Study profile.

Between the period between 03/12/2024 and 30/08/2025, a total of 410 adolescent girls living with HIV were screened at the JCRC and Mildmay Uganda HIV care and treatment centers. Of these, 28 adolescents who had already completed HPV vaccination and 11 who declined consent were excluded, resulting in a final study sample of 371 participants. This included 182 adolescents at JCRC and 189 at Mildmay Uganda. By the end of the study, 342/371 (92%) adolescents had completed their HPV vaccination, while 29/371 (8%) had received only one dose of the vaccine. Additional participant characteristics are shown in Table 1 and Fig 1.

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Table 1. Baseline characteristics of 371 HIV positive adolescent girls included in the study.

https://doi.org/10.1371/journal.pone.0356686.t001

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Fig 1. Study profile showing participant recruitment at JCRC and Mildmay Uganda.

https://doi.org/10.1371/journal.pone.0356686.g001

Human papillomavirus knowledge.

The study found that among the 371 adolescent girls living with HIV, only 95/371(25.6%) reported being aware of the human papillomavirus (HPV), indicating generally low levels of awareness in this population. Further, the 95 participants who reported awareness of HPV were further interviewed regarding specific aspects of HPV, and their responses are summarized in Table 2.

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Table 2. HPV Knowledge among 95 adolescent girls living with HIV.

https://doi.org/10.1371/journal.pone.0356686.t002

Initiation of HPV vaccination at the start of the study.

Among the 371 who participated in the study, 320 (86.3%) had not initiated HPV Vaccination at baseline, while only 51 (13.7%) had initiated vaccination. The majority of participants who had not initiated HPV vaccination reported that they were either not aware about the vaccine or they did not know that they needed to be vaccinated. Other reasons are shown in the notes on Table 3. Among the 13% of respondents that had initiated but not completed the HPV vaccination schedule, the common reasons they cited why adolescents don’t initiate vaccination were: lack of awareness regarding of the need for subsequent doses, lack of the vaccine at the health facility when they returned, and failure by healthcare workers to offer follow-up doses. Other reasons are detailed in the notes on Table 3.

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Table 3. Initiation of HPV vaccination among the 371 adolescents at the start of the study.

https://doi.org/10.1371/journal.pone.0356686.t003

Theme 1: Fragmented knowledge and persistent misconceptions about HPV, cervical cancer, and the vaccine.

Across adolescent, caregiver, and health worker accounts, awareness of HPV and HPV vaccination was present but often shallow, fragmented, or mixed with incorrect beliefs. Adolescents and caregivers frequently recognised HPV as being linked to cervical cancer, but they also described inaccurate routes of transmission, uncertainty about eligibility, confusion about where the vaccine is administered, and incomplete understanding of dose schedules. Health workers similarly noted that the system had often emphasised screening more than vaccination, leaving both families and some providers with incomplete knowledge.

“Some of them have never even heard about the HPV Vaccine.” (Adolescent participant, FGD, JCRC)

I think that if an infected person uses a dirty toilet or latrine, and then another person uses it, that person can also get infected with the HPV virus.” (Adolescent participant, FGD, JCRC)

“Growing up, it was linked to girls who had not yet become sexually active, so some people still think that once a girl has had sex, she cannot get the vaccine.” (Volunteer medical worker, KII, JCRC)

“It is not that HPV is completely new here; it is just not talked about enough. People do not know enough about it to have a proper conversation.” (Volunteer medical worker, KII, Mildmay UG)

Theme II: Fear, rumours, and adverse-event narratives undermined confidence in vaccination.

A second theme concerned fear and mistrust. Adolescents described being discouraged by warnings that the vaccine was painful or dangerous. Participants and health workers reported widespread rumours that HPV vaccination causes infertility, death, or other bodily harm. These narratives were not peripheral; they were repeatedly described as active barriers that shaped refusal, delay, or hesitancy. Uncommon but influential adverse-event stories, including rashes or dizziness after vaccination, also circulated and appeared to reinforce mistrust.

“Some people mislead others. You may be going for vaccination, and someone tells you, ‘If you take it, you will die.’” (Adolescent participant, FGD, Mildmay)

“One of the things that is actually killing uptake is awareness, because there is a lot of misinformation and disinformation out there.” (Vaccine technical officer, KII, Mildmay)

“Why was it that some of us felt dizzy after vaccination?” (Adolescent participant, FGD, JCRC)

“After my sister received the vaccine, she developed a rash, and I became very scared and feared to get the vaccine.” (Adolescent participant, FGD, JCRC)

“There are some people who say these vaccines will make the girls fail to give birth or become barren, and once the parent is convinced of that, the adolescent also refuses.” (Village health team member, KII, Mildmay)

Theme III: Vaccine uptake decisions were socially mediated by parents, peers, schools, and health workers.

The decision to start or complete HPV vaccination was rarely described as an individual choice alone. Instead, it was embedded in a social environment shaped by parents, caregivers, peers, teachers, schools, and providers. Adolescents reported hearing about HPV through schools, hospitals, friends, and conversations in the community. They said that parents remained decisive gatekeepers, especially where girls were young or where consent was expected. Health workers also described peers, teachers, and school structures as important facilitators of uptake and completion.

“Once the parent is not comfortable with the vaccine, the child will also not take it.”(Vaccine technical officer, national programme KII)

“There were some girls, my friends, I was explaining to about HPV vaccine, but they had many questions and I gave up.” (Adolescent participant, FGD, JCRC)

“The caregivers always tell us that it is important to inform parents and guardians when their children are going to be vaccinated, because many times parents are not informed.” (Nurse, KII, JCRC)

“The main factor is the parent. If the parent does not consent and says, ‘You are not vaccinating my child,’ then that child cannot be vaccinated.” (Enrolled nurse, KII, Mildmay)

Theme IV: HPV vaccination was weakly integrated into routine HIV care.

Health worker informant interviews revealed that HPV vaccination was often not embedded consistently within routine HIV care pathways. In several settings, providers described counselling or referral as the main approach rather than vaccination within the HIV care and treatment centres. Some respondents explicitly stated that HPV vaccine had not been fronted as a standard service within adolescent HIV clinics. Others described fragmented arrangements in which HPV vaccine information was given in one unit but vaccination was offered elsewhere. This lack of integration appears to have contributed to missed opportunities, weak ownership within HIV clinics, and inconsistent follow-through. This approach left some health workers within HIV treatment centres lacking adequate information or up to date knowledge on HPV vaccine.

“Most times we are focused on the routine review and solving immediate complaints, but for HPV specifically there has not been a lot of enthusiasm.” (Paediatric clinician, KII, JCRC)

“Many health workers actually do not know the schedule. Even personally, I know the vaccine is there, but the details of when and how long are not always clear.” (Paediatric clinician, KII, JCRC)

“It is discouraging when people come to the hospital and do not find the vaccine available. They go back and tell others that the service is not there.” (Community mobilizer at JCRC, KII)

“From my experience, HPV is not usually presented as one of the routine services within adolescent HIV clinics. Yet if it were included, it would be very beneficial because these girls already come there for care.” (Public health officer, national-level KII)

Theme V: Access, documentation, and follow-up barriers limited initiation and completion.

Participants consistently described structural barriers that affected both uptake and completion. These included distance to health facilities, missed opportunities for vaccination, stock-out of vaccines, weak communication between schools and families, incomplete use of vaccination cards and registers, and inconsistent follow-up for subsequent doses. Several health workers described practical systems for cards, registers, and phone calls, but these systems were not uniformly strong across sites. Provider interviews also revealed uneven familiarity with evolving HPV vaccine dose schedules, which suggests that service delivery systems were changing faster than frontline understanding in some settings.

“Some people are deep in the village and want the vaccine, but transport to the hospital is a problem, so they remain there.” (Community worker, KII, Mildmay)

“Some girls forget their appointment dates, some lose their cards, and some receive vaccines from school without proper documentation, so follow-up becomes difficult.” (Adolescent nurse, KII, JCRC)

“There are times when we have stock-outs of HPV vaccine, and that completely disorganizes uptake.” (Vaccine technical officer, national programme KII)

“Usually, uptake of the second dose is poor because some children have already left for school so uptake of the second dose is really low.” (Vaccine technical officer, national programme KII)

“If vaccination is done on the same date as their clinic appointment, it is easier. But if the days are separated, it is not easy for them.” (Young adolescent peer supporter, KII, Mildmay)

“We have a register where each vaccinated girl is recorded, including whether she received the second dose. We also give them cards.” (Midwife, KII, Mildmay)

Theme VI: Participants proposed practical service improvements to increase uptake and completion.

The final theme concerned solutions. Across FGDs and KIIs, participants suggested more intensive community and school sensitisation, stronger counselling, better communication with parents, reliable vaccine availability, closer integration with HIV clinics, use of peers and VHTs, and more deliberate follow-up systems. Importantly, respondents did not describe adolescents living with HIV as fundamentally resistant to vaccination. Rather, they saw poor uptake as a modifiable systems problem that could improve if information, access, and follow-up were strengthened.

“I request you go to school and educate girls on the danger of the disease and vaccinate them, then next time you go back and vaccinate them and also educate them as a whole.” (Adolescent participant, FGD, Mildmay)

“We need to educate health workers too not everyone is confident talking about HPV, the schedule, or where girls should go.” (Enrolled nurse, KII, Mildmay)

“The most important thing would be sensitizing parents telling them the importance of the vaccine, the dangers of the disease, and why early protection matters.” (Enrolled nurse, KII, Mildmay)

“What we can do is to go to schools… then also go to communities to educate them… because parents are big decision-makers in the lives of these children.” (Health worker, Mildmay KII)

“Working with religious leaders to address the misconceptions and then use of radio talk shows and community outreaches to continue educating the masses about the importance of vaccination… by doing so we shall have high uptake.” (Programme supervisor, Kampala KII)

Theme VII: Challenges with adherence and follow up in care centres and other health system barriers.

The health workers reported challenges related to adherence to the HPV vaccination schedule and follow-up of adolescents living with HIV. Some adolescents receive vaccines through school-based programmes, resulting in fragmented records and difficulties in tracking vaccination status. In addition, the absence of formal immunisation services within HIV care and treatment centres complicated follow-up and continuity of care, making it difficult to ensure timely completion of the vaccination schedule.:

“Some of the girls forget their appointment dates and it’s really hard to follow up, some of them lose their cards and it’s really hard to follow up, some of them get vaccines from schools and they are not given cards and it’s really hard to follow up, that’s some of the reasons.” (KII, Adolescent Nurse).

“Most times we have a challenge like following them up most time they can do first dose second dose, most times you need to call them and some still don’t come.” (KII, Nursing officer).

“There are issues with follow up, where these children get lost from the clinic, when they are lost it is just like the experience with ARVs, some also disappear or go away from the clinic and you have to look for them so it may delay treatment rather the receipt of vaccine The other one is school, sometimes they go to school and they don’t get a chance to have an outreach.” (KII, Health Worker, Public Health Officer, JCRC).

“For me, for the second dose, we went to the hospital and they told us that the vaccines were over. We went to a different hospital and they said there was no vaccine.” (FGD participant, JCRC).

“Availability of the vaccines is still a challenge because in most cases when you ask a clinician where one can access the HPV vaccine; it will take him time to think of where one can get it. Most clinicians are not aware of where to refer patients if need arises unlike hepatitis B which is available at every facility either government or private.” (KII, Health worker JCRC).

“I struggled to get the vaccine for my daughter; we received the first dose and for second dose we were referred to a facility without the vaccine.” (KII, Mild May).

Cross-cutting uncommon/minor themes.

In addition to the dominant themes, several less frequent but important findings include the belief that HPV can be acquired from dirty toilets, shared clothes, or contaminated family-planning procedures; uncertainty about whether boys and men should also be vaccinated; concern that outreach-delivered vaccines are less trustworthy than hospital-based vaccines; and a view among some health workers that adolescents living with HIV sometimes avoid added vaccination because they already feel burdened by lifelong treatment.

“Seeing they are on ARVs, they just see that their lives are going to be messed up with by adding these vaccines.” (Health worker, Mildmay KII)

Concerns regarding adverse events following HPV vaccination.

Some respondents expressed fears regarding adverse events following HPV vaccination, particularly concerns about future fertility:

“I went with my parent to get the first dose though it was painful, and as a result, I have never gone for the second dose.” (Adolescent at JCRC FGD).

Negative Peer influence.

Peer influence played a role in vaccine refusal among some adolescents:

“There are many friends at school who don’t want the vaccine, and advice other girls not to get it. Some says the vaccine causes cancer or kills you slowly.” (FGD participant, JCRC).

Negative attitude of health workers.

Some of the adolescents described unfriendly or discouraging interactions with health:

“There is a nurse who is very harsh, and shouts at us or talks in a mean way and doesn’t encourage you when you have fears or questions about vaccines.” (FGD participant, Mildmay).

Barriers to HPV vaccine uptake in adolescent girls living with HIV.

We documented several barriers hindering HPV vaccine uptake among HIV-infected adolescents in Kampala, Uganda. These included the lack of clear immunisation programmes specifically targeting this vulnerable population, with HIV treatment centres operating parallel to mainstream public health programmes and thus often being excluded from routine child survival initiatives. Other barriers included limited knowledge about the HPV vaccine among caregivers and eligible adolescents; myths and misconceptions; fears of adverse events following immunisation (AEFIs); health system deficiencies; loss to follow-up and inadequate supply of vaccines in some seasons. Numerous studies across Africa have documented inadequate knowledge/information about HPV, cervical cancer and the role of HPV vaccination in cancer prevention as a significant barrier to uptake [25,33,36]. Improving vaccination coverage among adolescents who are unaware of the disease or the vaccine remains challenging. There is therefore a need for the Ministry of Health and the national immunisation programme to fully integrate HIV care and treatment centres into routine immunisation services. The fear of AEFIs remains a major hindrance to HPV vaccine uptake, not only in this study but in other reports as well [33]. Other barriers reported in other studies include inadequate numbers of healthcare workers to deliver vaccination services at the health facility [41], myths, rumors and misconceptions about the HPV vaccine, including fears of infertility or barrenness [33,41]; parental refusal to consent for vaccination [33]; and school non-attendance or dropout, which reduces HPV vaccination completion rates because they are likely to miss school-based vaccination days [33].

This study found that fear and mistrust were not peripheral issues but central mechanisms shaping hesitancy. Participants described fears of pain, infertility, death, and bodily harm, and these concerns were reinforced by rumours, anecdotal adverse-event stories, and broader distrust of vaccination. These concerns are highly consistent with prior Ugandan studies. In northern Uganda, fear of side effects, discouragement from peers and caregivers, and negative community messages were reported as major reasons girls failed to start or complete the HPV vaccine series [33]. In Kampala, Patrick et al. similarly identified concerns about efficacy, safety, and misinformation as barriers to timely completion [25]. The Kampala school-based study by Bitariho et al. also reported negative parental beliefs, superstitions, and safety concerns around HPV vaccination, indicating that fear and misinformation are not confined to rural or remote settings [34].

What appears more specific in our study is the way these fears interacted with the lived experience of HIV care. Some respondents suggested that adolescents already taking lifelong ART, or other medicines, could view HPV vaccination as one more burden. Others described the added injection as being interpreted by parents through the lens of vulnerability, reproductive threat, or over-medication. This layering of HPV vaccine hesitancy onto the realities of long-term HIV treatment is important because it suggests that generic vaccine messaging may be insufficient for girls living with HIV. A more recent Ugandan study from Greater Masaka similarly found low HPV vaccine uptake among girls and young women living with HIV, and reported that stronger HPV knowledge was associated with higher odds of vaccination [42]. Our findings deepen that result by showing why knowledge matters: it is not merely factual understanding, but explanation strong enough to counter fear, fertility rumours, and treatment fatigue.

Another finding was that vaccine decisions were socially mediated rather than individually made. Adolescents described learning about HPV through schools, peers, hospitals, and community conversations, but caregivers repeatedly positioned themselves as the most trusted and decisive source of final advice. This point directly addresses the reviewer query about trusted sources of advice. In our data, parents and caregivers were the central gatekeepers for younger girls, while peers, teachers, schools, and providers shaped whether girls felt informed and supported enough to act. This aligns with wider Ugandan evidence. Rujumba et al. found that caregiver approval, teacher involvement, and community-based mobilization strongly influenced HPV vaccination decisions in northern Uganda [33]. In Mulago, Patrick et al. showed that peer influence and healthcare worker recommendation positively influenced timely completion [25]. In western Uganda, Asiimwe et al. reported that caregiver education and knowledge of HPV vaccination were significantly associated with uptake, again reinforcing the importance of the household informational environment [43].

Our study adds to this literature by showing that social mediation was not only about consent, but also about coordination. Parents wanted advance notice from schools, adolescents described trying to persuade peers, and some providers described peer supporters and home visits as practical routes for follow-up. In other words, trusted advice operated through a layered network rather than a single source. Parents remained the most credible authority for younger adolescents, but peers, teachers, and adolescent-friendly clinic staff were often the actors who translated that authority into action. For programme design, this means HPV communication for girls living with HIV should not target adolescents alone. It should deliberately include parents or guardians, use peer-support systems already present within adolescent HIV care, and strengthen the communication chain between schools, facilities, and households.

This study also found that the weak or uneven integration of HPV vaccination into routine HIV care. Many providers described counselling or referral rather than actual vaccination within the HIV care pathway, and some said HPV vaccination was not yet treated as a standard element of adolescent HIV services. This is consistent with the recent Mulago HIV-clinic study by Nakibuuka et al., which reported low vaccination uptake among adolescent girls living with HIV and noted that eligible girls were referred from the HIV clinic to other service points for vaccination [43]. It is also consistent with the Mulago completion study by Patrick et al., where completion was influenced by static and outreach service organisation rather than by a seamlessly integrated pathway inside HIV care [25].

The present study advances this literature by showing how weak integration actually feels in practice. For some participants, HPV vaccination existed as information in one unit, screening in another, and vaccination in yet another service point. For others, HPV was not part of the routine mental checklist of HIV care even though girls living with HIV were recognised as a priority group. This does not necessarily mean that every HIV clinic must directly stock and deliver HPV vaccine. The more practical implication to fit current service-integration agendas is that HIV clinics should reliably perform the functions that lie within their remit: identify eligible girls, provide accurate counselling, document vaccination status, align care pathways, and ensure that referrals are completed rather than merely advised. This interpretation is more realistic than concluding that HIV clinics are simply lagging behind.

Another major finding of this study was that practical barriers in access, documentation, and follow-up played a major role in non-initiation and especially non-completion of HPV vaccination. Participants described transport barriers, stock-outs, weak documentation, limited use of cards and registers, fragmented referral pathways, and poor follow-up for subsequent doses. These findings closely mirror the Kampala evidence from Mulago, where timely completion of the second HPV dose remained low and where improved social mobilisation, outreach, static vaccination approaches, and better education of eligible girls were recommended to strengthen completion [25]. They also resonate with findings from northern Uganda, where mobility between doses, school absenteeism, and weak follow-up disrupted completion [33]. In western Uganda, distance to the facility was significantly associated with uptake, again underscoring that service access remains a structural barrier even when the vaccine itself is provided free of charge [43].

Our study adds an important HIV-specific layer to these operational problems. Several key informants described a mismatch between ART appointment schedules and vaccine schedules, and some explicitly recommended aligning vaccination visits with routine HIV visits or embedding reminders into clinical systems.

Suggestions to improve HPV vaccine uptake and completion among adolescent girls living with HIV.

A number of adolescents and key informants suggested several strategies to improve HPV vaccination uptake among adolescents living with HIV. One of the most frequently emphasized was the availability of the HPV vaccine at the HIV drug refill sites for people living with HIV. Providing HPV vaccination at HIV treatment centers is critical, as most adolescents living with HIV adhere well to their hospital appointments and trust the healthcare workers at these facilities [36]. This approach would greatly reduce barriers related to access and improve HPV vaccination uptake. Participants proposed need for more intensive counselling, repeated school and community sensitization, stronger parent communication, more reliable vaccine availability, use of peers and VHTs, and deliberate reminder systems. Additionally, we propose contextually adapted community sensitization and stronger information systems, improved social mobilization, outreach, and education for eligible girls. Counselling from community members and community outreach platforms have the potential to support uptake among girls living with HIV.

Another key suggestion was increasing awareness and sensitization about HPV, HPV-related diseases, and the importance of vaccination among adolescents, their parents, healthcare workers, and the community at large [36]. Improved awareness would empower adolescents to seek out HPV vaccination and ensure timely completion of the recommended doses.

Consistent with findings from other studies [30,33,38,41], additional suggestions included ensuring continuous availability of vaccines at all facilities, increasing the number of trained healthcare workers to administer vaccines, strengthening school-based delivery programmes through engagement with school authorities, and integrating HPV vaccination into existing routine childhood immunisation and other adolescent health programmes. Enhancing school-based delivery remains a promising strategy, as it targets adolescents in settings where they spend most of their time and supports timely vaccination. This, however, must be adapted for adolescents living with HIV to ensure adherence to the recommended dosing schedule. A potential challenge is stigma, as adolescents may face questions from their peers if they are required to receive additional doses beyond what is provided to others. Reducing stigma is multi-faceted and requires input from different players/actors. Language use, use of mass media in destigmatizing HIV and HPV vaccines, health education on the disease and vaccine and drivers of stigma and fear and confidence building initiatives is critical in addressing the problem of stigma

Other proposed strategies included adopting a provider-initiated approach to HPV vaccination, given the low awareness among adolescents, and integrating HPV vaccination prompts into hospital information system, similar to existing systems for tuberculosis (TB) screening, so that patient records cannot be completed without documenting HPV vaccination status [36]. Provider recommendation has been shown to strongly influence vaccine uptake, as demonstrated by successful cervical cancer screening programmes among women living with HIV at almost all HIV treatment centers.

Some adolescents suggested mandatory vaccination policies and extending the vaccination to people’s homes and communities. While these approaches may increase coverage, they could face resistance if awareness is not accompanied by adequate community sensitization and education to foster understanding of the need for vaccination and encourage voluntary uptake. In this study, qualitative sample was designed to provide explanatory depth rather than statistical representativeness, and some beliefs captured in interviews reflect participant understanding rather than biomedical fact. However, those beliefs remain analytically important because they shape behaviour and help explain why routine health messages do not always translate into vaccine acceptance.