Impact of COVID-19 on healthcare services engagement: a qualitative study of experiences of people living with HIV and hypertension and their providers at two peri-urban HIV clinics in Uganda

Abstract

Background

The COVID-19 pandemic presented unprecedented complexity for health care seeking globally. Little is known on how people living with HIV (PLHIV) and other co-morbidities including hypertension accessed healthcare services in resource limited settings like Uganda. Therefore, we explored qualitatively how the COVID-19 pandemic which was characterized by travel restrictions, social distancing requirements, and a heightened COVID-19 response impacted health care seeking for PLHIV and health care provision by providers in this context. We explored experiences of both PLHIV with hypertension who sought care and healthcare providers who offered HIV and hypertension services at two peri-urban HIV clinics; Kira Health center and Kisubi Hospital, in Uganda.

Methods

We conducted 32 in-depth interviews at two peri-urban HIV clinics in Uganda with PLHIV and hypertension and their health care providers. We sought to understand PLHIV’s experiences seeking health care services and health care providers’ experiences delivering chronic care. We used an inductive thematic analysis drawing on the socio-ecological framework to explore this research question.

Results

Our findings reveal that that the COVID-19 pandemic presented an extraordinary set of challenges for individuals with chronic conditions who required routine healthcare services. The Uganda government’s stringent public health measures apparently made it difficult for patients to access health care, impacted jobs, resulted in job losses, reduced income, and food scarcity. Additionally, healthcare providers prioritized COVID-19 related health services, diverting both material and human resources away from PLHIV with co-morbidities, which impacted continuity of care.

Conclusion

These findings highlight how the COVID-19 pandemic exacerbated PLHIV’s fragility suggesting that health systems may need support to cope with the demands of chronic care management especially during health emergencies such as pandemics. There is an urgent need to strengthen the health system in Uganda enabling resilience to deal with shocks resulting from major health outbreaks.

Introduction

People living with HIV (PLHIV) in sub-Saharan Africa (SSA) have benefitted from anti-retroviral therapy (ART) and as such, are living longer and healthier lives [1]. However with the extended lifespan, they have an increased risk of developing non-communicable diseases (NCDs) including heart disease, stroke and renal disease [2]. Studies conducted in SSA including Uganda have found that the prevalence of hypertension among PLHIV between 15 and 25% which is disproportionately higher than the general population estimated at 10% [3]. Hypertension is one of the leading causes globally of mortality [4], the co-occurrence of HIV and NCDs like hypertension present a myriad of challenges for PLHIV specifically regarding access to hypertension care within HIV clinic settings [3]. Co-morbidity has been found to increase the complexity of managing PLHIV, often leading to poorer health outcomes and increased costs of health care despite the gains made by the advent of anti-retroviral therapy (ART) with significant improvements in viral suppression [2, 5, 6]. Chronic care for HIV and comorbidities like hypertension is particularly complex in non-pandemic time, it was therefore prudent to examine these services during challenging times such as pandemics in preparation for future global health emergencies.

In SSA, NCDs like hypertension (HTN) and Diabetes Mellitus (DM) continue to place a huge financial and health burden on PLHIV [7]. As the burden of NCDs rises across SSA, governments and development partners from the global north are exploring strategies to integrate HIV and NCD care to leverage HIV infrastructure to improve hypertension control among PLHIV. There are a number of trials on how chronic care for HIV, HTN and DM can be integrated into primary health care [8]. However, in Uganda, although there is an increase in the number of PLHIV who are retained in care, there are limited studies on NCDs such as hypertension whose prevalence is rapidly growing among PLHIV population thereby affecting the gains made by ART.

Hypertension among PLHIV has been rising rapidly particularly in aging ART-experienced PLHIV [9]. A recent meta-analysis conducted in different regions including SSA found that there is an estimated 25% prevalence of hypertension among PLHIV. Prevalence of comorbid conditions like hypertension increases the vulnerability of PLHIV [9, 10]. Studies have found that PLHIV with non-HIV related comorbidities such as hypertension experience a myriad of challenges as they navigate care and treatment in low resource settings like Uganda [11].

In 2020, WHO declared a global pandemic of COVID-19 [12] which greatly impacted the way in which health services were accessed by different sub-populations. Majority of the literature documents COVID-19’s impact on the general population and access to health services [13]. However, there is limited research on how PLHIV with co-morbidities like hypertension have navigated care seeking for HIV and co-morbid conditions like hypertension during the COVID-19 pandemic [14, 15]. We focus on PLHIV with co-morbidities given that individuals with chronic conditions like HIV, hypertension and diabetes were found to be at increased risk for COVID-19 infection and its related complications [16, 17]. Given the disruptive nature of the COVID-19 on the healthcare system, it was important to explore how PLHIV with hypertension navigated health service engagement given their unique needs [18].

Documented evidence suggested that COVID-19 greatly impacted lives, affecting communities through job losses, food insecurity, economic instability and an inability to access health services resulting in poor management of existing medical conditions. In addition to stringent COVID-19 mitigation measures instituted by African governments [19, 20]. Preventive measures such as social distancing, stringent ‘stay at home’ orders and banning travel and enacting measures curtailing transport systems led to disruptions in health care seeking for people with chronic illness and complex conditions which typically require in-person monitoring [21].

In March 2020, the government of Uganda (GOU) imposed a nation-wide lockdown following the first wave of the COVID-19 pandemic, banning travel and enacting several measures to curtail movement of persons across the country. In addition, Uganda experienced a second wave of COVID-19 infections resulting in a second nationwide lockdown in June 2021. These measures resulted in significant disruptions in the delivery of health services across the country. Persons with chronic conditions requiring regular monitoring were unable to access in-person care at primary health facilities across the country [19]. The GOU’s priority was to significantly reduce the transmission of COVID-19, with health facilities considered “hot spots” for transmission. However, this affected access to secondary and tertiary health services for patients with complex health needs such as PLHIV with co-morbid conditions like hypertension.

There is limited research on the experiences of sub-populations like PLHIV who have complex co-morbid conditions including hypertension and how they navigated care seeking during the pandemic. The purpose of this paper therefore was to understand the experiences of PLHIV with comorbid conditions like hypertension identifying enabling or hindering health and wellbeing determinants to inform interventions that could build resilience of the health system to address health care needs of PLHIV with co-morbidities needing long term chronic care in the context of pandemics [22].

Theoretical framework

The socio-ecological model

We used Bronfenbrenner’s socio-ecological model (Fig. 1) to identify enabling and hindering health and wellbeing determinants across the different levels of influence [23]. This model proposes five multi-levels of influence which are: (1) intrapersonal factors which entail biological and personal history factors like knowledge, skills, attitudes, education and income; (2) Interpersonal factors, which involve formal or informal social networks including, support systems such as family, working groups or friendships; (3) Institutional factors which include social institutions with organizational characteristics, formal or informal rules and regulations; (4) community factors which entail relationships among organization, informal networks and institutions and; (5) public policy level which involves local, state and national laws or policies. This framework allows us to contextualize PLHIV with hypertension, their experiences and deepen our understanding of the interactions between actors, networks and agencies [23].

Fig. 1

Socio-ecological model illustrating a multi-level influences of COVID-19 on health care seeking among PLHIV with co-morbid hypertension; adapted from [23] for this study

Materials and methods

Study design

In this qualitative study, we sought to understand PLHIV’s and health care providers’ experiences of seeking and providing hypertension care during the COVID-19 global pandemic respectively. In order to understand the rich micro and macro contexts that shaped PLHIV’s and providers’ experiences of hypertension services during the COVID-19 pandemic, we adopted an exploratory qualitative methods approach which enable an exploration of experiences of a given phenomenon [24]. In light of this methodological approach, in-depth interviews (IDIs) were utilized with PLHIV and key informant interviews (KIIs) with healthcare providers at the two study sites.

Study setting and population

We conducted the study between July and September 2022 at two HIV clinics in Wakiso district encircling Uganda’s capital city, Kampala. These facilities were: Kira Health Centre IV - a public health facility providing care to over 1200 PLHIV, and Kisubi hospital – a faith-based private not for profit hospital serving over 2000 PLHIV with technical and administrative support from Uganda Catholic Medical Bureau, a local non-governmental organization. The study participants included PLHIV with hypertension and healthcare providers involved in delivery of hypertension care at the above-mentioned facilities.

Participants were eligible to participate in the study if: 1) they were living with HIV and hypertension: 2) aged 18 years or older, and: 3) had sought HIV and hypertension services during the COVID-19 pandemic at either of the two health facilities. We received assistance from health care providers at the two HIV clinics to identify and contact PLHIV with hypertension who were interested in participating in the study and met the eligibility criteria. Those who agreed to participate were invited for interview at a time convenient for them within the health facility premises.

For health care providers, we considered those directly involved in the provision of HIV and hypertension services during the COVID-19 pandemic [3]. We approached health care providers at the two clinics and those willing to participate. Those who met the eligibility criteria were invited for interviews at a time of their convenience within the health facility premises. We used maximum variation to select health care providers by cadre for example: nurses, counsellors, clinical officers and physicians.

Sampling and sample size estimation

We used purposive sampling, an approach in which information-rich cases pertinent to understanding the breadth and depth of a phenomenon are intentionally selected for this study, see Table 1 for details of type of data collection and location. Target sample sizes were based on the principle of saturation which in this case typically occurred between six and twelve interviews within a homogenous sample [24,25,26]. We interviewed 32 individuals until saturation was achieved where no new information was obtained. For PLHIV data saturation was achieved at the 15th participant while for healthcare providers, saturation occurred at the 17th participant.

Table 1 Study participants by type of data collection method and location

PLHIV with hypertension who received care during the COVID-19 pandemic were purposively identified with the help of healthcare providers at the two HIV clinics who had access to their files/charts and facilitated contact with eligible PLHIV. Once identified, the study team briefly described the study, confirmed interest and eligibility and scheduled an interview at a convenient time for the participant.

Data collection

In-depth interviews and key informant interviews

We conducted face-to-face in-depth interviews (IDIs) with PLHIV who self-reported that they were hypertensive, and had previously received a hypertension diagnosis at HIV clinics in Kira Health Centre IV and Kisubi Hospitals. IDIs were conducted in the participant’s preferred language which was either Luganda or English. A team of two experienced research assistants (JS and CK) (one male and one female) received training on the study protocol and subsequently conducted the in-depth interviews with PLHIV. The lead author (FA) conducted key informant interviews with health care providers. FA is a behavioral social scientist and holds a Master of Science degree with over 10 years of experience conducting qualitative research. The research assistants (CK and JS) are currently enrolled in Masters’ degree programs and have experience conducting qualitative research. Interviews were conducted using semi-structured interview guides for PLHIV and key informant interview guides for health care providers. The interview guides were theory informed included open-ended questions and suggested probes; however, interviewers had the flexibility to explore themes that emerged naturally during the conversation. The semi-structured interview guide (Supplementary file 1) for PLHIV explored their experiences with health care seeking for hypertension services during the COVID-19 pandemic and the factors that created barriers to receiving services and how these affected their quality of life.

Key informant interviews (KIIs) with health care providers explored the provision of HIV and hypertension services during the COVID-19 pandemic and were conducted by the lead author. The key informant interview guide (Supplementary file 2) explored healthcare provider experiences providing care for PLHIV with hypertension during the COVID-19 pandemic, it explored the changes that may have arisen out of the COVID-19 and how the health system adjusted during this period.

All interviews were conducted at a convenient time and place within the health facility based on the participant’s choice to ensure privacy and confidentiality. Interviews typically lasted between 30 and 45 min, were audio recorded and later transcribed or translated into English. We collected socio-demographic data from all participants.

Quality control measures

Interviewers (JS and CK) were trained on the study protocol and procedures therein; they also had certificates in Good Clinical Practice (GCP) and Human Subjects Research (HSR). The interview guides were pre-tested with PLHIV with comorbid hypertension and healthcare providers at a non-participating HIV clinic. Collected data was backed up on password protected computers and hard drives. Access to data was only granted to members of the research team.

Data management and analysis

All data from in-depth interviews with PLHIV and key informant interviews with health care providers were audio-recorded, transcribed verbatim and translated into English. The audio files were transferred to a password-protected computer only accessible by the study team. Transcripts were managed using QSR International’s qualitative data analysis software NVivo version 20. We used an inductive thematic analysis approach following three steps (1) Familiarization with the data through reading and re-reading the transcripts; (2) coding the data, identifying themes, following a review of a sample of transcripts, thematic analysis [27, 28] was performed using inductive emergent and deductive approaches. A sample of transcripts was reviewed by three members of the research team (FA, CK and JS) noting emerging issues in order to identify initial codes which formed the basis for development of a codebook. After a series of meetings discussing the codebook, transcripts were de-identified and uploaded into NVivo 20 as well as the code book. The coding was conducted by the lead author (FA) with support from the research assistants (JS and CK), coding was done independently followed by a series of meetings where codes were synthesized into broader themes. In addition, the themes were mapped onto the socio-ecological model which informed the design of the study. We adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) [29] to develop this manuscript.

Ethics and consenting

This study was approved by The AIDS Support Organization’s Research and Ethics Committee (TASO 2022-96) and registered with the Uganda National Council for Science and Technology (UNCST REF: HS2186ES). We obtained administrative clearance to conduct the study from Wakiso District for Kira Health Center and Kisubi hospital authorities prior to commencement of study activities at the two HIV clinics. Written informed consent was obtained from each participant prior to participation in research activities. The study team ensured participants’ privacy by conducting interviews in a private and convenient place within the health facility premises. Confidentiality was assured by de-identifying the data, participants were assigned a unique study identification number. In addition, the qualitative data set was kept in a password protected computer. We adhered to the principles in the Declaration of Helsinki during the conduct of this study [30].

Results

Demographic characteristics of participants

A total of 32 semi-structured interviews were conducted with PLHIV with hypertension (n = 15) and health care providers (n = 17) across the two study sites. The study sample of PLHIV mainly comprised of women who were 60% of the sample. PLHIV with hypertension were of different occupations such as boda boda riders (commercial bicycle or motorcycle used as a taxi for carrying passengers and/or good) (n = 4), market vendors (n = 3), and security guards (n = 2) or engaged in other informal business such as fish vending, vegetable and food stalls (n = 8). Health care providers were mainly women (82.3%) drawn from different cadres namely; nurses, nurse counselors, clinical officers and physician providing HIV and hypertension services at Kira Health Centre IV and Kisubi Hospital. Details of demographics for participants can be found in Table 2 for PLHIV and Table 3 for healthcare providers respectively.

Table 2 Demographic characteristics of PLHIV with hypertension. PLHIV with hypertension (n=15)

Table 3 Demographic Characteristics of health care providers

We present four overarching themes that resulted from the analysis. We also used the socio-ecological framework to discuss the results in the discussion section. These themes included: fear of COVID-19 infection, loss of income and livelihood, shifting priorities of health care, patterns of resort, suggestions for resilient health systems.

Fear of COVID-19 infection

PLHIV and health care providers alike reported an inherent fear of COVID-19 infection. They perceived that this was due to public health measures that instituted social distancing standard operating procedures across the country. For example, PLHIV reported experiencing fear to seek health care services at hospitals or clinics explaining that they thought it would place them at risk of COVID-19 infection.

“I was afraid of going to the health facilities because everyone was saying…there is COVID. So I thought that if I come to the clinic, I might contract the virus I decided to stay at home and find other ways of dealing with my condition. I used to try and get green vegetables from my garden” (Female, 66 years)

Similarly, healthcare providers noted that changes in some of the protocols for blood pressure screening during the COVID-19 pandemic discouraged close contact with PLHIV which they believed, would prevent COVID-19 infection. In addition to protocol changes, healthcare providers stated that they were also afraid of close contact with patients which they believed placed them at risk of COVID 19 infection.

A health care provider describes the fear they experienced when patients came to the clinic.

“One of the challenges we faced was that, we used to fear coming into contact with patients. When a patient entered a room we were afraid of them because we thought they could be having COVID-19” (Nurse, Kisubi hospital)

Health care providers noted that patient volume at the health facilities was very low indicating not only a fear of COVID-19 infection but also limited access to health services amidst transport challenges. HIV related services were prioritized by implementing partners. For example, at one of the clinics (Kisubi Hospital) the local implementing partner (Uganda Catholic Medical Bureau) provided support for health care providers to reach PLHIV in the communities to deliver HIV specific services.

What was obvious over time is that the numbers of patients attending to the clinic reduced because of these circumstances that came with COVID-19 so you had the lockdown, you had the limitation in mobility in terms of transport services, you had all the technicalities that had to come with coming to the hospital, patients had to have a letter from the local council chairperson to be allowed to move around and then we also had the financial consequences that came around and also the general fear among the patients, So, it’s highly likely that most of the patients might have defaulted on their medications because of other reasons apart from failure to access the services or the fact that they didn’t have those services nearer to them. (Physician, Kisubi Hospital)

Impact on socio-economic status

Loss of income and livelihood

PLHIV explained that the public health measures led to loss of income, which affected their ability to purchase anti-hypertensive medicines. They attributed loss of income and livelihood to closure of business activities across the country. In addition, PLHIV reported that the impact on income also resulted in priority setting at individual level, where one had to prioritize feeding themselves and their household over seeking care or treatment for hypertension. In the excerpt below, a PLHIV explains how his livelihood was impacted.

It is during COVID-19 that my situation was bad. Before COVID we would work until ten or eleven pm but after we had to be home by seven pm because of curfew. This affected our income and ability to buy medicine or hire a motorcycle and also save some money for food, it became impossible. (Male, 54 years)

PLHIV mentioned specific challenges accessing hypertension care resulting from COVID-19 restrictions on travel. They explained that travel restrictions curtailed their movement to hospitals, health centers and drug shops/pharmacies.

It wasn’t easy for me since I could not access medical personnel; the process to travel and see a doctor was very lengthy and bureaucratic to get a written movement permit. (Male, 84 years)

For example, due to financial constraints, they mentioned missing doses because medicines were costly during this period.

“Sometimes when I didn’t have money; I would miss taking my medication for some days after which if one checked your blood pressure, it was high. Medicine was costly and we were financially constrained during COVID-19 lockdown” (Female, 39 years)

PLHIV frequently grappled with access to medicines, explaining that they had to travel long distances to reach these facilities which sold the medicines at a prohibitive cost.

I faced difficulty since there was nowhere I could get medicine and in hospitals where it would be one had to walk long distances yet it was costly in private facilities (Female, 50 years)

Since they can predict such lockdowns, medical personnel need to prepare for us better ways of accessing medication during such times. (Male, 54 years)

In terms of medicine like for HIV and hypertension, there was nothing at Kira health center may be if they have restocked now. I have HIV, diabetes and hypertension, it was so hard for me to access any services. (Female 35 years)

Patterns of resort

PLHIV reported using different options in order to address their challenges to healthcare access for hypertension. These were referred to as patterns of resort – decisions PLHIV took as alternative modes of care to address the gap in accessing hypertension care during the COVID-19 pandemic. They reported using different local resources to meet these needs such as;

Lifestyle changes

PLHIV reported that they had to make lifestyle changes to mitigate and alleviate their symptoms. These were typically changes in the types of food consumed or physical exercises they performed which they believed improved or alleviated their symptoms.

Use of herbal remedies

In addition, consumption of herbal remedies was perceived to be an important alternative to getting some relief from the condition. A female PLHIV explains how she used herbal remedies to address her symptoms.

I was only taking herbs to treat my blood pressure. I would get a little relief, I could not afford to buy anti-hypertensive and when I had my blood pressure taken following the COVID-19 crisis, my blood pressure was very high. (Female, 35 years)

We had no medicine and resorted to herbs. The cough was growing stronger and we had to resort to herbs. Herbal medicine especially bitter leaves, cannabis leaves, sour berries and taking warm water early morning before eating anything to cleanse the body. I grew up seeing my grandparent using them, although hypertension would keep on and off even when you take herbs (Male, 49 years)

I would use the Chinese mushroom with water and tea leaves. (Male, 84 years)

A PLHIV explains self-encouragement as a pattern of resort to address emotional challenges, which are described as worrying too much in the excerpt below;

It was terrible during COVID-19 period; it was worse than before. It was a shock, with no money and I just had to encourage myself from worrying too much. Having to be firm that the hard situation will pass and I would survive (Male, 54 years)

PLHIV’s patterns of resort also shifted based on their access to biomedicine. Faith and spirituality was a pattern of resort that a number of PLHIV reported being increasingly more important due to COVID-19 and its associated impact on their lives.

Hierarchy of needs

PLHIV reported the effect of COVID-19 on household incomes and the need to prioritize feeding their families to addressing any health care challenges they may have had. Livelihoods were reportedly affected where breadwinners lost their sources of incomes which impacted the way the family organized and set priorities for its resources. Majority of PLHIV in our sample mentioned the need to ration their resources based on priority needs at the family and household level such as food and soap, this also depended on what they could afford by day, week or month.

At the interpersonal level priority setting was important to ensure the family and social network were able to have a meal. The priority was to feed family, which was a challenge given lack of work or income sources.

The worrying situation we faced, having a family to feed without money. This was the major worry. (Male, 49 years)

Without money one couldn’t get medicine, whenever I lost my animals, my income would be badly affected and I couldn’t afford medicine. Even medicine for my pigs, since we couldn’t reach them easily for medication and many succumbed to swine fever. (Female, 54 years)

We were badly off; one would wake up in the morning with only ten thousand shillings and yet had to buy medicine and also need other household needs to feed the family. We had to choose which one to buy, which was food. (Female, 54 years)

Through financial difficulty I had to feed my family yet I was also ill. I was advised to take my medicine and encouraged to eat and drink but I was financially unable to do both of these things. (Female, 39 years)

Limited access to medicines for hypertension

Throughout interviews with PLHIV, they noted that closures of business impacted their access to medicines. Community drug shops or pharmacies earlier in the pandemic had restrictions on opening and closing hours. In many cases PLHIV were not allowed to leave their homes to travel to these establishments to access medications. PLHIV who were able to access a health facility noted that there were frequent stock outs of anti-hypertensive medicines at public health facilities.

Sometimes you would miss out taking medicine when you don’t have money. That would happen like three times or twice a month that I would miss out (Male, 49 years)

I was feeling so bad and on checking my blood pressure had reached 200. I was told to stop alcohol, since I had gotten addicted to it and it worsened my hypertension since I had also taken long without medication amid the worrying COVID-19 situation. We were financially constrained and all not sure of survival (Male, 84 years)

The situation just worsened during COVID-19 badly affected my life. I never had medicine to sustain me and we thought it would not take that long, we were home, not working and no way you could tell medical personnel to open and give you some medicine (Male, 49 years)

It wasn’t an easy period, since we were all not prepared and financially constrained to even afford medicine. Due to this shock my blood pressure rose and we faced challenges for so long a time. Time came that you could not buy medicine anywhere since all places were closed (Male, 49 years)

Shifting priorities at health facility level

Health care providers highlighted challenges related to change in prioritization in the delivery of health services. Resources, both physical and human were diverted to the prevention and control of COVID-19 infection. Resources were re-directed to the COVID-19 support due to high number of clients needing care (human, PPE, supplies needed to treat COVID-19).

When COVID-19 came, people lost focus on these other diseases like HIV and the other non-communicable diseases (Clinical officer, Kisubi Hospital)

A lot of focus was placed on identifying potential infections, implementing infection control protocols and implementing COVID-19 standard operating procedures in the health facilities which included decontamination of spaces, social distancing and providing emergency related services.

Clients with hypertension, we often advised them to seek health services at the nearest health units. For those ones who had some medication, we advised them to continue to adhere. Others we advised to go and buy their medicine at drug shops within their area of residence (Nurse, Kisubi hospital)

…for the hypertensive clients because they were not looked at and they were not a priority during that period of time. People with hypertension were there and sick but the medicines to support these people were not provided and they were not looked at as a priority (Medical clinical officer, Kisubi hospital)

Human resource challenges

Re-direction of the health workforce to COVID-19 response meant that very limited staff were available to provide clinical services in other departments which ultimately affected comprehensive service provision.

First of all, we had a high number of COVID-19 patients admitted so in terms of resources those had to be redirected. We had to call in some of the medical officers who were in other units to come and provide support on ward and what that also meant is that a lot of times you would have to manage your time to divide between the patients that required more emergency care and the patients who were generally more stable (Physician, Kisubi hospital)

A few healthcare providers also reported insufficient personal protective equipment and other related protective equipment. This reportedly discouraged them from direct client contact given that screening for hypertension requires direct contact with a health worker as they had to touch the client in order to correctly place the BP machine for fear of contracting COVID-19.

NCDs, because those required contact and you know social distancing, many of the clients would not have masks and actually I would hear it from my colleagues, “Do not come close to me you don’t have a mask. So if someone was not wearing a mask how will I take the BP?… so we least supported those NCDs, HIV testing we would do that because the lab people would put on the protective gear and do the testing but NCDs those ones were so much affected and even the time to talk with you was limited besides giving you the drugs even when you have hypertension they wouldn’t give you time but instead they would prioritize HIV, period (Counsellor, Kisubi hospital)

Transport challenges

Transport to health facilities was difficult for health workers depending on which security personnel they encountered. Although health care providers had been classified as essential workers with permission to travel and access health facilities, enforcement of these directives was done by security personnel who at times did not understand the directive and often harassed health care providers as they sought to travel to health facilities or back home after their shift.

It was a very difficult time: no work, no money, no means of transport. One could not even move to look for opportunities, not even to Mulago, due to travel restrictions. There was nothing here. In terms of medicine like for HIV and hypertension, there was nothing at Kira; may be they have restocked now. I have HIV, diabetes and hypertension; it was so hard for me. My advice to government would be to prioritize health since people can’t work while sick and weak. Drugs should be fully stocked at every health center to relieve us from pain and being worried. (Male, 35 years)

Limited movement actually affected us in very many ways; both on the side of healthcare worker and the clients we were taking care of (Medical clinical officer, Kisubi hospital)

In addition, there was scarcity in transport since this had been suspended especially the motorbike riders referred to as “boda bodas” who often provided a faster option of movement. Price raises and fear of the police was a deterrent for their activities, as such providers had to navigate these challenges to reach the facilities.

Public health measures

Nation-wide lockdown and containment measures reportedly caused disruption in health service provision. Health care resources were reportedly diverted from other departments to address COVID-19. Healthcare providers highlighted disruption in routine services including chronic care where human resources were re-directed to support COVID-19 treatment centers.

All the other diseases should be looked at equally and provide a team which remains constant for these other diseases. Have a team that will look at say COVID-19, but this other team will not be suppressed. For instance, when COVID-19 came, all the teams which were managing the common diseases were suppressed, in the first lock down all of us who were managing the common diseases were taken up and swallowed into COVID-19 management, which meant that a ward that had 30 nurses, 15 were put in isolation to manage COVID-19 clients and the 15 would remain manage malaria, HIV, TB, manage like 20 other diseases but the 15 are managing only one disease. (Clinical officer, Kisubi Hospital)

Suggestions for continuity of chronic care during pandemics

Clients and health care providers alike suggested various ways in which the government could ensure continuum of health services for all categories of population groups in similar contexts. Respondents believed that government needed to establish and leverage technological solutions, differentiated service delivery models as utilized for HIV services.

We would know we have 100 clients suffering from diabetes, we have 200 of hypertension, and we have 200 of HIV and we plan for them equally. Even when the other diseases have come, you will have a long term plan for these other diseases you have been with and they will not be interrupted (Clinical officer, Kisubi hospital)

Participants emphasized the need for health policy planners to anticipate disasters such as pandemics and put in place emergency plans which would ensure that services for persons with chronic and complex conditions have options they can turn to.

When COVID-19 came, they would have given us transport, given us enough personal protective equipment to use at the facility and find ways to help people with chronic diseases. This was not the case, the focus was only on COVID-19, other conditions were not a priority. (Clinical officer, Kira Health Centre)

So what I think if we could provide a system were by every person can get healthcare services no matter the situation, in that if there was an insurance to make sure that anybody even if you are not suffering from COVID-19 and I have hypertension, I can go to any facility near me and I would not be told that medicine is out of stock. (Clinical officer, Kisubi hospital)

Medical vehicles in my opinion would be left to move during travel restrictions, we failed to get medicine because of travel bans. This will ease access to medicine as it can be delivered to clients wherever they are or at health facilities closer to them. (Male, 49 years)

Discussion

This qualitative study explored health care seeking among PLHIV with hypertension as well as health care provider experiences of health service delivery during the COVID-19 pandemic in Uganda. Our study identified barriers to health care seeking resulting from the pandemic. We found that experiences were expressed along the following themes: fear of COVID-19 infection where clients and healthcare providers alike highlighted fear of contracting COVID-19, for PLHIV they stayed away from health facilities while healthcare providers limited interaction with clients during physical examination if they perceived that this exposed them to risk of COVID-19 infection; Impact on social economic status (loss of income and livelihood) was highlighted by PLHIV who shared that they lost livelihoods and sources of income exacerbating economic hardship. In addition, they noted that the dire economic situation informed the self-management of their hypertension by seeking alternative remedies as well as re-evaluating their needs based on a hierarchy of needs. They also highlighted limited access to antihypertensive medicines. For healthcare providers, the COVID-19 pandemic led to shifting priorities at health facilities; human resource challenges; transport challenges and navigating public health measures. The findings denote the unique experiences of PLHIV with co-morbid hypertension but also highlight opportunities for intervention to support PLHIV with co-morbidities who interface with the health system more frequently than the general population specifically during public health crises by identifying instances where short and long term vulnerability may emerge. The COVID-19 pandemic context caused a myriad of disruptions. Barriers ranged from individual level, based on income status, attitudes to seeking care in the context of COVID-19 specifically the fear of COVID-19 to the interpersonal level, where we identified barriers like socio-economic status which affected the way priorities were made at household level and in turn the hierarchy of needs, with hypertension ranking low on this. These findings are consistent with a study conducted in Kenya and Uganda which illustrates COVID-19’s impact on household income and food security [20]. At the organizational level we identified barriers that directly affected health care providers – these included The diversion of health resources to COVID-19 response resulted in the low prioritization of routine services. Hypertension services such as screening, monitoring and treatment were not prioritized [31]. Prioritization shifted to the COVID-19 response at the expense of chronic care services. As has been reported in other parts of SSA, COVID-19 placed a huge burden on health systems in low and middle income countries which resulted in changes in the way clients sought and accessed care. In addition, Health providers had to prioritize COVID-19 which greatly impacted other services, diverting both human and physical resources to COVID-19. Although our study sample may not fully represent the wide range of vulnerable populations with chronic conditions like HIV and hypertension, in Uganda and beyond, the findings have both an empirical and theoretical value, and therefore could be generalized to similar contexts [32]. We also found a consensus among both clients and healthcare providers about their experiences of health services for HIV and hypertension during the context of COVID-19. The resilience of the health system in sustaining consistent health care delivery [33] for persons with chronic conditions such as HIV and hypertension was an important finding as it identifies key gaps in epidemic or pandemic preparedness as well as the need to leverage differentiated delivery of services that have been introduced in HIV programming in order to bring services closer to the people in their communities.

Our findings show that policy level factors were significantly impactful to care seeking as they affected all levels including the individual, interpersonal and community level. PLHIV and Health providers alike experienced a myriad of challenges as they sought to access health services at hospital or deliver health services respectively. Inadvertently, the COVID-19 restrictions impacted livelihoods which then resulted in PLHIV prioritizing access to basic needs such as food for their family over addressing health needs [34].

Re-imagining the way health services are delivered for persons with chronic conditions such as PLHIV with hypertension is important to inform strategies that could build resilient health systems, leveraging existing PLHIV services such as those put into place by the HIV program, bringing services closer to the communities through community models for people with chronic conditions. Resilience of the health care system will require significant input from stakeholders within the health sector – including decision and policy makers to ensure continuity of health service engagement and delivery in times of crises such as a pandemic [18, 35]. The key challenge of the COVID-19 pandemic for the Ugandan health system was that it was not able to sufficiently absorb the shocks that came with disruption, the health system struggled to adapt and transform in order to respond quickly to these shocks suggesting poor absorptive and adaptive capabilities [36]. PLHIV with multi-morbidity will need continuity of care - adaptations to ensure they were able to receive their medicines for both HIV and other chronic conditions. We note that no provisions were made for co-morbidities. Improving preparedness will be important to ensure the health system can address care seeking and service utilization gaps [37]. The study highlights the negative influence of the COVID-19 pandemic on health service engagement, need for strengthening health systems, leveraging other emergency responses that were instituted by the HIV program, which ensured PLHIV had ART services.

Limitations of the study

We conducted this study in a peri-urban setting and may not be generalizable to rural settings. A prospective analysis with follow-up to examining how PLHIV cope as the pandemic unfolds would have been ideal but was not possible. The findings of the study may not be generalized as representative of all PLHIV with co-morbid hypertension and their providers involved in health service delivery during the COVID-19 pandemic however, it provides important insights as to individual lived experiences of vulnerable groups such as PLHIV with co-morbidities who may be more susceptible to interruptions in health care during pandemics in low resource settings.

Conclusions

The study generated evidence on multi-level contextual factors which presented barriers to accessing optimal health services for PLHIV with co-morbid hypertension and challenges healthcare providers faced in providing comprehensive health services. The disruption of the healthcare services during the COVID-19 pandemic, with efforts predominantly focused on curbing COVID-19 infection meant that co-morbidities were not prioritized. This presented challenges for chronic care management - for individuals with underlying chronic conditions like HIV, hypertension and diabetes. These findings contribute important insights which can be utilized to the design of strategies to build resilient health care systems in the context of pandemics specifically in resource limited settings with fragile health systems [38].