Cervical cancer screening policies and implementation in Uganda - a qualitative study on policymakers’, cervical cancer experts’ and gynecologists’ perspectives

Abstract

Background

Cervical cancer remains the leading cause of cancer-related mortality among women in Uganda, despite national strategies to expand screening. Visual inspection with acetic acid is the predominant method used, while human papillomavirus testing, including self-sampling, is endorsed as a more effective alternative. However, screening uptake remains critically low. This study explores the current state of cervical cancer screening in Uganda, examining barriers and facilitators to implementation, and assessing stakeholder perspectives on community-based self-sampling as a potential strategy to expand coverage.

Methods

A qualitative cross-sectional study was conducted between March 2022 and March 2023 in Kampala, Mukono, and Wakiso districts. Semi-structured interviews were carried out with 12 key informants, including policymakers, cervical cancer experts, and gynecologists. Participants were purposively selected based on their involvement in cervical cancer screening. Thematic analysis was performed using deductive and inductive coding, guided by the World Health Organization’s health system building blocks framework.

Results

Participants identified multiple barriers to screening, including low awareness, fear, limited accessibility, workforce shortages, and logistical constraints that compromise service quality and continuity. Services were concentrated in higher-level facilities, and efforts were perceived to focus mainly on women living with human immunodeficiency virus. Despite policy support, implementation gaps persist, and the health system remains heavily reliant on international implementing partners for funding, training, and service provision. Community-based self-sampling was perceived as highly acceptable, with potential to overcome demand- and supply-side barriers through privacy and outreach. Concerns included logistical feasibility, quality control, and sustainability.

Conclusions

Uganda faces growing pressure to expand cervical cancer prevention as more unvaccinated women reach middle age. The health system is not yet prepared to meet this demand, and sustainable national investment will be essential to reduce donor dependence. The roll-out of HPV-based screening, complemented by community-based self-sampling and strong health education, offers a feasible pathway to expand access and accelerate progress toward WHO’s cervical cancer elimination targets.

Supplementary Information

The online version contains supplementary material available at 10.1186/s13690-025-01749-3.

Text box 1. Contributions to literature
∙ This study provides a multi-level analysis of cervical cancer screening in Uganda, drawing on perspectives from policymakers, experts, and gynecologists, and goes beyond mapping barriers to explore how innovative strategies can be implemented within existing constraints.
∙ Highlights the importance of targeted, sustained health education in all screening approaches.
∙ Demonstrates the advantages and disadvantages of embedding screening within HIV and reproductive health services.
∙ Offers evidence on the acceptability and feasibility of community-based HPV self-sampling, noting opportunities and challenges.

Background

Cervical cancer ranks as the fourth most common cancer among women worldwide, disproportionately affecting low- and middle-income countries (LMICs). In Uganda, it remains the leading cause of cancer-related deaths among women [1]. In response to this global burden, the World Health Organization (WHO) has set a target to eliminate cervical cancer by the end of the 21 st century. The strategy outlines three key objectives: vaccinating 90% of girls against human papillomavirus (HPV) by age 15, screening 70% of women using high-performance tests by ages 35 and 45, and treating 90% of identified cases of precancer and cancer. However, many countries, particularly those most affected, continue to face significant challenges in meeting these targets. Scaling up cervical cancer prevention services is therefore critical to achieving the WHO’s elimination goals.

In 2010, Uganda’s Ministry of Health (MoH) launched the Strategic Plan for Cervical Cancer Prevention and Control (2010–2014), which emphasized health worker training, the expansion of a screen-and-treat approach with visual inspection with acetic acid (VIA) in a phased and decentralized manner, and the integration of screening into existing health services such as HIV care, family planning, and postnatal care [2]. The plan recommended triennial screening for the general population and annual screening for women living with HIV. These efforts were reinforced with the National Cervical Cancer Prevention and Control Strategic Plan (2018–2023), which sought to intensify prevention efforts [3].

In alignment with WHO recommendations, HPV DNA testing is increasingly recognized as the preferred primary screening method due to its high sensitivity and suitability for self-sampling. Uganda’s most recent strategic plan (2018–2023) advocates for the integration of HPV DNA testing within the existing VIA-based screening framework [3]. Additionally, Uganda’s Consolidated Guidelines for the Prevention and Treatment of HIV and AIDS designate HPV testing as the country’s primary cervical cancer screening method [4].

In 2020, the Ministry of Health’s AIDS Control Program led a major expansion of cervical cancer prevention services for women living with HIV. Funded primarily by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), with additional support from the Global Fund and the Clinton Health Access Initiative, the program significantly increased the number of HIV clinics offering cervical cancer screening and improved the number of women screened, as well as those treated after a positive result [5].

As of the most recent available data from 2019, national cervical cancer screening coverage in Uganda remains critically low, with only 9–10% of women having ever undergone screening [6, 7]. Although this figure highlights a significant gap in prevention efforts, updated national data are currently lacking. Moreover, over 80% of the approximately 6,000 women referred annually to the Uganda Cancer Institute present with advanced-stage disease [8]. VIA remains the predominant screening method in Uganda, while HPV DNA testing is recommended by WHO as the preferred primary approach, including in low-resource settings [9].

Despite these initiatives, scaling up screening services remains challenging within Uganda’s decentralized healthcare system, which spans health centers of different levels from I–IV, general or district hospitals, regional referral hospitals, and the national referral hospital [10]. The Uganda Cancer Institute also plays a central role in cancer management as an autonomous government agency responsible for coordinating cancer prevention and control nationwide.

Despite the proven efficacy of early detection through screening, Uganda continues to face significant barriers at multiple levels. At the individual level, low awareness, limited perceived risk, fear of pain, stigma associated with cervical cancer, competing life priorities, and widespread misconceptions contribute to the low uptake of screening services among women [11, 12]. At the health system and structural levels, critical obstacles include resource constraints, concerns about service quality, and persistent inequities in healthcare access [8, 13].

Pilot studies conducted in Uganda have demonstrated high acceptability of self-collected samples for HPV testing [14–16]. National policymakers increasingly recognize the benefits of HPV testing and self-sampling approaches [17]. Given these developments and the persistent low uptake, there is an urgent need to explore the integration of HPV testing and self-sampling into community-based health services.

This study aims to critically examine the current state of cervical cancer screening initiatives. In light of emerging innovative interventions, such as community-based self-sampling strategies, it also seeks to provide a more comprehensive understanding of the barriers and facilitators influencing the implementation of screening programs and to elicit stakeholder perspectives on how such innovations could address these challenges.

Methods

Study design and setting

A qualitative cross-sectional study was conducted between March 2022 and March 2023. Semi-structured interviews (SSIs) were conducted among policymakers (P), cervical cancer experts (CCE) and gynecologists (G) in the districts of Kampala, Mukono and Wakiso, Uganda. An interview guide was developed comprising open-ended and probing questions to explore perceptions of the cervical cancer situation in the country, existing guidelines, roles and responsibilities, the current state of screening services, available resources, competing priorities, and views on self-sampling and community-based screening. Additionally, gynecologists were specifically asked about the barriers and facilitators influencing current screening uptake.

Recruitment procedure

Purposive sampling was employed to recruit policymakers, cervical cancer experts and gynecologists based on predefined eligibility criteria. Policymakers were required to work for a national or regional health authority in Uganda, be involved in cervical cancer screening, and have at least five years of experience. Experts were selected from organizations providing cervical cancer screening services, ensuring representation across public, private, and non-governmental sectors. Inclusion criteria for gynecologists were current practice in Uganda and a minimum of one year of professional experience.

Recruitment was facilitated through district officials and technical experts engaged during community inception meetings, who assisted in identifying potential participants. Candidates were then contacted via email and phone to confirm eligibility and schedule interviews.

Data collection

Field activities were coordinated by researchers from the Uganda Virus Research Institute (UVRI). Four experienced interviewers (with over 5 years of experience) conducted the interviews: two males and two females – M.N. (BSc, research assistant), M.W. (MSc, interviewer), P.M. (BSc – research assistant), and I.S. (MSc, research assistant). All field team members received training on data collection procedures, the SSI guides, and ethical considerations. The interview guides were piloted prior to data collection.

Interviews were conducted individually in either English or Luganda. At the start of each interview, the interviewers introduced themselves, including their names, institutional affiliation (UVRI), the role of the organization, and the nature and purpose of the study. While participants were aware of the interviewers’ affiliation with a research institution, they were not given specific background details about the interviewers. The reporting of this study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (see additional file 1) [18].

Data analysis

Audio recordings were transcribed verbatim, and interview notes were incorporated. Transcripts conducted in Luganda were translated into English. Transcripts were not returned to participants for review. Two researchers, E.D.P. (MD) and G.N. (BASS, MPH), independently coded the transcripts using NVivo 12. Thematic analysis was conducted, combining deductive coding based on interview guide topics with inductive coding for emergent themes [19]. This process resulted in the following main codes: perceptions of the cervical cancer situation in Uganda; knowledge of cervical cancer, HPV, and screening programs; guidelines and assigned roles in screening; the current state of screening services; perceptions of the current available resources and competing priorities; barriers and facilitators to screening uptake; and perspectives on alternative strategies. The constant comparison method was applied throughout to ensure coding consistency [20].

Findings were organized into four analytical domains (see Fig. 1): [1] burden of cervical cancer in Uganda [2], individual-level barriers [3], structural- and health-system-level barriers, and [4] exploring alternative screening approaches. To guide the analysis of structural- and health-system barriers, we applied the WHO health system building blocks framework which outlines six essential components of a strong health system and is recommended by the WHO as a basis for designing national cervical cancer prevention and control programmes [21]. The six components include: [1] Service delivery, referring to the nature and scope of services provided, with key characteristics including accessibility, comprehensiveness, coordination, coverage, continuity, and quality; [2] Health workforce, which focuses on the availability, distribution, and capacity of personnel involved in service provision; [3] Information systems, encompassing the compilation and analysis of data related to the cervical cancer burden; [4] Leadership and governance, assessed through rules-based indicators (the existence of a policy) and stakeholder participation; [5] Health financing, which examines the mobilization and allocation of financial resources to meet population health needs; and [6] Access to medicines and technologies, including the availability and deployment of medical products and technologies critical to cervical cancer prevention and control.

Fig. 1.

Conceptual framework for organizing findings on cervical cancer screening in Uganda into four analytical domains. Note: Structural- and health-system-level barriers are structured using WHO’s building blocks of health systems, including service delivery, health workforce, information systems, leadership/governance, health financing, and access to medicines and technologies [21]

Results

Sample characteristics

A total of 12 professionals were contacted for interviews, and all agreed to participate. The final sample included 12 participants: 11 male and 1 female. Participants comprised 3 policymakers, 3 cervical cancer experts, and 6 gynecologists (see Table 1). Of the policymakers, two were from the district level and one was affiliated with the MoH Department of Non-Communicable Diseases (NCDs). The cervical cancer experts were drawn from the public, private, and non-governmental sectors, with two specialized as gynecological oncologists. The gynecologists practiced at various levels of the health system, including health center IVs, district hospitals, and a regional referral hospital; one was affiliated with a private hospital. Interviews were conducted once per participant, with no repeat interviews, and lasted between 45 and 60 min. All interviews took place at the workplace of the participants. The research team discussed data saturation during the analysis process to ensure sufficient thematic depth and coverage.

Table 1.

Characteristics of the participants of the semi-structured interviews conducted in Uganda between March 2022 and March 2023

Category	Institution/Organization	Age	Gender	Role
Policymaker (P1)	MoH Department of NCDs	48	M	Development of guidelines and standards, mobilization of resources and building capacity of health workers
Policymaker (P2)	District level	42	M	Coordination and supervision governance of cervical cancer screening in the district
Policymaker (P3)	District level	49	F	Coordination and supervision governance of cervical cancer screening in the district
Cervical cancer expert (CCE1)	Private facility	46	M	Gynaecological oncologist
Cervical cancer expert (CCE2)	NGO	53	M	Previous country director with experience in cervical cancer screening projects
Cervical cancer expert (CCE3)	Public facility	44	M	Gynaecological oncologist
Gynecologist 1 (G1)	District hospital	40	M	Gynaecologist
Gynecologist 2 (G2)	Regional referral hospital	38	M	Gynaecologist
Gynecologist 3 (G3)	Health center IV	31	M	Gynaecologist
Gynecologist 4 (G4)	Private hospital partly funded by government	37	M	Gynaecologist
Gynecologist 5 (G5)	Health center IV	56	M	Gynaecologist
Gynecologist 6 (G6)	District hospital	49	M	Gynaecologist

Abbreviations: MoH Ministry of health, NCDs Non-communicable diseases, NGO Non-governmental organization, P Policymaker, CCE Cervical cancer expert, G Gynecologist, M Male, F Female

Burden of cervical cancer in Uganda

All participants agreed that cervical cancer poses a significant public health challenge in Uganda.

“[Cervical cancer] is the number one cancer killing women here in Uganda therefore it clearly needs attention. We want to eliminate it as a public health concern.” – P1.

The key factors that were mentioned for contributing to this high burden include low screening coverage, low HPV vaccine coverage among adolescent girls, early sexual activity and a high prevalence of unprotected sex with multiple partners. In addition, some noted increased vulnerability among sex workers, while others yet pointed out that women with high parity are at greater risk, which in light of Uganda’s high birth rate would make this a contributing factor. The country’s high HIV burden further exacerbates the issue. Participants agreed that the disease is most prevalent among women with HIV, particularly those not on antiretroviral therapy (ARVs).

Individual-level barriers to cervical cancer screening

Individual-level barriers to cervical cancer screening were predominantly highlighted by gynecologists, who pointed to low demand for screening services as a major factor contributing to persistently low coverage rates. They identified a range of personal and psychosocial barriers that hinder women’s engagement with screening, including limited knowledge and awareness of cervical cancer and its prevention, negative perceptions and fear associated with cancer, persistent myths and misconceptions, and low general health-seeking behavior. Additional barriers cited included discomfort with the screening procedure, concerns about privacy, and anxiety over the possibility of a positive diagnosis.

“It’s about the health-seeking behavior of people… some are shy, especially those who have not had children before, they have not really exposed their private parts to health workers. They feel really uncomfortable. And then those who have had children and have been to hospital, many of them have a fear of the instruments we use… They think it is something that is painful.” – G6.

One gynecologist highlighted that educating and empowering women to proactively seek screening is a critical step toward reducing the burden of cervical cancer. While awareness of screening is reported to be gradually improving, the gynecologists unanimously noted that significant knowledge gaps remain across communities, underscoring the need for sustained and targeted health education efforts.

These findings are summarized in Fig. 2, which illustrates how individual-level and structural- and health-system-level barriers interact to drive low screening coverage and contribute to the high burden of cervical cancer in Uganda.

Fig. 2.

Multilevel barriers to cervical cancer screening coverage in Uganda, based on interviews with policymakers, cervical cancer experts, and gynecologists conducted between March 2022 and March 2023. Note: WHO’s building blocks of health systems were used to structure the structural- and health-system-level barriers, including service delivery, health workforce, information systems, leadership/governance, financing, access to medicines and technologies [19]. Abbreviations: VIA = visual inspection with acetic acid; IPs = implementing partners; CCS = cervical cancer screening, HPV = human papillomavirus; DNA = deoxyribonucleic acid

Structural- and health-system-level barriers to cervical cancer screening

Service delivery

Accessibility

Participants consistently reported that cervical cancer screening services in Uganda are primarily available in larger hospitals, health center IVs, and a limited number of health center IIIs. Many highlighted physical access, particularly long distances to available sites, as a significant barrier to uptake. Resource constraints and uneven implementation were also frequently mentioned, with participants pointing to both geographical disparities across districts and vertical gaps across levels of the health system. One noted that some districts had not yet initiated any screening activities.

Rural women face particular obstacles, including high transportation costs and financial dependence on male partners. Many husbands are reportedly unwilling to support travel for care, especially given the asymptomatic nature of cervical cancer in its early stages.

“It’s seen as a disease of the poor. Wealthy individuals seek treatment abroad, while the poor remain here, suffering. They don’t get screened in time, and when they do, they struggle to access treatment.” – CCE2.

Comprehensiveness

Participants noted that VIA remains the primary screening method in peripheral health facilities. While cytology is available at national referral hospitals, the process of transporting samples is often costly and unreliable. As a result, most centers rely on VIA combined with cryotherapy or thermocoagulation in a ‘see-and-treat’ approach. One gynecologist explained that they use VIA in public facilities due to limited resources, while they perform pap smears when working in the private facility.

More advanced screening methods, including colposcopy, are only available in higher-level institutions. HPV DNA testing is available at the Uganda Cancer Institute and Kawempe National Referral Hospital, and is reportedly gradually being adopted in other health facilities. According to a policymaker, these tests are processed using GeneXpert machines originally introduced for tuberculosis diagnosis, now present in some regional referral hospitals, general hospitals, and health center IVs. However, a district-level gynecologist noted that HPV DNA testing is typically accessible only when supported by implementing partners.

Treatment availability also varies by facility. Cryotherapy and thermocoagulation are offered at the district level, although equipment breakdowns are common. Loop electrosurgical excision procedures (LEEP) can be performed at regional referral hospitals, while radiotherapy and chemotherapy are provided at the Uganda Cancer Institute. Hysterectomies may be conducted at the district level where gynecologists are available.

Coordination

Participants explained that while the MoH oversees referral hospitals, district health authorities manage general hospitals, as well as health center IVs and IIIs. These health districts often rely on implementing partners, such as the Makerere University Walter Reed Program (MUWRP), Mildmay Uganda, Marie Stopes Uganda, and Reproductive Health Uganda, to conduct cervical cancer screenings. One participant characterized this model as a public-private partnership between the MoH and implementing partners. Several other organizations were identified as active contributors to screening efforts, including Baylor, the Infectious Diseases Institute (IDI) Uganda, Public Health Laboratories, and Makerere University Johns Hopkins University (MUJHU). International stakeholders such as PEPFAR, USAID, and PATH were also mentioned as key actors.

Implementing partners were said to play a central role in driving screening efforts, particularly due to their access to funding. Their contributions extend beyond service delivery and include the training of healthcare providers, support for data collection and management, and the provision and improvement of supplies and equipment necessary for cervical cancer screening. One participant emphasized that these organizations often coordinate activities at the grassroots level and serve as a crucial link between local services and the Uganda Cancer Institute.

Coverage

All participants agreed that cervical cancer screening coverage remains low.

“It’s very low, it’s really low. … We are really doing badly, and this is translated into the numbers of women who are coming to the Uganda Cancer Institute with advanced disease because the screening is hardly there.” - CCE3.

Estimates of screening coverage varied among participants, ranging from approximately 10% to 25%. Several noted that coverage is improving gradually, with one attributing anticipated growth to the ongoing expansion of services to regional and district hospitals.

Participants also highlighted disparities in screening coverage. One expert noted that women who are more educated and informed are more likely to access screening services. Moreover, the majority of participants observed that cervical cancer is perceived as a ‘disease of the poor,’ with higher screening coverage among elites, individuals with private insurance, and those accessing care through private hospitals. Several participants specifically mentioned that screening coverage is higher among HIV-positive women.

Although many participants acknowledged the potential benefits of integrating cervical cancer services into HIV care, several expressed concern that screening efforts are overly concentrated on HIV-positive populations. This focus is often driven by implementing partners whose programs are primarily oriented toward HIV.

“I wouldn’t say that the approach is bad, the only disadvantage with it is that people tend to focus only on the people who are HIV positive and yet we even have cervical cancer among non-HIV infected individuals. So, it would be better if we had a clinic of its own not necessarily attached to HIV infected people.” – P2.

“I think the implementing partner still highly restricts the screening towards an area of interest and that is HIV. You find that a lot of efforts are geared towards the women who are HIV positive, where does it leave the women in the general population, it is a very big question there.” – G4.

Some experts also reported that past efforts to integrate cervical cancer screening into HIV clinics have been unsuccessful. One participant shared a case illustrating how even long-term HIV care patients can be diagnosed with advanced cervical cancer, underscoring gaps in the integration strategy:

“…this woman who is getting HIV care, she tells you she has been on HIV care for 10 years and then she comes to you with advanced cervical cancer, and the reason why she has that cancer is because no one has bothered to look there, at the time when it is symptomless. If this mother had been screened, we would have got this cervical cancer at an early stage and managed. And we are finding so many of these mothers come with advanced cervical cancer, they are HIV positive and they are adhering to their drugs.” – CCE1.

Continuity

A major challenge identified by several participants is patient follow-up, with many women becoming lost in the system. Although a referral structure exists, it is often described as weak and passive. An additional barrier is the requirement for a histologically confirmed diagnosis before patients can access treatment at the Uganda Cancer Institute. Given that few facilities are equipped to provide histological confirmation, this remains a critical bottleneck in the continuum of care.

Concerns were raised about the sustainability of the approach of involving implementing partners. Once implementing partners achieve their programmatic targets and conclude their activities, districts are often left to seek new partnerships to continue service delivery, resulting in potential interruptions and inconsistencies in screening efforts.

In addition, it was noted that while antenatal and postnatal clinics are intended to provide cervical cancer screening, they often lack the necessary equipment. As a result, the responsibility for screening frequently shifts to family planning clinics. Several participants emphasized that these clinics serve as important entry points for raising awareness and encouraging screening, often supported by implementing partners. However, challenges such as overcrowding and long wait times can discourage women from accessing services.

“The integration aspect is very important and would be very fine. Unfortunately, sometimes you find these areas crowded, […] we have family planning in this small room, and it is the same area where people are coming for cervical cancer screening. […] So, it has an advantage, yes, we use the limited resources we have, but in the long run, it comes with the pressure which is prohibitive to the clients’ attendance at times.” – G3.

Participants urged the need for dedicated spaces for cervical cancer screening, separate from areas used for antenatal care or deliveries, to avoid service competition. They also noted that in many public hospitals, attention and resources are disproportionately focused on emergency services, leaving preventive services like screening under-prioritized.

Quality

Several participants described cervical cancer screening programs as disorganized and inefficient, noting that logistical systems remain underdeveloped, either unavailable or poorly managed.

“Even when screening is done, results take too long, especially in upcountry stations. You’re told two to four weeks, but sometimes it can take three months or the sample is lost entirely. Women make trips back and forth to the hospital trying to trace their sample, but it is not found. Depending on where she is in terms of stage of the disease, she may try to forget. So, the services are extremely limited, very limited.” – CCE2.

Finally, despite these challenges, some participants expressed optimism. They cited recent government efforts to scale up screening services at regional and district levels, along with ongoing support from implementing partners to strengthen capacity and expand community outreach.

Health workforce

A shortage of human resources, particularly trained personnel, emerged as a key barrier to cervical cancer screening, as identified by the majority of participants. It was noted that screening is primarily conducted by midwives. One participant emphasized the shortage of nurses and midwives on the ground:

“All our activities are standing on one backbone: human resource. You can have the best machines, best buildings, but if there are no human beings trained in those areas then they won’t be of use.” – CCE3.

However, perspectives on workforce sufficiency varied. A district-level policymaker did not view human resources as a major constraint, crediting implementing partners for building the capacity of existing staff.

“[Cervical cancer screening] is done by the implementing partners. For us, we give in the health workers and they build their capacity so I think with capacity we do not have issues. We have very well-trained health workers who are able to do it.” – P3.

Similarly, one gynecologist stated that Uganda has a generally adequate health workforce and that cervical cancer screening does not require highly technical skills, arguing that basic training should suffice. Others noted, however, that even trained staff are often overburdened with multiple responsibilities, limiting their ability to focus on screening.

Despite differing views on general workforce sufficiency, participants consistently acknowledged a critical shortage of specialized professionals, particularly oncologists and pathologists. While gynecologists are typically present at district-level general hospitals, oncologists and pathologists are mostly concentrated in regional or national referral hospitals.

“The gynecologist is very fundamental in this exercise, but they may not work in isolation, without the oncologist. So the gynecologist is also required, but given our radius which the hospital serves, I would confidently say that we don’t have an oncologist within this radius.” – G2.

In addition to availability, participants highlighted challenges related to staff motivation and technical confidence, especially concerning the see-and-treat approach. Some health workers, particularly nurses and midwives, reportedly lack sufficient knowledge about cervical cancer and are disincentivized by the low financial returns associated with screening. As a result, they often choose to work in labor wards, which offer higher perceived value. A similar lack of engagement was noted among laboratory technologists, contributing to delays or negligence in sample processing.

“The acetic acid might be there. We have taught our nurses how to mix the right percentages, but they sometimes do not do it rightly. They can mix a wrong concentration of acetic acid.” – P1.

Nevertheless, other participants pointed to the potential of VIA to empower nurses and midwives to deliver screening services effectively, provided they receive adequate training. Mentorship programs were cited as a promising strategy to enhance service quality, support task shifting, and promote the decentralization of cervical cancer screening to lower-level facilities and communities.

Information systems

According to the majority of participants, health information systems are in place in Uganda, incorporating both electronic and paper-based records. One participant noted the existence of a dedicated “data department” that collects data from health sites on a monthly basis, with additional support provided by implementing partners. However, despite these systems, participants reported persistent challenges in data reliability.

“We were trying to document the burden and it was very difficult to do that, so we had to go to hospitals and basically look for local data about cervical cancer cases they had seen in the communities and that is all that we actually relied on.” – CCE2.

Participants pointed to the limited reach of cancer registries, which are confined to specific catchment areas. This restricts the ability to compare cervical cancer burden across districts or on a national scale. Public health surveillance efforts are also hampered by the lack of comprehensive national data. As one participant explained, even the Global Cancer Observatory lacks adequate data on Uganda, in part because “Uganda does not prioritize information sharing.”

Leadership and governance

Policy formulation

Participants described a consultative process in the development of cervical cancer-related policies in Uganda. The MoH NCD department reportedly engages a broad range of stakeholders, including the Clinton Health Access Initiative (CHAI), the WHO, regional and general hospitals, health center IVs, and academic institutions such as Makerere University. Experts confirmed that both health professionals and researchers are actively involved in shaping national guidelines.

One gynecologist noted that public health facilities do provide feedback through periodic reports aimed at informing policy; however, these channels rarely highlight cervical cancer-specific concerns independently. Another participant affirmed the existence of a feedback platform, but noted that more urgent issues often dominate attention and policy discussions.

Screening policies

Participants expressed mixed awareness of Uganda’s formal cervical cancer screening policies. While some experts demonstrated familiarity with national efforts, gynecologists noted limited dissemination of relevant guidelines at the service delivery level.

“The policy guidelines, I would say they exist, but knowledge about the existence of those guidelines for now is limited and I would bet that several facilities don’t have them. So if at all we would consider a little more investing to have these policies and standard operating procedures present and known to the people who are giving the service it would be somehow better in service delivery.” – G2.

Another participant described a policy-implementation gap, highlighting that while information exists, the scale of practical application remains limited:

“[…] there is no information gap, but when you look at the implementation, the scale of implementation is still very low despite the guidelines being available. So the implementation for cervical cancer screening at public, and not even just public, but even private facilities is still very low.” – G1.

In terms of policy content, one expert referred to the “screen-and-treat” approach but did not cite a specific policy document. Another participant noted having contributed to the ‘2013 Comprehensive Strategic Plan,’ though was uncertain whether it had since been updated. A third described Uganda’s screening policy as strong and robust, noting its integration into antenatal, postnatal, and family planning services.

Additionally, a new policy is reportedly under development, based on WHO guidelines.

“The policy is being formulated, I don’t think it is out by now, the last time I checked, they were formulating a policy. We were adapting: so far, we are using the WHO guidelines, the only difference is one, we are starting at 25 years and when it comes to HIV positive women, I think we adapted to screening every 3 years, that is what we are adapting.” – CCE1.

Most participants agreed that Uganda’s national guidelines are generally aligned with WHO recommendations, though adapted to the country’s resource-constrained context. In addition to WHO guidelines, experts also referenced standards from the National Cancer Care Alliance, the U.S. National Cancer Institute, and the American Society of Gynecology. The MoH policymaker affirmed that HPV DNA testing is the preferred screening method, where feasible.

Health financing

All participants agreed on the need for increased government investment in cervical cancer screening services. A common concern was that the current underperformance of screening programs is largely attributable to inadequate funding from the government. One participant estimated that approximately 70% of cervical cancer services are currently financed by implementing partners, with only 30% supported by domestic government funds. This reliance on external actors was said to contribute to service inequities, as implementing partners are not present in all districts.

“If the government is investing in cervical cancer screening, it means that even districts without implementing partners will benefit because government programs normally ensure that there is equity at all levels.” - P2.

Participants also highlighted how competing priorities, such as maternal health and infectious diseases, continue to overshadow cervical cancer on the national agenda. One policymaker attributed this prioritization gap to a lack of awareness among decision-makers regarding the burden of cervical cancer:

“I think the issue is information because even those who are responsible for dividing the ritual cake may not be aware of how big the problem is. So it is our duty to sensitize the people, the parliamentarians and other policymakers, because they might not have the information that they need to prioritize these cancers, these non-communicable diseases. We are trying advocacy with the relevant authorities, they may not be aware because when they talk about how much we spend on cancer, they say we are giving this much to Uganda Cancer Institute yet Uganda Cancer Institute will not be the ones to go and screen this woman.” - P1.

Despite these funding challenges, one participant noted a positive development in the government’s establishment of a dedicated department for NCDs, including cervical cancer. This institutional development was seen as an encouraging sign of growing political interest in addressing cervical cancer and other NCDs in the country.

Access to medicines and technologies

A lack of adequate equipment and infrastructure, both diagnostic and therapeutic, was identified as a major barrier to the implementation of cervical cancer screening services in Uganda. Participants noted recurring issues related to procurement, maintenance, and availability of essential technologies. Stock-outs were also reported at various levels of the health system.

“Sometimes the thermocoagulator may not have the nitrogen or the thermocoagulator may be down.” – G3.

“Right now, apparently, I don’t have acetic acid in the department… For the last six months, you put a requisition for acetic acid and it is not there. And how much does it cost? Very little money. So that is where the problem now comes in. You want to do the work, but your hands are tied.” – G5.

Exploring alternative screening approaches

Opinions on self-sampling

Policymakers, cervical cancer experts, and gynecologists expressed largely positive opinions about self-sampling for cervical cancer screening. Most highlighted the convenience and privacy it offers, especially in comparison to conventional, more invasive screening methods. Participants emphasized that self-sampling could increase women’s confidence and address barriers such as embarrassment or discomfort. One expert shared experiences from a pilot project, where women appreciated the autonomy the method provided.

“When we talked to most of the women, they were not comfortable with a provider encroaching on their privacy, so most of them were actually very happy and excited about doing it themselves.” - CCE2.

Despite these advantages, participants identified several challenges to the widespread adoption of self-sampling. Policymakers raised concerns about limited health literacy, suggesting that some women might have difficulty following instructions, fear inserting the sampling brush incorrectly, or be uncomfortable touching their own genitals. Experts and gynecologists further stressed the need for clear, culturally appropriate instructions to minimize doubts about test accuracy and reduce fears of self-harm. Additionally, some participants highlighted apprehension surrounding HPV-positive results, particularly due to common misconceptions that an HPV infection inevitably leads to cancer.

Practical and logistical concerns were also raised, including uncertainty around the availability of reagents for sample analysis and a lack of clarity on which entities would be responsible for processing samples and following up on results.

Despite these challenges, all participants agreed that self-sampling has strong potential for acceptability in Uganda. Many believed it could substantially expand coverage by reaching women who would otherwise avoid screening, particularly those facing cultural or logistical barriers to provider-based methods.

Opinions on offering self-sampling in communities

All stakeholder groups recognized the potential advantages of offering self-sampling within communities as opposed to in (high-level) health facilities. Lower transport costs and improved accessibility were key benefits. One gynecologist highlighted that a community-based approach would be more effective in reaching women who are not currently seeking care.

“The majority of the people who need to be screened for cervical cancer are not patients, these are people. They are in the market selling their merchandise, they are the people who need to be screened for cervical cancer. By the time you wait for someone who comes with an abnormal discharge or with post-coital bleeding, who comes with a lesion then, you’re already late so the majority of the clients who need to be screened are not sick so a community based approach is the magic.” – G1.

Some participants believed that women would feel more confident using a self-sampling kit if it were distributed by trusted Village Health Teams (VHTs). However, others expressed concerns about trust and acceptability in community-based delivery. A lack of confidence in individuals who are not formally recognized health professionals was identified as a potential barrier to uptake in these settings.

“Things to do with health, our communities trust health workers. So now who is going there to do the testing, they will ask, ‘Are you a musawo [the word for doctor, nurse or health worker]?’. Who takes it there? Because if you are not a musawo, they may not really trust you. So that could be another challenge.” – P1.

Most participants emphasized the importance of ensuring women are adequately informed and sensitized to the procedure. One participant anticipated fear or misconceptions about the self-sampling brush itself:

“Aren’t these people want to stop me from having children?” – G3.

One policymaker and one gynecologist expressed concern that home- or community-based self-sampling might result in missed opportunities for other health checks, such as blood pressure screening or the identification of genital infections, which are typically conducted in healthcare facilities.

Technical and logistical challenges were also noted. These included the need for continuous guidance, reliable storage and transport of samples in rural areas, and infrastructure for local result interpretation. Suggestions were made to enable result analysis at the community level to enhance feasibility and reduce delays compared to facility-based models.

Opinions on the long-term sustainability of community-based self-sampling were mixed. Some believed it may only be viable for pilot studies, citing concerns about the government’s capacity to distribute kits nationwide. They suggested limiting self-sampling to health facilities under formal programmatic guidelines. Others argued for integrating it into community services, provided it is supported by strong health education efforts. Additional benefits noted included reducing patient loads at health facilities and improving access.

“One: the numbers you will screen are likely to be higher compared to the facility-based strategy. Two: you’re not congesting the hospitals, you’re giving the hospitals chance to deal with conditions that cannot be handled in the community. You’re bringing the services to the community so the people find it very easy to access and the cost of the service becomes low.” – G1.

Remaining concerns included unclear responsibilities for result interpretation, device maintenance, and follow-up care in decentralized settings.

Finally, participants discussed the potential integration of self-sampling into national health programs. They stressed the importance of engaging health workers, community leaders, and political stakeholders in the implementation process. One policymaker highlighted the need to link community-based screening data to national health information systems, possibly through VHTs. While integration poses logistical challenges, many experts and gynecologists believed that if the method proves cost-effective, it could gain policy support. However, competing health priorities may influence funding decisions and the scalability of this approach.

Table 2 presents a synthesis of the main findings across all analytical domains, along with corresponding recommendations and overarching conclusions.

Table 2.

Main findings, recommendations, and conclusions on individual and structural- and health-system barriers to cervical cancer screening in Uganda, based on interviews with policymakers, cervical cancer experts and gynecologists conducted between March 2022 and March 2023

Topic		Main finding	Recommendation	Conclusion
Burden		High due to low screening coverage		Urgent public health priority
Individual barriers		Low demand caused by fear, misconceptions, low awareness	Sustained, targeted health education	Education is key to uptake
Structural- and health-system barriers	Access	Services concentrated in higher-level facilities	Expand to lower-level and rural facilities	Broader geographic reach needed
	Coordination	Reliance on (often short-term) donor programs	Build sustainable national models	Reduce donor dependency
	Coverage	Focus on HIV-positive women	Broaden screening opportunities to all eligible women	Avoid inequities
	Integration	Resource competition in reproductive health services	Provide dedicated spaces and resources	Integration needs adequate capacity
	Workforce	Low motivation, specialist shortages	Mentorship & task-shifting support	Workforce capacity is critical
	Information systems	Weak data reliability and registry reach	Strengthen data and registry systems	Reliable data is essential for public health surveillance
	Financing	Donor reliance, competing priorities	Increase domestic investment	Sustainable financing is key
Self-sampling		High acceptability, privacy benefits	Provide clear instructions and education	Can boost coverage
Community-based self-sampling		Improves access, logistical concerns	Ensure guidance, infrastructure for local result interpretation	Promising if well-supported

Discussion

This study highlights persistent challenges in the implementation of cervical cancer screening in Uganda, despite national policy frameworks and significant contributions from implementing partners. While decentralization is a national goal, screening services remain largely concentrated at higher-level facilities, leaving many lower-level centers and districts underserved. This uneven distribution contributes to persistent inequities in access and low overall coverage, which are consistent with the high burden of cervical cancer reported in the country. However, the true scale of this burden remains uncertain, as comprehensive and up-to-date national data are lacking, underscoring the need for stronger surveillance systems.

At the individual level, low demand emerged as a major barrier. Limited knowledge, fear, and persistent misconceptions discourage women from seeking screening, reflecting broader patterns also observed in other low-resource settings where psychosocial and cultural factors strongly influence health-seeking behavior [11]. These findings indicate that expanding screening coverage will require not only improving service availability but also delivering targeted, sustained health education to empower women and address concerns about screening procedures and potential diagnoses.

On the supply side, cervical cancer screening in Uganda is constrained by systemic limitations in service delivery, access to essential supplies, and health workforce. VIA remains the primary screening method at peripheral facilities, reflecting both resource limitations and missed opportunities to scale up HPV DNA testing. Additional logistical barriers, including equipment breakdowns, reagent stockouts, weak laboratory systems, and gaps in patient follow-up further hinder the quality and continuity of screening services. While some policymakers considered human resources as generally adequate, largely due to the capacity-building efforts of implementing partners, clinicians highlighted persistent workforce-related challenges, including shortages of trained staff, competing responsibilities, and uneven distribution of specialists such as oncologists and pathologists. Task-shifting to nurses and midwives, supported by mentorship, was considered promising for expanding coverage but requires sustained investment and institutional support.

Integration of cervical cancer screening into HIV and reproductive health services was viewed as a double-edged sword. While it offers a practical entry point for service delivery, the donor-driven focus on HIV-positive women risks excluding the broader female population. Similar patterns have been observed in other sub-Saharan African countries, where women living with HIV are more likely to be screened than women without HIV [22]. Furthermore, screening within antenatal and family planning clinics is often hampered by overcrowding, lack of equipment, and competition for space, undermining the potential benefits of integration. Comparable concerns have been reported in Mozambique, where integration without adequate resources has compromised the quality of cervical cancer services [23]. International experience indicates that successful integration requires adequate infrastructure, staffing, and logistical support across the care continuum [24].

A key structural challenge identified in this study was Uganda’s heavy reliance on international implementing partners. While these actors have played a critical role in training, service provision, and innovation, their often short-term involvement poses risks to both continuity and equity. Participants stressed the need for increased domestic financing and stronger government leadership to ensure screening services are sustainably embedded within the national health system. Similar calls for reduced donor dependency have been made in regional policy dialogues, particularly as global HIV funding declines, and comparable patterns have been reported in other countries, including Tanzania [25, 26].

This study found that gaps in dissemination and implementation of cervical cancer policies persist, despite general alignment with WHO recommendations. The lapse of the National Cervical Cancer Prevention and Control Strategic Plan (2018–2023) without a public update raises concerns about prioritization and governance, particularly given Uganda’s competing health demands. Maintaining a dedicated cervical cancer policy is essential for keeping the issue high on the national agenda and ensuring sustained commitment from both government actors and frontline health workers [27].

Community-based self-sampling emerged as a highly promising strategy to tackle both demand- and supply-side barriers. Most participants underscored its acceptability, enhanced privacy, and potential to reach women who rarely engage with the health system. These findings are consistent with previous research, which reported positive perceptions about self-sampling approaches in communities in rural Uganda [28]. Similarly, initiatives in countries such as Malawi have shown high levels of user satisfaction and high screening uptake in community-based HPV self-sampling models [29]. However, participants in our study expressed valid concerns about women’s confidence in correctly performing the test, the interpretation of results, and the logistical feasibility of managing sample transport, storage, and result delivery. Such challenges are relevant to many low-resource settings and reinforce WHO’s call for validated point-of-care HPV testing technologies, which could enable a screen-and-treat approach [30].

While some stakeholders considered community-based self-sampling suitable only for short-term pilots, others supported its integration into national screening programs, provided that adequate funding, health worker and community leader engagement, and policy alignment are ensured. Several experts and gynecologists in our study noted that proving cost-effectiveness could be key to gaining policy support for community-based self-sampling. Economic evaluations from Kenya indicate that HPV-based cervical cancer screening through community health campaigns can reduce the cost per woman screened compared to clinic-based approaches [31]. In Uganda, a pilot initiative showed that community-based self-sampling was both effective and highly cost-effective versus clinic-based collection [32]. Nevertheless, the overall evidence on the cost-effectiveness of community-delivered strategies remains limited, particularly across diverse implementation contexts [33]. Successful implementation would also require strong health education efforts to address misconceptions about the self-sampling brush and to build trust, particularly when screening is offered by individuals other than recognized health workers.

This study has several limitations. Only one female participant was included, potentially limiting the diversity of gendered perspectives. Given that cervical cancer primarily affects women and that midwives are often at the forefront of screening services, future studies should include more female health professionals whose frontline experiences could offer valuable insights. Most gynecologists and cancer experts in our sample were based in urban or peri-urban areas, which may not reflect the realities in remote regions. In addition, while the Social Ecological Model is often used to map barriers across multiple levels, this study primarily captured individual-level barriers (identified by gynecologists) and structural or health-system-level barriers (identified by other stakeholders). Interpersonal and community-level barriers were less represented. Finally, the potential for social desirability bias must be acknowledged, given the interviewer’s affiliation with a self-sampling project, although many participants had direct experience with self-sampling, grounding their responses in practice rather than speculation.

Conclusions

In the coming decade, Uganda will see a significant increase in the number of middle-aged women, a generation that has not benefited from HPV vaccination. This growing cohort will place additional pressure on an already constrained health system. The barriers identified in this study demonstrate that the current infrastructure is not yet prepared to meet either the existing or the anticipated demand for screening and follow-up care. Sustainable national investment, rather than reliance on external donors, will be essential to strengthen health system capacity, particularly in light of uncertainties around international aid.

To address these challenges efficiently, Uganda must prioritize the roll-out of primary HPV-based screening and consider innovative, context-appropriate strategies such as community-based self-sampling, supported by robust health education. Together, these approaches can help expand equitable access to prevention services and position Uganda to make meaningful progress toward WHO’s cervical cancer elimination targets.

Abbreviations

AIDS

Acquired immune deficiency syndrome

ARVs

Antiretroviral therapy

CCE

Cervical cancer expert

CHAI

Clinton Health Access Initiative

COREQ

Consolidated criteria for reporting qualitative research

DNA

Deoxyribonucleic acid

G

Gynecologist

HIV

Human immunodeficiency virus

HPV

Human papillomavirus

IDI

Infectious Diseases Institute

LEEP

Loop electrosurgical excision procedure

LMICs

Low- and middle-income countries

MoH

Ministry of Health

MUJHU

Makerere University Johns Hopkins University

MUWRP

Makerere University Walter Reed Program

NCDs

Non-communicable diseases

P

Policymaker

PATH

Program for Appropriate Technology in Health

PEPFAR

U.S. President’s Emergency Plan for AIDS Relief

SSIs

Semi-structured interviews

USAID

United States Agency for International Development

UVRI

Uganda Virus Research Institute

VIA

Visual inspection with acetic acid

VHTs

Village Health Teams

WHO

World Health Organization

Authors’ contributions

H.V. and E.D.P were responsible for the conceptualization and core methodology of the study, in collaboration with A.S., who led the adaptation of the study design to the Ugandan context. Data collection and transcription of interviews were conducted under the supervision of G.N. Coding, formal data analysis, and interpretation were carried out by E.D.P. and G.N. E.D.P. drafted the manuscript and designed the figures. Supervision was provided by H.V., A.S., and O.D. All authors reviewed, revised, and approved the final manuscript.

Funding

This work was performed in the frame of the project “A Community-based HPV Screening Implementation in Low- and Middle-Income Countries” (CHILI) which has received funding from the European Union’s Horizon 2020 Research and Innovation program under Grant Agreement No 964418.

Data availability

The dataset supporting the conclusions of this article are not publicly available due to participant confidentiality and a 5-year embargo period. All datasets will be deposited in a DANS Data Station (Data Archiving and Networked Services). After the embargo period, the dataset will be accessible via a persistent identifier (DOI) and available upon reasonable request to the repository. Until that time, the dataset can be obtained from the corresponding author on reasonable request and subject to ethical approval.

Declarations

Ethics approval and consent to participate

Ethical approval was obtained from the Uganda Virus Research Institute Research Ethics Committee (UVRI REC #874), the Uganda National Council for Science and Technology (UNCST SS #2167) and Ghent University Hospital Ethics Committee (ONZ-2022-0161). Participation in the study was voluntary. Written informed consent was obtained from all participants, and confidentiality was maintained through data anonymization.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.