’m fine.

Kiana’s statement reveals that she believes in God being the source for all events happening, whether good or bad. To her, God is the source and the answer.

Having a strong sense of religious faith helped the women remain positive about their overall experience and their future.

Women’s narratives were framed by their initial reactions to their HPV test result, followed by the immediate relief of having access to same day treatment Following testing, health care workers would counsel the women and disclose their results in a private space at the clinic. Most of the women worried about their lives, the potential for being diagnosed with cervical cancer, and the subsequent impact on their families, especially their children. Yet, having immediate access to same day thermal ablation led to women reaching quicker resolution of the initial response to testing positive for HPV, leading to an almost immediate feeling a sense of relief. The availability of treatment option on the same day for women who had tested HPV positive helped shape their overall existential and socio-cultural experience of the screen-and-treat program. To date, there are no social research studies focusing on same day HPV screen-and-treat to date. Religiosity also played an important role in the women’s experiences. Women viewed the biomedical technology (i.e., thermal ablation) as a divine intervention, made only possibly by God. Previous research has asserted that religiosity and faith are significant elements of the health care experience in Papua New Guinea [50–52]. This is also inherently linked to the concept of morality, an important aspect of Papua New Guinea’s moral framework in understanding illness and biomedicine [53], which was found to be an important finding in our study.

Previous research focusing on disclosure found similar concerns including fear of being stigmatized by family and friends by having to disclose a positive STI test result [32, 33, 54]. Yet, in this study, access to same day treatment transformed the experience of disclosure. The disclosure process is usually dreaded by women who seek to communicate their test result to loved ones and close friends. This study has shown that access to same day treatment transformed the disclosure experience where the women felt at ease to share their initial test result and their ‘cured’ status to their partners/husbands and family members. The women also felt more comfortable using their experience to advocate for HPV S&T to women in their communities.

Participating in the program renewed women’s desire to maintain a healthy status and remain focused on their healthcare and wellbeing. The benefit of having the same day program helped in keeping their levels of engagement high to take advantage of all that is provided to them.

This is the first study of its kind in Papua New Guinea, and, to our knowledge, globally. This study could serve as a blueprint for similar qualitative studies looking at same day HPV-based screen-and-treat programs in similar settings. Using a qualitative approach, particularly the use of interpretative phenomenological analysis helped emphasize women’s stories which allowed for a deeper inquiry into their experiences. Nevertheless, there are some limitations to the study. Twenty-six is a relatively adequate sample in qualitative research. Yet, interviewing more women who tested positive for HPV and treated on the same day could have helped to substantiate the findings and/or yield additional findings that were not discussed in this paper. In addition, stories and experiences of women who were not eligible for treatment is extremely critical. Amplifying the voices of women ineligible for precancer treatment would highlight the need to make cervical cancer treatment services available and accessible to any women at risk in the country, as well as improve social and health care services for all women in need. The study only interviewed a few of the women who were back at the WWC for their (3-month) clinical review. Additional follow-up is needed with women after clinical review to ensure we add to the evidence base of women’s entire experience post-screen-and-treat.

As the world moves towards the implementation of HPV screen-and-treat, this study hopes to shed light on the meaning and experiences of a positive HPV test result and how women navigate the impact of this test result and subsequent treatment. This study has highlighted key elements of navigating this new clinical algorithm. It found that although women experienced initial uncertainties pertaining to their positive HPV test result, which was associated to the lack of understanding around the test result and its implications, undergoing same day treatment resolved the women’s concerns, making this program highly acceptable and radically changing their illness narrative. Same day HPV screen-and-treat transformed women’s experiences of testing positive and left them feeling hopeful about their future, and the future of all Papua New Guinea women.

HPV: Human Papillomavirus

HPV S&T: single visit HPV-based self-collect, test, and treat screening strategy

IMR: Institute of Medical Research

IRB: Institutional Review Board

MRAC: Medical Research Advisory Committee

NDoH: National Department of Health

NHMRC: National Health and Medical Research Council

PAP: Papanicolaou smear

Papua New Guinea: Papua New Guinea

PNGIMR: Papua New Guinea Institute of Medical Research

STI: Sexually Transmitted Infections

UNSW: University of New South Wales

WHO: World Health Organization

WWC: Well Women’s Clinic

Ethics approval and consent to participate

This study was conducted as part of a National Health and Medical Research Council (NHMRC) funded project grant (GNT1104938) ‘Prospective cohort study to evaluate point-of care HPV-DNA testing for the early detection and treatment of cervical pre-cancer in high-burden, low-resource settings.’ This study was approved by the PNG Institute of Medical Research Institutional Review Board (IRB) (No. 1712), the Medical Research Advisory Committee (MRAC) of the PNG National Department of Health (NDoH) (No. 17.36), and the Human Research Ethics Committee at UNSW Sydney (No. HC17631). All participants signed an informed consent before participating in the interviews.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Funding

Funding was provided by the University of New South Wales scholarship Scientia scheme (to the first author). This study is part of a doctoral research thesis.

Authors' contributions

HC designed, collected, and analysed the data, wrote, and revised the manuscript. HC conducted and transcribed the interviews conducted in English. The Tok Pisin interviews were conducted, translated, and transcribed by SN. SN assisted with participant recruitment. AV, RG and AKH contributed to the design of the manuscript, the analysis, and the writing of the manuscript. All (HC, SN, GM, SGB, JB, JK, GM, AV, RG, AKH) authors read, critically reviewed, and approved the final manuscript.

Availability of Data and Materials

The data used and analyzed for this study were not made publicly available to protect participants’ privacy but are available from the corresponding author on reasonable request.

Acknowledgements

The authors would like to thank all the participants, the PNG IMR team, Modilon Hospital Well Women’s Clinic and Mount Hagen General Hospital Well Women’s Clinic staff members for their instrumental support during the first author’s fieldwork. The authors would also with to acknowledge the senior level staff at both Modilon General Hospital and Mount Hagen General Hospital for their hospitality, time, and support of this study.

Authors’ affiliation:

Kirby Institute for Infection and Immunity in Society, UNSW Sydney, Wallace Wurth Building, UNSW Sydney, NSW 2052, Australia

Hawa Camara, Steven G Badman, Rebecca Guy, Andrew J. Vallely, Angela Kelly-Hanku

Papua New Guinea Institute of Medical Research, Homate Street, PO Box 60, Goroka, Eastern Highlands Province

Somu Nosi, Gloria Munnull

Modilon General Hospital, Department of Obstetrics & Gynaecology, PO Box 1200, Madang, Papua New Guinea

John Bolgna

Mt Hagen Provincial Hospital, PO Box 36, Mt Hagen, WHP 281, Papua New Guinea

Joseph Kuk

School of Medicine and Health Sciences, University of Papua New Guinea, PO Box 5623 Boroko, NCD, Papua New Guinea

Glen Mola

Walboomers, J.M.M., M.V. Jacobs, M.M. Manos, F.X. Bosch, J.A. Kummer, K.V. Shah, P.J.F. Snijders, J. Peto, C.J.L.M. Meijer, and N. Muñoz, Human papillomavirus is a necessary cause of invasive cervical cancer worldwide. The Journal of Pathology, 1999. 189(1): p. 12–19.
Arbyn, M., E. Weiderpass, L. Bruni, S. de Sanjosé, M. Saraiya, J. Ferlay, and F. Bray, Estimates of incidence and mortality of cervical cancer in 2018: a worldwide analysis. The Lancet Global Health, 2020. 8(2): p. e191-e203.
Gravitt, P.E., The known unknowns of HPV natural history. J Clin Invest, 2011. 121(12): p. 4593–9.
Sayed, S., M. Chung and M. Temmerman, Point-of-care HPV molecular diagnostics for a test-and-treat model in high-risk HIV populations. The Lancet Global Health, 2020. 8(2): p. e171-e172.
Toliman, P., S.G. Badman, J. Gabuzzi, S. Silim, L. Forereme, A. Kumbia, B. Kombuk, Z. Kombati, J. Allan, G. Munnull, C. Ryan, L.M. Vallely, A. Kelly-Hanku, H. Wand, G.D.L. Mola, R. Guy, P. Siba, J.M. Kaldor, S.N. Tabrizi, and A.J. Vallely, Field Evaluation of Xpert HPV Point-of-Care Test for Detection of Human Papillomavirus Infection by Use of Self-Collected Vaginal and Clinician-Collected Cervical Specimens. J Clin Microbiol, 2016. 54(7): p. 1734–1737.
World Health Organization, WHO guidelines for screening and treatment of precancerous lesions for cervical cancer prevention. 2013, World Health Organization: Geneva.
WHO, WHO guidelines for the use of thermal ablation for cervical pre-cancer lesions 2019, World Health Organization: Geneva.
World Health Organization, Global strategy to accelerate the elimination of cervical cancer as a public health problem. 2020, World Health Organization: Geneva.
Arbyn, M., S.B. Smith, S. Temin, F. Sultana, P. Castle, S.-S. Collaboration on, and H.P.V. Testing, Detecting cervical precancer and reaching underscreened women by using HPV testing on self samples: updated meta-analyses. BMJ, 2018. 363: p. k4823.
Vallely, A. Point-of-care HPV DNA testing for cervical screening in Papua New Guinea. 2017.
Vallely, A. and P. Toliman, Health service delivery models for scaling use of point-of-care HPV ‘test and treat’ strategies in high-burden, low-income settings. Journal of Virus Eradication, 2019. 5(Supplement 1): p. 1–3.
Woo, Y.L., P. Gravitt, S.K. Khor, C.W. Ng and M. Saville, Accelerating action on cervical screening in lower- and middle-income countries (LMICs) post COVID-19 era. Prev Med, 2021. 144: p. 106294.
World Health Organization, WHO guideline for screening and treatment of cervical pre-cancer lesions for cervical cancer prevention, second edition. 2021, World Health Organization Geneva.
World Health Organization, WHO guidelines for the use of thermal ablation for cervical pre-cancer lesions. 2019, World Health Organization: Geneva. p. 110.
Lauver, D.R., K. Kruse and A. Baggot, Women's uncertainties, coping, and moods regarding abnormal papanicolaou results. J Womens Health Gend Based Med, 1999. 8(8): p. 1103–12.
Rubin, M.M. and C.K. Tripsas, Perceived uncertainty, coping strategies, and adaptation in women with human papillomavirus on pap smear. J Low Genit Tract Dis, 2010. 14(2): p. 81–9.
Cohen, E.L., A.S. Gordon, R. Record, S. Shaunfield, G.M. Jones, and T. Collins, Using communication to manage uncertainty about cervical cancer screening guideline adherence among Appalachian women. J Appl Commun Res, 2016. 44(1): p. 22–39.
McBride, E., O. Tatar, Z. Rosberger, L. Rockliffe, L.A.V. Marlow, R. Moss-Morris, N. Kaur, K. Wade, and J. Waller, Emotional response to testing positive for human papillomavirus at cervical cancer screening: a mixed method systematic review with meta-analysis. Health Psychol Rev, 2020: p. 1–35.
Perrin, K.K., E.M. Daley, S.F. Naoom, J.L. Packing-Ebuen, H.L. Rayko, M. McFarlane, and R.J. McDermott, Women's reactions to HPV diagnosis: insights from in-depth interviews. Women Health, 2006. 43(2): p. 93–110.
Qaderi, K., M. Geranmayeh, F. Farnam, S.S. Hasani and S.T. Mirmolaei, Iranian HPV-positive Women's Needs and Preferences in Relation to Receiving Health Services: A Qualitative Study. 2020.
Qaderi, K., S.T. Mirmolaei, M. Geranmayeh, F. Farnam and S. Sheikh Hasani, 'Does HPV affect my fertility?' Reproductive concerns of HPV-positive women: a qualitative study. Reprod Health, 2021. 18(1): p. 72.
Wong, J.P.H., M. Vahabi, J. Miholjcic, V. Tan, M. Owino, A.T.W. Li, and M.K.L. Poon, Knowledge of HPV/cervical cancer and acceptability of HPV self-sampling among women living with HIV: A scoping review. Curr Oncol, 2018. 25(1): p. e73-e82.
Waller, J., L.A. Marlow and J. Wardle, The association between knowledge of HPV and feelings of stigma, shame and anxiety. Sex Transm Infect, 2007. 83(2): p. 155–9.
Barreto, J.A.P.S., M.N.A.d.S.B. Marinho, E.C.F. Vidal, A.G.A. Pinto, P.D.S. Aquino, and E.C.F. Vidal, Feelings of women with human papilloma virus regarding their infection: An exploratory study. Online Brazilian Journal of Nursing, 2016. 15(3): p. 382.
Monsonego, J., J. Cortes, D.P.d. Silva, A.F. Jorge and P. Klein, Psychological impact, support and information needs for women with an abnormal Pap smear: comparative results of a questionnaire in three European countries. BMC Womens Health, 2011. 11(18).
Rask, M., K. Swahnberg, G. Lindell and M. Oscarsson, Women's experiences of abnormal Pap smear results - A qualitative study. Sex Reprod Healthc, 2017. 12: p. 3–8.
Siu, J.Y., T.K.F. Fung and L.H. Leung, Social and cultural construction processes involved in HPV vaccine hesitancy among Chinese women: a qualitative study. Int J Equity Health, 2019. 18(1): p. 147.
Patel, H., E.L. Moss and S.M. Sherman, HPV primary cervical screening in England: Women's awareness and attitudes. Psychooncology, 2018. 27(6): p. 1559–1564.
Braun, V. and N. Gavey, “Bad girls” and “Good girls”? Sexuality and Cervical Cancer. Women’s Studies International Forum, 1999. 22(2): p. 203–213.
DiStefano, A.S., B. Hui, A. Barrera-Ng, L.F. Quitugua, R. Peters, J. Dimaculangan, I. Vunileva, V. Tui'one, L.M. Takahashi, and S.P. Tanjasiri, Contextualization of HIV and HPV risk and prevention among Pacific Islander young adults in Southern California. Soc Sci Med, 2012. 75(4): p. 699–708.
Sundstrom, B., E. Smith, C. Delay, J.S. Luque, C. Davila, B. Feder, V. Paddock, J. Poudrier, J.Y. Pierce, and H.M. Brandt, A reproductive justice approach to understanding women's experiences with HPV and cervical cancer prevention. Soc Sci Med, 2019. 232: p. 289–297.
McCurdy, S., M.E. Fernández, S. Arvey, D. LaRue, A. Lopez, S.K. Tyson, B. Useche, and M. Sanderson, Hispanic Women's Concerns About Disclosure of Their HPV + Status. Hispanic Health Care International, 2011. 9(4): p. 168–173.
Smith, R.A., R. Hernandez and D. Catona, Investigating Initial Disclosures and Reactions to Unexpected, Positive HPV Diagnosis. West J Commun, 2014. 78(4): p. 426–440.
Toliman, P.J., J.M. Kaldor, S.G. Badman, J. Gabuzzi, S. Silim, A. Kumbia, B. Kombuk, Z. Kombati, G. Munnull, R. Guy, L.M. Vallely, A. Kelly-Hanku, H. Wand, C. Ryan, G. Tan, J. Brotherton, M. Saville, G.D.L. Mola, S.M. Garland, S.N. Tabrizi, and A.J. Vallely, Performance of clinical screening algorithms comprising point-of-care HPV-DNA testing using self-collected vaginal specimens, and visual inspection of the cervix with acetic acid, for the detection of underlying high-grade squamous intraepithelial lesions in Papua New Guinea. Papillomavirus Res, 2018. 6: p. 70–76.
Camara, H., S. Nosi, J. Gabuzzi, G. Munnull, S.G. Badman, J. Bolgna, J. Kuk, G. Mola, R. Guy, A.J. Vallely, and A. Kelly-Hanku, Women’s acceptability of a self-collect HPV same day screen-and-treat program in a high burden setting in the Pacific. Under Review, 2022.
Camara, H., S. Nosi, J. Gabuzzi, G. Munnull, S.G. Badman, J. Bolgna, J. Kuk, G. Mola, R. Guy, A.J. Vallely, and A. Kelly-Hanku, Acceptability and sustainability of a point-of-care HPV ‘self-collect, screen-and-treat’ for cervical cancer prevention in Papua New Guinea: A qualitative exploration of key stakeholders’ perspectives Under review, 2022.
Bruni, L., G. Albero, B. Serrano, M. Mena, D. Gómez, J. Muñoz, F. Bosch, and S.d. Sanjosé, Human Papillomavirus and Related Diseases in Papua New Guinea, I.I.I.C.o.H.a.C.H.I. Centre), Editor. 2019, ICO/IARC Information Centre on HPV and Cancer (HPV Information Centre).
International Agency for Research on Cancer (IARC), The Global Cancer Observatory (Globocan): Papua New Guinea. 2020, World Health Organization: Geneva, Switzerland.
Vallely, A., G.D.L. Mola and J.M. Kaldor, Achieving control of cervical cancer in Papua New Guinea: what are the research and program priorities? PNG Med J, 2011. 54(3–4): p. 83–90.
Braun, V. and V. Clarke, Successful Qualitative Research: a practical guide for beginners, ed. M. Carmichael. 2013, London, UK: SAGE Publications Ltd. 382.
Pop, C.A., Cervical cancer narratives: invoking 'God's will' to re-appropriate reproductive rights in present-day Romania. Cult Health Sex, 2015. 17(1): p. 48–62.
Smith, J.A., M. Jarman and M. Osborn, Doing Interpretative Phenomenological Analysis, in Qualitative Health Psychology, M. Murray and K. Chamberlain, Editors. 1999, Sage.
Smith, J.A. and M. Osborn, Interpretative Phenomenological Analysis, in Qualitative Psychology: A Practical Guide to Research Methods, J.A. Smith, Editor. 2015, SAGE: Birkbeck College, UK.
Smith, J.A., P. Flowers and M. Larkin, Interpretative phenomenological analysis: Theory, method, and research, ed. Sage. 2009, London, England.
Smith, J.A. and M. Osborn, Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain. Br J Pain, 2015. 9(1): p. 41–2.
QSR, NVivo qualitative data analysis software, Q.I.P. Ltd., Editor. 2018.
Kelly-Hanku, A., S. Ase, V. Fiya, P. Toliman, H. Aeno, G.M. Mola, J.M. Kaldor, L.M. Vallely, and A.J. Vallely, Ambiguous bodies, uncertain diseases: knowledge of cervical cancer in Papua New Guinea. Ethn Health, 2018. 23(6): p. 659–681.
Lee, F., A. Bula, J. Chapola, C. Mapanje, B. Phiri, N. Kamtuwange, M. Tsidya, J. Tang, and L. Chinula, Women's experiences in a community-based screen-and-treat cervical cancer prevention program in rural Malawi: a qualitative study. BMC Cancer, 2021. 21(1): p. 428.
Munthali, A.C., B.M. Ngwira and F. Taulo, Exploring barriers to the delivery of cervical cancer screening and early treatment services in Malawi: some views from service providers. Patient Prefer Adherence, 2015. 9: p. 501–8.
Eves, R. and A. Kelly-Hanku, Medical pluralism, Pentecostal healing and contests over healing power in Papua New Guinea. Soc Sci Med, 2020. 266: p. 113381.
Kelly-Hanku, A., P. Aggleton and P. Shih, I shouldn't talk of medicine only: Biomedical and religious frameworks for understanding antiretroviral therapies, their invention and their effects. Glob Public Health, 2018. 13(10): p. 1454–1467.
Persson, A., A. Kelly-Hanku, S. Bell, A. Mek, H. Worth, and R. Nake Trumb, "Vibrant Entanglements": HIV Biomedicine and Serodiscordant Couples in Papua New Guinea. Med Anthropol, 2019. 38(3): p. 267–281.
Kelly-Hanku, A., P. Aggleton and P. Shih, ‘We call it a virus but I want to say it's the devil inside’: Redemption, moral reform and relationships with God among people living with HIV in Papua New Guinea. Social Science & Medicine, 2014. 119: p. 106–113.
Concerns about disclosing a high-risk cervical human papillomavirus (HPV) infection to a sexual partner: a systematic review and thematic synthesis. BMJ Sexual & Reproductive Health, 2021. 47(1): p. 17–26.
Vallely AJ, Saville M, Badman SG, Gabuzzi J, Bolnga J, Mola GDL, Kuk J, Wai M, Munnull G, Garland SM, Brotherton JML, Kelly-Hanku A, Morgan C, Toliman PJ, Kombati Z, Kariwiga G, Babona D, Tan G, Simms KT, Cornall AM, Tabrizi SN, Wand H, Guy R, Canfell K., and J.M. Kaldor, Point-of-care HPV-DNA testing of self-collected specimens and same-day thermal ablation for the early detection and treatment of cervical pre-cancer in high-burden, low-resource settings: Results of a prospective intervention trial in Papua New Guinea (HPV-STAT). Under review.

No competing interests reported.

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“This is really something: same place, same day result, same day treatment” Women’s experiences of testing positive for HPV and receiving same-day treatment in Papua New Guinea: an interpretative phenomenological analysis

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Conclusion

Introduction

Methods

Setting

Sampling

Data collection

Data Analysis

Ethical considerations

Findings

Participant characteristics

Alleviating initial worries

Transforming the experience of disclosure

Connecting to their faith

Discussion

Strengths And Limitations

Conclusion

Acronyms

Declarations

References

Additional Declarations

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