“They tossed me up like a ball”: informal settlement residents’ experiences in accessing healthcare in Kampala, Uganda

Abstract

Background

Most urban dwellers (55%) in low- and middle-income countries (LMICs) live in informal settlements. Informal settlement dwellers have higher disease risk and poorer quality of life than residents of formal urban environments, yet they have less access to healthcare. Despite benefits of most international health aid delivered through Global Health Initiatives (GHIs) such as the WHO, USAID, and PEPFAR in rapidly addressing specific conditions such as HIV, TB, malaria, many GHI have created parallel structures to existing health systems. This paper examines the experiences residents of informal settlements have in trying to access basic healthcare in the context of global health aid.

Methods

In this community-based study, we conducted focus group interviews (FGI) among 165 residents of six purposively selected informal settlements in Kampala, Central Uganda. Participants were purposively sampled to reflect participant demographics such as gender and age, with separate groups for males, females, youth and refugees. FGI asked residents about settlement formation, community challenges, governmental and non-governmental responsiveness, and health service delivery. Interviews were audio-recorded, transcribed verbatim and translated as needed. Inductive and deductive coding were used to merge codes into a final codebook, identifying emergent sub-themes and overarching themes summarized with supporting quotes.

Results

Residents described barriers to accessing three separate healthcare systems: the public health system (national and regional referral hospitals and district health centers), the private health system, and the international donor healthcare system. Dimensions of affordability and approachability limited healthcare access in both the public and private systems, while most residents were excluded from disease-specific international donor funded care. The focus group interviews indicated that private healthcare systems have created incentives to draw resources away from already depleted public healthcare systems, further decreasing access to the most vulnerable.

Conclusions

Our study reveals important and substantial gaps in the current healthcare system in Uganda. The main perceived health system challenges were its affordability and ‘approachability’ among residents of informal settlements. GHIs drain resources from the national health system and neglect coverage for non-priority diseases. We call upon policymakers to re-prioritize and respond to these health system challenges.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-025-23643-x.

Introduction

Most urban dwellers (55%) in low- and middle-income countries (LMICs) live in informal settlements [1], sometimes called slum settlements. Informal settlements are houses constructed on land without formal legal claim or without prior planning approval. According to UN-HABITAT, informal settlements are identified as those that lack one of six criteria: access to improved sanitation; access to roads; access to utilities (water and electricity); sufficient living area; security of tenure; and durable housing [2]. In Sub-Saharan Africa (SSA), it is estimated that 70% of the urban population currently lives in informal settlements [3, 4]. Further, SSA is urbanizing at a faster rate than anywhere else in the world [5].

Although the health consequences of living in informal communities requires more attention, certain circumstances that contribute to poor health outcomes are clear: exposure to water-borne and other infectious diseases [6, 7] and greater incidence of non-infectious disease (particularly those caused by exposure to pollutants) [8–12]. Poor structural quality, such as damp housing, or homes located in hazardous areas can make informal settlement residents vulnerable to respiratory illnesses like tuberculosis (TB) or asthma, or injuries from landslides, earthquakes, or fires. The use of biofuels such as charcoal or wood can also contribute to asthma or the danger from fires [13]. Difficulties in policing and poor economic prospects can make crimes such as drug selling and community violence a problem for informal settlements [14].

In addition to being more vulnerable to ill health, residents of informal settlements are also among the most medically underserved, despite being located in urban settings [15]. Access to healthcare is a complex and multi-dimensional concept that encompasses both user needs, preferences, behaviors and abilities and system attributes such as distance, affordability, appropriateness and quality [16]. Despite the importance given to primary health care by the World Health Organization, United Nations and other development agencies, serious deficiencies remain, including poor quality services, high out-of-pocket expenditures, and drug stockouts particularly among the poorest and most vulnerable such as informal settlement residents [17–20]. Qualitative studies have shown that residents of informal settlements weigh cost, distance, convenience, and type of provider in deciding where to seek medical care [21]. Informal settlement residents are also more likely to spend more on health care than non-informal settlement dwellers, particularly for medicines [21], and to experience catastrophic health expenditures [22]. Other research has shown that informal settlement residents prefer formal providers, particularly those in public hospitals, over informal providers (those that are not state-authorized or registered) because they are perceived to be of higher quality [23]. These studies on healthcare access and decision making in informal settlements have focused on patient characteristics and less on healthcare system level dimensions of access.

Improving health for all through delivering primary healthcare has long been a goal of health and developmental organizations. While some indicators have improved over time, such as infant and maternal mortality or residential distance to the nearest health facility, primary health care systems in LMICs are still inadequate and vary widely in quality within and between regions [18, 24, 25]. Much international health aid delivered to LMICs has been disease focused. Global Health Initiatives (GHIs) such as the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), the President’s Emergency Plan for AIDS Relief (PEPFAR), and the World Health Organization (WHO) among others, have been instrumental in the rapid acceleration of programs targeting specific diseases such as HIV, TB, malaria, malnutrition and maternal and child health in LMICs. However, critics have pointed out that many of these initiatives created parallel health systems to those that were already established. This was in some ways necessary due to deficiencies in health resources, but over time, it contributed to further weakening of health systems by drawing health personnel away from the national system to the better paid positions in GHI funded clinics and projects [26]. At the same time, the focus on infectious diseases led to the relative neglect of non-communicable diseases such as cancer, mental health, substance use, diabetes, and cardiovascular disease, even as the global burden of such diseases create is growing [27, 28]. An equitable approach to prioritizing non-communicable diseases is warranted on economic and ethical grounds while also addressing infectious diseases in LMICs [27].

More recently, global health funding priorities have shifted to strengthening primary health care. However, challenges to providing local, high quality primary care remain, such as drug stockouts and staffing shortages [29]. In some cases, this has led not to an abandonment of disease-focused international donor spending, but to so called “diagonal” systems strengthening [30]. Diagonal funding is so called because it combines “vertical” or “top down” programming, as in many disease-focused GHIs, with more horizontal or community based needs assessments [31, 32]. Research evaluating primary health care has identified challenges including fragmentation of services, poor management and oversight, workforce training and retention, and issues of quality and affordability [19, 20, 33]; however, primary healthcare remains underfunded relative to funding for particular diseases [20]. Some interventions to strengthen primary health care have focused on processes such as strengthening and digitizing health records, which can help to accurately predict and respond to community health needs [17, 33]; greater empowerment of health system management at the district and facility level; increasing efficiency of primary health care; and engaging community in the design of curative and preventive health services [17]. Many other studies focus on measures of quality such as patient satisfaction with cost and care received [33].

This paper explores informal settlement residents’ experiences in accessing healthcare in Kampala, Uganda. We explore dimensions of affordability and approachability and aspects within three parallel healthcare systems: the public, private and international donor-funded systems. Policy implications of findings to improve healthcare access are discussed.

Methods

We conducted focus group interviews, i.e., a guided facilitated discussion with groups of residents [34] of 6 informal settlements in Kampala, Uganda (n = 165).

Kampala is Uganda’s capital city, located in central Uganda and whose overall administration is overseen by Kampala Capital City Authority (KCCA). KCCA actively manages its five administrative divisions, namely, Central, Nakawa, Makindye, Lubaga, and Kawempe which host 57 informal settlements that accommodate 31% of the urban population [35]. The study was conducted in 6 randomly selected informal settlements in Kampala (Bwaise, Kifumbira, Kinawataka, Naguru, Kisenyi and Namuwongo).

We purposively sampled focus group interview participants for diversity in gender, age, and tribal identity and held separate focus group interviews with male and female adults and youth and, in some settlements, refugees. We used a project-developed guide, provided as a supplemental file. In the focus groups interviews, we asked residents to describe how the settlement was formed and how they came to live there, their perceptions of the biggest problems facing the community in general and facing their children, and their perceptions of the responsiveness of government and non-governmental organizations in trying to address the problems or to force them to leave. We asked them to describe common health problems faced by residents and the best ways of providing health services to their community. Inclusion criteria were being 18 years or older, living in one of the informal settlements selected for study, and being able and willing to provide informed consent. All participants were assigned a number and referred to each other by that number in focus group interviews. Participants provided written informed consent.

A qualitative research team consisting of 4 Ugandan researchers were responsible for transcribing and translating interviews into English when interviews were conducted in Luganda. (Some key informant interviews were conducted in English.) The same team was responsible for coding and analysis; all translation, coding and analysis were conducted collaboratively, and discrepancies were resolved through discussion until consensus was reached. First, research assistants read and reread transcripts and each developed separate lists in a process of open coding. Codes then went through a process of merging, cleaning and collapsing code lists from different reviewers to develop a final codebook. After the codebook was finalized, the researchers attached codes to meaningful text units in focus group interview transcripts using qualitative analysis software MAXQDA. Items with similar meanings were collapsed into sub-themes and then sub-themes with similar meaning were collapsed into themes. Interpretation of the results was done, and findings were summarised using narratives, supported by verbatim quotes from the data. Participants are identified by number in quotes below.

Results

Results from this study show that people living in informal settlements have multiple barriers to healthcare access despite being disproportionately burdened by multiple diseases. For these participants, access barriers primarily concerned affordability and approachability dimensions. Affordability, as we will see below, includes financial, time and opportunity costs. There were also concerns about approachability (hours of operation, distance and difficulty navigating services). However, it is important to note the context in which this occurs. Uganda has been attempting to achieve universal healthcare coverage; however, the extent to which this has been achieved is modest and the public healthcare system has relatively fewer resources than international donor-funded (largely focused on GHIs) or private healthcare facilities. Participants also complained of a lack of essential medicines and other basic medical supplies and suspected that some of these were diverted to the private medical sector for profit. Drug stockouts and understaffing increase costs associated with seeking healthcare for informal settlement residents who are often asked to pay bribes by medical personnel or suffer significant time and opportunity costs.

Healthcare is unaffordable for those without GHI-supported diseases

Informal settlement residents described suffering from several common infectious diseases but complained that healthcare for common complaints was largely inaccessible. Focus group interview participants described problems with hygiene and standing water in their communities that cause many diseases, particularly among children. In addition to creating an environment in which parasitic, bacterial, and viral infections and their vectors thrive, the physical layout of informal settlements also makes it difficult to receive emergency healthcare, as the respondent below reports.

Number 7: “In this area, most of the diseases are a result of poor sanitation and hygiene. We all suffer from diarrhea, malaria, dysentery, and infections among children. When you look at this area all the water from the Makerere Hill comes here, the drainage is not good, water is stuck everywhere so the diseases are many. Here when someone gets sick, we can’t rush anywhere very fast, the only hospital that accommodates… is far from here. I can tell you that when you go to the national referral hospital, you will find a line of over 500 patients so you will be forced to walk away without treatment, especially if you have small issues like malaria. The people who are supposed to work on them just keep bypassing them.”

The primary barrier reported by participants was affordability. Public services that are supposed to be without service user fees required long periods of waiting in overwhelmed hospital facilities or traveling farther away to other facilities with costs incurred in transportation, travel time and, for some participants such as the woman below, time spent navigating an unfamiliar place. Private healthcare facilities were much less costly in terms of opportunities and time, but cost money that informal settlement residents did not have.

Interviewer: “Are the services affordable?”.

Number 6: “Oh, the hospitals are very expensive. For us who do not have money we can’t manage anymore in those hospitals that Number 7 talked about. The clinics are expensive, health care is hard in this community. If you did not set aside some money you do not bother going there. Most of us can’t afford the clinics so we stay at home. But when the condition gets worse, we go to [the National Referral Hospital] but the numbers there are overwhelming. When we go there, they send us to [name of facility] Health Center IV, which is not any different because that center serves many people as well, so things are hard for us. The other hospitals are far from us for example [name of health facility] where we are sent is far from us; personally, I have never been to [aforementioned health facility] since I was born, and I do not even know where the hospital is situated. We kindly request the government to let us access services from the national referral hospital. If it was sold or something else, we should be informed formally so that we know.

This participant is speaking of the difficulty in understanding or navigating the healthcare triage system. The referral hospital is intended for the most complicated or serious cases. Thus, it is understandable that they were directed away from the referral hospital to a lower-level health facility. However, the participant was referred instead to the next level of facility (Level IV) at the county level, which was also overwhelmed and happened to be a farther distance from this community.

A third option for participants is to visit international donor-funded healthcare facilities. Often these facilities are disease-specific, most commonly focusing on HIV and TB and funded by Global Health Initiatives to eradicate these epidemic diseases. These clinics are often patients’ medical homes and provide integrated medical treatment for all the patient’s needs; however, these healthcare services are not available to people without these specific diseases.

Number 1: “We have private clinics which attend to the patients quickly, then we only have one government health facility like the Health Centers. In addition, there is [name of medical center] which is owned by NGOs. Now these organizations like [aforementioned medical center] offer HIV/AIDS treatment to the people for free. They also test for TB and offer its treatment for free. However, the other health conditions are paid for. The rest of the health facilities except [government facilities and NGO facilities] one has to foot his own medical bills.”

Number 2: “Concerning [name of medical facility], it helps with one thing. They test you for HIV and if you are HIV positive, they will help. Only that, they will not help a pregnant woman, and others, because they are international. We have a midwife with a personal clinic around… She is now old. So, for now if you are to give birth, you go to KCCA [Kampala Capital City Authority], but is not free of charge. You may go to a private clinic, buy a polyethene Mackintosh at UGX. 1000, but when you get to the public health facility, it is UGX 5000 (between $0.25-$1.25) Those with money go to [public health facility]. Those without money, deliver from their home, whether the baby survives or not, only God knows.

The stockouts of essential medicines and basic health supplies within the medical system is another barrier to healthcare that will be explored below.

Approachability of healthcare facilities is also low

In addition to being overwhelmed by the number of cases, participants reported that public medical center staff only worked during normal daytime business hours, leaving health facilities understaffed or staffed by underqualified personnel.

Number 9: “The problem we have in [public health facility], during morning hours, day hours, the doctors are there, during evening, the doctors leave the premises at 4pm and leave these… we should call them students. They are the ones who come in at night, they are the ones available. So, you find that these students sometimes cannot handle issues like the doctors themselves, so you find that there is a problem. For me there is a time I was once working there, the woman died, she was pregnant, she really died pitifully.”

In addition to limited hours, approachability was limited due to the complexity and opacity of the healthcare and referral system. Participants reported that the national referral hospital and Health Center IV were difficult to navigate as people were sent from one specialist to another. Some participants reported hiring informal “navigators”, who were only sometimes employed by the health system, to help them access needed services.

Number 5: “The [referral hospital] if you do not have money, you are dead, because this hospital has very many brokers. You cannot get a health worker without going through a broker. You have to get a broker if you need an X-ray, and this person takes you somewhere outside the hospital and the person on the outside will do it and refer you through the broker to a health worker in the hospital, all this happening involves costs paid out to the person that has offered the service on the outside of the hospital and I think they share with this person who is on the inside.”

There was a feeling among some participants that this need to find a navigator to get the services one needs is a way of eliciting bribes to receive health services as the participant below describes.

Number 4: “The first thing is when my mother fell sick, I took her to [the referral hospital] and they tossed me up like a ball. They send you to different places to be helped there and I ended up coming back here and bought the medicine from a clinic because they had not provided me with any service, not even prescribing any medication for me in the government facility. So, my problem is that the government facilities no longer care about ordinary people. They only want money but also, they cannot openly tell you that they want money, they just toss you around until you get tired and leave. To me the government services are not good.”

Again, ways of increasing access, this time by increasing approachability, often required more costs (time waiting or money to cut the line).

Stockouts of essential medicines and medical supplies

Participants mentioned that their settlements contained several small drug shops that people sometimes used for healthcare when they could not afford to go to a private clinic, or the public clinic was far away.

Number 6: The health facilities that we have in this community, none of them is owned by the government. In our community… we have privately owned health facilities which are at the same time very expensive. A facility that we have is [name of private facility], but it is expensive. We have [name of other private facility] up that side but is also expensive. The other facilities that we consider here in our community as low-income earners are the small clinics [drug shops] that sell to us Panadol, yet at the same time these drug shops are established by business minded people who even never went to school to learn dispensing of drugs but probably have acquired experience from somewhere.”

This participant implies that owners of these drugstores are not qualified to give medical advice.

Since medications from privately owned drug stores are not subsidized, such medications are also out of reach for many informal settlement residents who may end up not taking the full course of medication, leading to infection resistant diseases.

Number 9: “The other thing is that most people get the medication from the drugs shops like we said if someone has gone to the KCCA facility and are diagnosed with typhoid, which the medication is expensive, so they come and buy lower dosages based on the money they have so they may have medication of say one week and if they get some relief, they give up on the rest of the medication which results in so many deaths because people have that mentality especially when they feel better they do not have to go buy the rest of the dosage thinking they are okay and also in most cases the drugs in our drug shops are sometimes expired, so there are quite many issues.”

Even participants who managed to be seen by providers reported frequently buying medications from private clinics as there were drug stockouts at the pharmacies of public hospitals.

Number 4: “You can go to the hospital and end up not getting the medicine; rather they just make you to sit there. They just get blood samples and write for you a note and if you go there in the morning you may end up coming back like at 2pm without being given any medicine. They just tell you to go and buy the medicine from somewhere else, yet you have been there for the entire day. They tell us that the government buys the medicine, but we do not know where it goes. The health workers really mistreat us.”

Number 6: “And where they tell you to go and buy the medicine for instance pharmacies, the medicine costs a lot of money. Then you wonder as to why you went and spent a whole day at the hospital then in the end, they tell you that the medicine is not there.”

Even in cases where participants viewed the quality of the services to be high, like the woman below, they were still required to buy medications due to stockouts in the health facilities.

Number 4: “When you look, here we are okay. Imagine people in [Healthcare facility III] are referred to [national referral hospital] which is just here. Much as they do not have the drugs at least you see good doctors for the right diagnosis. Me, I had a child who spent half a year in [national referral hospital] but the services were really good. They would give us food. They would only send us for some drugs that were not in stock. So even if you go to private, when they fail, they will refer you to Mulago. I would rather line up in a government facility. It’s much cheaper. One time, I fell sick and went to a private clinic…and was charged UGX 50,000 shillings just to see a doctor while [public health care center], yes, I would line up, but that UGX 50,000 is spared to buy drugs.

In this case, the woman reasoned that the money she saved from not paying to be seen in public hospitals could offset the costs of medicines if they were not in stock. However, it must be noted that she was likely not talking about primary healthcare at that point, as she describes her daughter being admitted for some time.

Some participants suggested that the drug stockouts were a pretext to get participants to pay bribes or to spend money in private pharmacies that doctors own as side businesses.

Number 5: “Most doctors have opened their own businesses outside. For instance, most of the doctors in [private healthcare facility] have pharmacy businesses. When you go there, even if the medicine is available, he will not give it to you. Rather, he writes for you a note and directs you to a specific pharmacy that they have the medicine. For you, you will think that you have gone to somebody else’s pharmacy, yet it is for that very doctor.

Some participants saw such practices as corruption, while others reasoned that it was only fair that doctors who earned very little have a way of earning extra money.

Number 4: “You cannot take away a doctor’s side business without paying them enough. They will end up not turning up for their duties, yet you need doctors in the hospitals. So, if you say that whoever found with a business you terminate their performing license you as a government give them enough money this will make them honest on their jobs this will work for the people and the government.”

Others suggested that the drug stockouts were also caused by corruption, as people were able to steal drugs from the hospital that were supposed to be given for free to sell them in private pharmacies.

Number 6: “The whole country, we have a lot of drugs. Those drugs need security because the drugs are brought in and the following day, they disappear and you find that some have been found somewhere there, then you wonder as if they developed legs so that means, there is no security of drugs in the hospitals all over…Say for example they stock drugs in one week then another month you go and cross check, they do not even have inspectors. You see we need inspectors of drugs in the hospitals. That means the government will continue buying drugs and some people will be taking it away.”

Informal settlement residents had strong reasons for suspecting that drug stockouts were a symptom of corruption as many reported being asked for bribes by doctors and other health personnel while seeking services. In the case below, the woman describes being asked for money for medication that was clearly available in the hospital.

Number 6: “It is not easy to deal with these challenges. In the case of the delivery, because we have many women in the area, sometimes giving birth is difficult. There are no resources or supplies required for this [available in the facilities]. The government has them but there is no one to follow up on this. Drugs are there, but they are sold to us. Polyethene mackintoshes are there but you pay for them. For me I delivered my first born from there, but the ‘musawo’ (medical person) told me “Bring money. We [will] send for drugs from [neighborhood]. Bring fifty thousand, we [will] get injectable medicine from [neighborhood].” I told her I have forty thousand and she said, that forty thousand is not enough because I want to give ten thousand to the ‘Boda boda’ (business motorcyclist) as transport and forty thousand is for the medicine and she was very serious at this. I gave her the money. When I gave her the money, she went to the cupboard and got the medicine while I was looking at her and she came and injected me, and I delivered. I don’t know what to call that, because she asks for money, yet the drug is inside the cupboard, is it not corruption?... Sometimes drugs are there, but because no one follows up on drugs, they sell them to the people. So, women suffer during birth, others deliver in their houses, because they don’t have what to use in the health facility. If they are lucky and deliver well, they brag about delivering from home, because they have no money for the health facility. Those are the challenges we have. Sometimes you get sick and take herbs. If you are lucky to get well, you say I use herbal medicine when I get sick. So, that is the way we deal with health challenges. This is comparable to bragging about eating bad food, yet you don’t want it.”

As the woman describes, herbal or traditional medicine was seen as a last resort by participants when they were unable to access more formal medical services or medications.

Corruption

While many participants suspected that drug stock-outs were caused by corruption, many participants also reported having to pay bribes to receive services. Healthcare consultations are supposed to be free at government healthcare facilities.

Number 5: “I am talking about the condition of the hospitals we have in our area. In the private clinics they ask for a lot of money that you honestly do not have yet you are badly off. We are going through a hard time, even when we are admitted in the national referrals where services are supposed to be free, but we are charged unfairly. When we get there, the medical personnel want money before touching the patients; when you don’t give bribes, you can’t get any services from there. In those hospitals someone can die at the reception area without getting any help.”

Participants reported that they were asked for bribes even in emergent situations such as after serious car accidents or during labor and delivery.

Number 2: What I can add on about that point of [the national referral hospital]-. I got a problem; my brother got an accident and was taken to the hospital by a police patrol. He was thrown there at the reception, and they wanted twenty-five thousand, I had to first arrive and pay it before they could work on him. I thought since it’s a government facility they would work on him, and we pay later. He was on the floor bleeding to death at the cost of twenty-five thousand.”

Number 7: “This has even happened to me as a person. Now when I went to deliver [my] child, for me I heard that the midwife cannot attend to you without money, so for me I was like whoever attends to me is the one I will give money to….. For me, I had a feeling that I may give the money and her shift gets done, so I will owe the one who will attend to me. Midwives kept on just bypassing me. I had labor pains and time came when we came back home with my husband, then when we went back, one of the midwives said let me just help examine you and indeed I didn’t leave the examination bed, I was ready to push the baby and indeed after pushing the baby, she put the baby on me and disappeared and when she returned she asked whether I have her money, and when I said of course I do, I was only waiting to give it to the person who would attend to me and that is when she attended to me. So, there is no free hospital anymore. And medical personnel cannot attend to you before you pay. Even the hospital bed is paid for.”

Of course, the risk of asking for payment in emergent situations is that conditions can worsen, and patients may die while loved ones try to raise the money.

Respondent 5: “All along I have been quiet, but the issue of health, what my friend has talked about here is true. I once went to that hospital, we took there a child, a grandson to this one. We reached and a doctor who worked on the patient told us that if you don’t have UGX 100,000 I won’t help you and we tried to negotiate with the doctor and we requested that we give the doctor UGX 50,000 but he refused and we said okay, work on us and we shall give you the money that you have asked for. After working on the patient, we gave the doctor UGX 50,000 but it was all in vain. The second time we took the same patient, he was really in a bad condition, and they requested for a sum of not below UGX 150,000.

Discussion

Results from this study document that people living in informal settlements have inadequate access to healthcare while simultaneously experiencing many health challenges. Participants in this study, despite being in some cases meters away from the premier national referral hospital, reported long waits and drug stockouts as the norm. Further, most also described a system of corruption in which people are forced to make catastrophic health expenditures before the patient is provided with lifesaving treatment and less urgent treatment is forgone.

Unfortunately, this situation is not unusual. Roughly half of participants in round six of the Afrobarometer survey conducted in 30 African nations reported forgoing necessary medical treatment and 4 out of 10 respondents who succeeded in receiving care in the past year found it difficult to access [36]. A study in India found that providers spent an average of 3.6 min with patients and completed only one-third of recommended history and physical exams. Diagnoses were provided only 33% of the time, and of these only 12% were correct; harmful and incorrect treatment practices were more common than correct ones [37]. Equally poor primary health care is seen elsewhere in the world [38, 39]. Efforts to improve primary healthcare in LMICs have been gaining renewed attention since the 2018 Declaration of Astana; however, challenges persist [19, 20]. A recent review of measures to strengthen primary healthcare in LMICs suggest that fragmentation of services was a problem in 70% of the counties [20]. Participants in this study also mistrusted advice they received from informal providers, such as owners of small drug shops, who they suspected were unqualified to give medical advice. Studies in other LMICs have shown drug shop owners are poorly regulated, generally give whatever medicines the clients request, do little history taking or counseling, and have poor knowledge of medicine dosage and side effects [40]. However, some LMICs have outperformed high-income countries; these countries achieve such results by focusing on strengthening primary healthcare [41]. These countries can serve as models to improve healthcare access everywhere.

Our results showed no evidence of “diagonal planning” in which disease focused initiatives also improve the healthcare system as a whole. Healthcare is still largely fragmented according to the diseases that large GHIs have prioritized. Participants reported that care was available for people with HIV or TB, including obstetrical care, but not for those without these conditions. Efforts to decentralize healthcare in Uganda and develop coherent national health priorities with aligned funding have not been sustained since the early 2000 s as a resurgence of parallel health systems has accompanied a rise in funding from GHIs [42]. The World Health Organization’s most recent estimate of the doctor to patient ratio in Uganda is 0.2 per 1000, considerably below the 1:1000 recommended ratio. Similarly, many health indicators have remained stagnant such as maternal morbidity or distance to nearest health facility, while performance is good for those health indicators benefiting from GHI support (HIV prevention and care; vaccination) [42].

Results from this study add to literature that examines how participants balance issues of affordability and quality in making healthcare decisions. Most informal settlement residents did not benefit from GHI funding and faced high costs at private and public healthcare facilities. In public facilities, services were available for free (in theory) but were associated with high time and opportunity costs. Further, participants reported that they were often required to pay for medications that were out-of-stock. Private facilities charged user fees that were reported to be out of reach for most residents. Similarly, research conducted in informal settlements in Kenya and Nigeria has demonstrated that informal settlement residents will choose health clinics that they perceive to be highest quality even when they are the least accessible in terms of price or distance; cheaper alternatives such as informal drug stores or traditional healers are seen as a last resort [23]. Less research, however, has examined the effects of “unofficial” costs on these decision-making processes. Money saved on user fees for consultations could be used to pay for medications, but many participants reported being charged bribes before being seen. Bribes or paying informal “navigators” could help reduce opportunity and time costs associated with the public healthcare system but were also often out-of-reach for residents.

Results from this study also demonstrate that stockouts of medications and medical supplies are common, forcing patients to pay out of pocket for medicines or even basic hygiene supplies. Drug stockouts of essential medicines are common in LMICs and may be increasing. A recent review of the extent of community-level drug stock-outs of essential medicines among community health workers in LMICs showed stockouts have increased since 2006 among CHWs and the health facilities they were associated with (26.36%−48.65% and 7.79% to 14.28% respectively with distribution barriers cited as the most common reason [43]). Other reasons for drug stockouts include poor inventory and prediction of needs, supply chain problems, and no electronic health records. More than 33% of the world’s population and 50% of people in the poorest countries in Africa and Asia lack access to essential medicines [44]. Our participants also suggested that some of the medications had been stolen. It is essential that the frequency and reasons for these drug stockouts are discovered and addressed to provide quality primary healthcare to the most vulnerable people.

Participants complained of being charged for services that they felt were legally supposed to be provided for free. Lewis (2000) calls these”informal payments “ which “provide a means by which corrupt public servants” can ensure or maximize their income, evade taxes, and effectively “beat the system” and which he considers a form of corruption [45]. This was the explanation that some participants gave to asking for bribes as well; they reasoned that bribes were a way for the doctors to earn enough to live on. However, it must also be noted that these practices unfairly burden the poorest and most vulnerable and many participants in our study were unable to pay such bribes and needed to call on social network members to pay for needed treatment. Transparency International’s 2013 Corruption Barometer survey reported that over half the respondents in 42 of 109 countries viewed their health systems as being “corrupt” or “very corrupt” and 25% of participants globally reported that they had paid a bribe to access pubic services in the previous 12 months [36]. Interest in the effects of bribery on health outcomes in LMICs has grown [46–49]. Corruption has serious consequences for health, including lower life expectancy [50], low immunization rates [51], poor management of chronic conditions [52], and higher mortality, including maternal mortality [50, 53]. To improve healthcare, measures must be taken to combat corruption such as anonymous tips.

Strengths of our study lay in the benefits of conducting FGI which may have enabled members to build upon other respondents’ suggestions or elicit new perspectives. Conversely, this paper had some limitations. Participants were purposively selected to reflect different groups of participants living in informal settlements, but it is possible that we may have missed some groups with different experiences. As is typical with qualitative studies, the sample size was relatively small and the informal settlements were purposively selected, a non-probabilistic sampling method. Results, therefore, cannot be generalized beyond the informal settlements that served as study sites. Some participants may not have been comfortable expressing their opinions in a group setting and responses may have been affected also by social desirability bias.

Conclusions

Results from this study suggest that there are considerable gaps to universal healthcare in Uganda, particularly among residents of informal settlements. GHIs have created parallel healthcare systems which drain resources from universal healthcare and do not provide coverage for people who do not suffer priority diseases, while private not-for-profit and public centers are not accessible in terms of affordability and approachability. Efforts are needed to combat corruption and improve procurement.

Authors’ contributions

JDG conceptualized the study and wrote the manuscript text. AN directed qualitative data collection and coded qualitative data. All authors reviewed the manuscript.

Funding

This study was funded by the Medical College of Wisconsin, Office of Global Health Research.

Data availability

Data are not publicly available due to confidentiality concerns but can be obtained through the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

This research was reviewed and approved by IRBs at Makerere School of Public Health, protocol # 907, the Medical College of Wisconsin, PRO00038497, and the Uganda National Council for Science and Technology. All participants provided written, informed consent. The study adhered to the Declaration of Helsinki.

Consent to publication

Not applicable.

Competing interests

The authors declare no competing interests.