Human papillomavirus knowledge and experience of getting positive: a qualitative study among women in Kilimanjaro, Tanzania | BMC Women’s Health

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Human papillomavirus knowledge and experience of getting positive: a qualitative study among women in Kilimanjaro, Tanzania | BMC Women’s Health

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A total of 13 women between the ages of 28 and 60 participated in the study. The majority of women have primary education (9/13), married (9/13) with two children (Table 1).

Table 1 Characteristics of study participants with HPV-positive women (N = 13)

A total of four themes were identified; knowledge about HPV and the screening process, responses to receiving positive results, sharing HPV results, and recommendations to improve women’s uptake of cervical cancer screening.

Knowledge of HPV and the screening process

In this study, women were aware of HPV. They mentioned that HPV is a virus that causes cervical cancer and all women have the right to be tested for HPV. “A virus that can cause cervical cancer and can also cause other diseases” ID 1. They also mentioned that HPV is sexually transmitted and is a risk if a woman has sex with different men. “This virus enters the body through sex with more than two, three men” ID 13.

The women mentioned that screening helps detect if a woman has early signs of cervical cancer, which in turn helps with early treatment.

“They test the uterus, the cervix, to see if there’s a problem, and if there’s any early problem, they tell you and see how they can help early on.” ID 12. Although the majority of women were aware of HPV, only three women were aware of the benefits of cervical cancer screening. Most women mentioned that the HPV screening process was friendly and women were able to demonstrate the process. “They tested the cervix, took the mucus and said it will be tested and they will give you the results later” ID 6.

Although women mentioned that they received better services in the screening process, two women had concerns that there should be more privacy. Some women were scared and embarrassed when asked that there would be an investigation of their private parts and did not feel comfortable having a male doctor.

Despite the knowledge about HPV, the concept of persistence of the HPV virus was confusing. The women admit that health care providers have informed them that the virus may persist or disappear at times, but this creates tension, as explained in the narrative below.

“It’s scary not knowing if I’m in the group where HPV can persist and I’ll end up with cancer or not. I can tell you that it is very stressful, no matter how much they advise and comfort you” ID 2.

Women’s reactions to receiving HPV positive results

Duration and process of giving result

The majority of women expressed that the process of getting the result was not good. They mentioned that they were informed by the health facility that those who test positive will be called to come to the health facility in two weeks. The majority of women worry and keep thinking about what their results will be, and for those who have forgotten the process, it was a shock to receive a call from the facility.

“They called when I went, when they explained that the test was positive, I said positive does it mean I have cancer? They said it’s not cancer, but you have pathogens that can cause cancer. I asked them what should I do, are you giving me medicine or removing the uterus or what are you doing with me? I was told no, your immunity will clear this thing up, but you have to come in and get checked again in a year. So I came back with stress” IDI 3.

“Let’s just say the way I got them honestly, if I had pressure I would have fallen; I thought it was death” ID 4

After reaching the health facility, the women mentioned that the health care providers did not provide much information about the results, which left many questions unanswered, as explained in the narratives below.

“My doctor had to explain to me in more detail to understand because I was left with a lot of questions that I didn’t have answers to” IDI 1. Participant continues “what am I going to do with this virus, is there no cure and when you are like this how long you will live then you will die, are there other effects, things like that. I know the results are there and he couldn’t change them” IDI 1.

Getting positive results

Women had different reactions after knowing they had a positive HPV result. Some thought the results were a death sentence or the end of life. “Personally, it scared me at first because I saw that this could be the end of my life, to be honest I was scared, I was very scared” IDI 12. Others thought the results meant they had cancer, as several participants recounted “At first when I was told, of course I lost hope. Because I thought I already had cancer” ID 8. “They called when I went, when they explained that the test was positive, I said positive does it mean I have cancer? IDI 3. “Honestly, the day was not entirely good because first of all I never knew there was such a disease, I just know that cancer, when they gave me these results I was honestly shocked, I knew that death was inevitable” IDI 16. Some women advised against their plans to have children, thinking that this could lead to disease progression, as told here “I wanted to get pregnant later, but with positive results I no longer want children, I canceled those plans” ID 2.

“You know I’m a year old and if it’s a year I’d already have a baby but these are the problems that made me wait and you know…” IDI 3

But once they received counselling, it helped them to calm down and focus on the advice given at the health facility.

“I got them with a little worry, but after the educator explained it to me, I realized that this is a normal thing and there is no problem in my body” IDI I0.

In some situations, women feel guilty for having sex, when i remember i feel so bad as you know from people’s stories they say this thing comes from men so i thought if i didn’t have sex that means i wouldn’t have this thing and after the results I didn’t have much interest in sex” IDI 2.

The fear of getting positive HPV results caused another woman to go for a second test, still worried about the results. “Yes, to be honest, it made me think so much that I took another test there and I’m afraid to ask for the results because if they tell me again that they are positive, it means that the immunity is not working and how will i understand if i continue for a year will it have worked? So, to be honest, it’s stressful” IDI i3.

However, few women had a positive opinion of the positive results. Women mentioned that positive HPV results gave them hope and a future plan for cervical cancer screening. “Honestly I was very happy to have my health checked, so happy to know I had a problem that when I got sick one day I wouldn’t know when the problem started” ID 6.

Sharing HPV results

A person to share the results with

The majority of women were able to share their HPV results with their closest family members, especially their partners, mothers and sisters. Women confided in their mothers as the first to share their results, then their husbands or partners.

“Yes, the first person who revealed my HPV test results was my mother. She had already received this education… she was aware, she just said no problem and advised me to tell my partner because he is the closest person to me. So, from then on I decided to reveal it to my husband” IDI 8.

Another woman was also positive to share the results as told here “yes, I saw the need to share with someone. First I shared with my husband and explained it well and he understood that I don’t have cancer, I just have the virus, so he told me don’t worry, you have nothing. Later I shared with another relative of mine who is my sister and she told me that you shouldn’t worry because this thing is gone and it’s just things that are in the body and will end in time IDI 12.

Fear of revealing the results

In this study, three mothers did not want to share their HPV results with anyone. The women feared that sharing the results with others could lead to them being labeled as cancer patients. They also feared that HPV was an STI; they could be seen as prostitutes by their partners, so they feel there is no need to cause problems in the marriage. They also mentioned that the results are private and should not be shared with any other person. If there is a problem, they will find a way to deal with it.

“I thought if I told him he was going to get stressed, he was going to get a lot of stress… I decided to keep it to myself and deal with it my way/ die with it” IDI 3

Another participant mentioned that he did not share the results, but if he had to share, he would share with his relative “maybe if it happens one day, I’ll decide to explain it to my relative or,,,, mostly my relative,” she goes on to explain that the results caused concern and she puts everything in God’s hands “I was worried, but I left it to God and said that if I have to die, I will die normally like any other human being and a human being has to die , but if this problem is detected early and is treatable, I will be helped” ID 4.

Concerns from the closest family members

Sharing positive HVP results created tension among their family members. Relatives thought the women had cancer, and their husband did not understand the significance of the results. However, the women were urged by their relatives to have regular check-ups at the hospital, and in some situations their partners planned to visit the health facility to get more clarification.

“I shared with my husband, I explained to him and he was shocked, but I calmed him down by saying it’s not cancer, it’s something that can stay in the body for a few years and go away on its own or cause cancer , so what he advised me to continue with the follow up and not neglect and create a problem” IDI 13.

This study mentions that a woman received encouragement from her husband and mother after she tested positive for HPV.

“Yes, I saw that I needed to share with someone, first I shared with my husband and explained it well and he understood that I don’t have cancer, I just have the virus, so he told me not to worry.” I later shared with my sister” ID 12

Recommendations for improving the uptake of cervical cancer screening in women

The women suggested various ways that could be used to improve the whole process from screening to results and increase the uptake of HPV screening in society as a whole. The women suggested that when they give the results, they should at least be called on the phone so that they can visit the clinic and be given the results face-to-face. They also assume that face-to-face will help them have a discussion with the doctor and be able to ask questions that are on their mind. It was expressed that it was important that the same doctor who performed the examination gave the results in order to avoid the inconvenience of causing women to be shocked.

“To another person I would like, after you get the test, they call you and give you the results when you’re face to face with your doctor. They should try to use words that will make a person come without fear and the doctor who did the test should explain your results to you face to face” IDI 1.

The women also mentioned that it is important to provide services to the community, such as a home visit, to make the women feel and make the services close to the community, as each ward has a health center.

“I would advise health service providers to visit communities on the streets because there are people who are too lazy to go to the hospital, claiming that it takes a long time to wait for the service. So I advise them to organize even home visits, it will be nice as everyone will be able to reach their workshop. Another option is to bring this service closer to the community by providing these services to the facilities in each ward as each ward has a health facility that would also be easy. ID 7.

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