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 , 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.