Description of the sample
The survey was conducted with 100 HPV positive women, 61 treated and 39 LTFU. From this group, 10 treated women and 10 LTFU women participated in IDIs. We were unable to reach our target of 50 treated and 50 LTFU surveyed women, primarily due to the inherent challenge of contacting the LTFU population. Therefore, we continued contacting women from the treated group until we reached our target of 100 HPV positive women. The median age of the women was 40 and 35, for treated women and LTFU women, respectively. There were no significant differences in any of the demographic characteristics based on treatment status (see Table 1). Several facilitators and barriers to treatment seeking arose from the data, including social support and peer encouragement, partner support, and stigma, among several other logistical barriers.
Table 1: Sample demographics and reproductive characteristics
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Treated
N= 61
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LTFU
N= 39
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|
Demographic
Characteristic
|
N (%) or Median (IQR)
|
Exact
p-Value
|
Age (years)
Relationship Status
Married
Relationship Living Separate
Single
Widowed/Divorced
Education Level
Primary
Secondary
Tertiary/College
Other
Occupation Earning Income
Yes
No
Occupation Type (N=39)
Professional/Managerial
Agriculture and Fishing
Manual
Sales and Services
Other
Primary Income Earner (N=39)
Yes
No
Religion
Christian
Has Children
Yes
No
Number of Children
Number of Pregnancies
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40 (32.0-43.0)
37 (60%)
1 (2%)
1 (2%)
22 (36%)
45 (74%)
14 (23%)
2 (3%)
0 (0%)
25 (41%)
36 (59%)
2 (8%)
5 (20%)
4 (16%)
13 (52%)
1 (4%)
14 (56%)
11 (44%)
61 (100%)
58 (95%)
3 (5%)
4.5 (2.0-6.0)
6 (3.0-8.0)
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35 (30.0-40.0)
24 (61%)
0 (0%)
1(3%)
14 (36%)
34 (87%)
4 (10%)
0 (0%)
1 (3%)
14 (36%)
25 (64%)
0 (0%)
3 (22%)
0 (0%)
9 (64%)
2 (14%)
11 (79%)
3 (21%)
39 (100%)
36 (92%)
3 (8%)
4 (2.5-4.5)
5 (3.5-7.0)
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0.15
0.68
0.38
0.18
0.68
0.20
0.84
0.10
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*IQR – Interquartile range
*LTFU – Lost to follow-up
Logistical barriers
Cost of transportation and distance to the health facility were the most commonly reported barriers among all women; however, these did not differ significantly or meaningfully between treated and LTFU women. Additionally, while cost of transportation and distance to the health facility were both most frequently mentioned in the IDIs, cost of transportation was the predominant barrier selected in the survey. In the survey, women who sought treatment were asked what ways (if at all) treatment made them feel nervous or uncomfortable. Of the 69 women who sought treatment, 49% (n=30) reported there were none, and 27% (n=17) reported they were worried about the cost of transportation to the health facility. Among LTFU women, cost was the primary reason for delaying in seeking treatment, with 62% (n=24) of women reporting this barrier. Approximately 5% of women (n=2) cited travel distance and 5% (n=2) cited not knowing the treatment place as being barriers. The remaining 28% (n=11) cited other reasons such as logistical barriers, doctor and nurse strike, mechanical problems at treatment facility, fear of partner learning their HPV status, and losing the phone number needed to schedule the treatment appointment (Table 2). The IDIs also identified the biggest challenges faced by all women as the cost of transportation and distance to the treatment facility. Treated and LTFU women agreed the trip to Migori Hospital was long and costly.
Table 2: Logistical and other barriers to treatment
Barriers
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N (%)
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Treated (N=61)
In which ways did treatment make you feel nervous or uncomfortable
None
Worried about cost of transportation
Thought it would be painful
I was not sure it would work
Embarrassed of having a pelvic exam
Fear people would learn I am HPV positive
Other (fear b/c of how people were talking about treatment)
The trip from home to treatment facility was long
It was difficult to get money for trip to treatment facility LTFU (N=39)
Main reason for delaying seeking treatment
Cost
Other
Travel Distance
Not knowing treatment place
|
30 (49%)
17 (27%)
9 (15%)
2 (3%)
1 (2%)
1 (2%)
1 (2%)
59 (97%)
59 (97%)
24 (62%)
11 (28%)
2 (5%)
2 (5%)
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Social support and peer encouragement
Treated women were more likely than LTFU women to share their HPV test result with their peers (67% vs. 38%, p=0.007) and their family (61% vs. 38%, p=0.04). They also reported greater comfort levels discussing HPV results compared to LTFU women (p=0.01) and were more likely than LTFU women to know whether their peers tested (82% vs. 69%, p=0.17) and what their HPV status was (90% vs. 67%, p=0.027) (Table 3).
In the IDIs, nearly all treated women reported they knew friends or family who were diagnosed with HPV, and all those women also reported that those friends or family members sought treatment and shared their experience with them. In contrast, very few LTFU women knew friends or family who were diagnosed with HPV, and therefore knew few people who had sought treatment. In both groups, the person they knew who had experienced screening and/or treatment was likely to be a close friend or a co-wife in a polygamous household; other relatives were rarely mentioned.
Treated women spoke about their friends’ and families’ experiences in seeking and experiencing treatment in detail: they described why they decided to seek treatment, the method of transportation used, and almost all said they had a painless and simple procedure, and that they had manageable levels of discharge post-treatment. While LTFU women reported that people they knew were satisfied with treatment, they were more vague in their responses, with many responses centered around getting treatment “to improve their health.”
Treated women cited peer encouragement as a key motivator for seeking treatment and said that women coordinated to go to treatment together and talked openly about taking control of their health and stopping the disease before it becomes deadly. A treated woman said, “I used to share a lot with a friend who encouraged me that we should use that opportunity productively. So we made a decision to participate and get treated.” Another treated woman said, “We normally story [talk] in a group, and during that period we encourage one another to seek treatment, not to be a victim of risks associated with HPV.” There were several LTFU women who had been invited by other women to join them for treatment but did not have money for transport: “Yes, we did encourage ourselves and made a promise that if possible we will go for treatment as a group. But we allowed those of us who were ready to go. That is, if you have [money for] transport ready.” Overall, treated and LTFU women described markedly different experiences regarding peer encouragement.
During the IDIs, treated women more commonly said they have a trusted friend or family member that they can lean on for support. Social support manifest in multiple ways; women referred to having someone to talk to about their health, as well as someone to help with household chores and duties while away for treatment, and even had someone to attend treatment with. There were very few LTFU women who cited having someone to lean on for support, or that they had a trusted friend or family member that could help in the coordination of attending treatment. A LTFU woman referred to feeling alone in this endeavor and suggested that her socioeconomic status may have played a role, saying, “Yes, I have relatives and friends who are well off, but the haves never mixed well with the have not. They make promises which they never fulfill, so there is no need, we have to survive on our own.” Nearly all treated women expressed their interest in sharing their own experience in a group setting to encourage other women to go for treatment, and nearly all LTFU women said they were interested in hearing from those who had been through the treatment process.
Table 3: Peer network beliefs and behaviors among women who sought treatment and LTFU women
Peer Network Beliefs
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Treated
N=61
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LTFU
N=39
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Exact
p-Value
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Does partner know HPV result
Yes
No
Peers know your HPV result
Family knows your HPV result
Do you feel comfortable talking about result with close friends/family
Yes comfortable with everyone
Comfortable with some people
Not comfortable with anyone
Did any peers get tested for HPV
Yes
No
Do not know
Knew peers’ HPV status
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39 (64%)
22 (36%)
41 (67%)
37 (61%)
36 (59%)
18 (30%)
7 (11%)
50 (82%)
11 (18%)
0 (0%)
45 (90%)
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20 (51%)
19 (49%)
15 (38%)
15 (38%)
13 (33.3%)
13 (33.3%)
13 (33.3%)
27 (69%)
11 (28%)
1 (3%)
18 (67%)
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0.22
0.007
0.0404
.0123
0.17
0.027
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*IQR – Interquartile range
*LTFU – Lost to follow-up
Partner Support
Among the 41 treated participants who had a partner, 78% (n=32) reported they personally asked their partner to be part of the treatment process. Among the 9 women who did not ask their partner to be part of the treatment process, 56% (n=5) reported their partner would have helped them get treatment had they asked (Table 4).
During the IDIs, women’s comments on whether partners were supportive in encouraging and/or enabling women to seek treatment were conflicting, with some women reporting receiving support and others reporting a lack of support. When women talked about partners being supportive, it was usually in the context of providing money for transportation to the treatment facility. Some treated women said their husbands either encouraged them to seek treatment or accompanied them to the treatment facility:
“P: When I received the SMS that I tested positive, I shared that with my husband, and I could observe fear in him. I was brave to tell him that it’s a normal disease like the others and it can be treated. So that compelled me to seek treatment as fast as possible.
I: What else encouraged you to seek treatment?
P: I shared with my husband my treatment appointment date, and he was very happy about that. The only challenge we had was lack of money to get me to Migori, [treatment hospital] so I explained to him the challenge of missing treatment appointment, and he immediately promised to borrow that money from a friend. That was so gracious of him.”
Most women felt that they must rely on their husbands for transportation funds because women did not earn enough income to support that. Some women felt that if they told their husbands ahead of time, he would be able to help with household duties and childcare. One LTFU woman explained the conflicting support dynamics saying, “It depends with an individual, some will only provide that money when you are almost dying. They get to their senses when their friends challenge them to be responsible. Others take it as their own responsibility, and my husband I’m sure will support me.”
When women discussed lack of support from their partners, they usually attributed it to men being uninformed or misinformed about HPV. Due to their lack of knowledge of HPV, women felt that men were less inclined to encourage their partners to seek treatment and were less inclined to provide funds for transport to the treatment facility. Additionally, several women mentioned that if men knew they had to wait for sex for a while after treatment, they might not let their partner go to the treatment facility. A treated woman said, “You may share with him your test results, and because they are not that well informed about it, he will discourage you not to go for treatment.”
Additionally, women cited polygamy as a reason for lack of partner support. A LTFU woman related her experience relying on her partner to provide transport costs saying, “You can’t do that with a polygamous man, you have to have your own sources. He doesn’t care or he’s not aware of money issues affecting us. We are five of us; can you depend on a man like that? No. You have to have your own sources of income to support your family.” When women talked about decision-making in the household, most treated women said their husbands are the primary decision maker, while more LTFU women reported being the primary decision maker.
Table 4: Partner support among women who sought treatment
Form of Partner Support
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N (%)
|
Has partner asked how he can support in terms of seeking treatment
Yes
No
No Partner
Participant asked for partner to be part of treatment process (N=41)
Partner would have helped get treatment if participant had asked (N=9)
Where did participant get transportation fare from
Partner
Self
Other close relative
Other
Friend
Children
|
31 (51%)
10 (16%)
20 (33%)
32 (78%)
5 (56%)
23 (38%)
16 (26%)
11 (18%)
6 (10%)
4 (6%)
1 (2%)
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Stigma
Stigma within the community often came up overtly when participants brought up concerns that men and women in the community would mistake them as a prostitute for seeking treatment. A treated woman said, “We are facing a lot of challenges in our families because at time our men think we are going out to prostitute, so some of us even if they test positive will not even think of going for treatment because of such.” One participant explained that HPV is so new that nobody is talking about it. Reports of negative influence or shame were limited among treated women, although a couple of participants mentioned that other women shared negative sentiments about treatment, such as “People can also discourage and stigmatize you not to seek treatment.”
Knowledge and fear
Lack of information or misinformation about HPV and cervical cancer came up frequently in the IDIs. Women generally knew the risk involved with HPV, but some women struggled to understand the difference between having HPV and having cervical cancer. Women knew that cancer could not be cured and that if HPV is diagnosed early enough it can be treated, but they typically did not have knowledge of HPV beyond this. Women in both groups openly stated they did not have enough information on HPV and would like additional information and counseling. Many women reported that even though they had some counseling on HPV during screening, when they got their positive HPV test result, they immediately assumed they had cancer.
“P: [I was scared when] I was diagnosed with HPV.
I: Why were you scared?
P: By having HPV made me think that I had cervical cancer.”
Fear emerged often as a barrier to treatment in both groups of women; in most cases, it was regarding as fear of dying after receiving their positive HPV diagnosis. Some women reported they feared the treatment process, specifically concerned it would be painful or lead to complications later.
Proposed treatment facilitators
During the IDIs treated and LTFU women provided personal reasons for seeking treatment, or reasons for wanting to seek treatment. Most treated women cited the influence of others as a reason for seeking treatment. This consisted of encouragement from peers, partners, neighbors, children, health professionals, and co-wives in polygamous households. One treated woman said, “What encouraged me were what my friend shared and the possibility that if the disease is detected early enough it can be treated, so I had to try my luck.” On the other hand, very few LTFU women were encouraged by friends or relatives to seek treatment and instead reported wanting to be healthy as their reason for wanting to seek treatment. This was also mentioned among treated women:
“Engaging them in a group is more effective than dealing with individuals. I’m comfortable being with the others when I’m being engaged in this kind of issue. Being on your own is stressing a lot … because we are always on our own after receiving that result, no nurse or doctor to talk to.”
All women recommended improving partner support for treatment: involving men in counseling with their wives and including men in conversations about cervical cancer were overwhelmingly encouraged. A LTFU woman said, “We should love each other; that will enable us to bear each other’s burden, and if we can engage men, they’ll understand that this disease does not come because of prostitution. So we should counsel couples together.” Many women felt that if health professionals talked to men themselves about the risks of cervical cancer, men would be more receptive to the information than if it came only from their wives.
In addressing stigma, treated women encouraged healthcare providers to protect patients’ privacy, to make sure treatment is uniform across all patients, and to support and counsel women to access treatment. LTFU women more often discussed addressing stigma and recommended bringing facilities and services closer to them to keep their status private. Additionally, LTFU women felt that continued sharing of their treatment experiences would help eliminate stigma related to HPV in the community.
Providing money for transportation, providing a vehicle to shuttle women to the hospital in groups, and bringing the health services closer to them were overwhelmingly the most highly recommended treatment facilitators, although these did not differ across treated and LTFU women. Additionally, women recommended delivering test results and treatment instructions through a door-to-door format, rather than over SMS or phone call, to ensure the message makes it to everyone.