Original Research

Health system factors influencing rheumatic heart disease prevention in nine African countries

Hlengiwe Moloi, Liesl Zühlke, Mark Engel, Karen Daniels

Received: 22 May 2025; Accepted: 10 Oct. 2025; Published: 08 Dec. 2025

Copyright: © 2025. The Authors. Licensee: AOSIS.
This work is licensed under the Creative Commons Attribution 4.0 International (CC BY 4.0) license (https://creativecommons.org/licenses/by/4.0/).

Abstract

Background: Rheumatic heart disease (RHD) is a public health concern in Africa despite prevention and treatment interventions being available.

Aim: To gather stakeholders’ viewpoints on health system factors influencing the implementation of RHD interventions in African countries.

Setting: Cameroon, Malawi, Namibia, Rwanda, South Africa, Sudan, Tanzania, Uganda and Zambia.

Methods: Thirty-one in-depth interviews were conducted with individuals who work in or have received RHD services in any of the nine African countries to explore health system factors influencing RHD diagnosis and treatment, access to RHD surgery and policy decisions regarding RHD. The analysis followed an inductive thematic approach, coding segments of transcripts based on the research objectives and grouping codes with similar meanings into categories, which were subsequently consolidated into themes.

Results: Inadequate health promotion, financial constraints, geographic distance, and limited knowledge and skills among healthcare workers hinder the diagnosis and treatment of RHD. Low health literacy, affordability, and geography reduce access to RHD surgery. The low prioritisation of RHD in health agendas, poor data collection, and the influence of international stakeholders and local politics affect health ministers’ decisions regarding RHD programs.

Conclusion: Limited knowledge of RHD among healthcare workers hampers both service delivery and data collection for policymaking. Although advocacy has successfully raised RHD awareness in policy spaces, increased efforts are necessary to elevate RHD on national agendas.

Contribution: These findings can support RHD programmes by providing insights into how individuals and groups at different health levels across various African countries might respond to interventions.

Keywords: Africa; rheumatic heart disease; diagnosis and treatment; surgery; health systems and policy.

Background

Health systems are dynamic and flexible and are impacted by factors both within and outside the health system.¹ These factors guide and shape the health system and alter its overall effectiveness in delivering services.¹ Understanding the influence of these factors on the delivery of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) prevention and treatment interventions is important to help explain the continued burden of RHD in African countries and provide insight to strengthen health systems to address this burden.

Thirty-three per cent of people with RHD live in Africa, and 6.8% of RHD-related deaths worldwide occur in African countries.² In sub-Saharan Africa, RHD is the second leading cause of heart failure in children and young adults, accounting for half of the world’s paediatric cases of RHD. It is also the third leading cause of heart failure in adults in sub-Saharan Africa.^2,3,4

Rheumatic heart disease is a public health concern in African countries despite knowledge of evidence-based effective prevention and treatment interventions. Rheumatic heart disease can be prevented by treating Group A streptococcus (Strep A) throat infection with penicillin, and ARF and RHD can be ameliorated through timeous penicillin therapy and focused medical management.⁵ Surgery can replace or repair damaged valves. The delivery of these interventions requires an organised and efficient health system and is a key factor in the low rates of RHD in high-income countries (HICs). Furthermore, national RHD prevention programmes implemented in some low- and middle-income countries (LMICs) have effectively reduced new RHD cases and RHD-related deaths.^6,7

In African countries, the implementation of interventions has been hampered by various barriers in the health system, which include the unavailability of these services, the unaffordable costs of services and insufficient healthcare capacity to deliver these preventive measures and surgical interventions.^8,9 Furthermore, RHD receives inadequate political attention and resources.¹⁰

In 2018, at the World Health Assembly (WHA), countries globally committed to addressing the burden of RHD by adopting a resolution on ARF and RHD.¹¹ The resolution provides opportunities for countries, especially in Africa, to strengthen their health systems to deliver RHD interventions. Recommendations three and four urge ministers to improve access to primary healthcare (PHC) and ensure access to diagnostic technologies and medicines for RHD, respectively. Moreover, recommendation five calls for utilising and sharing best practices for preventing and treating RHD.¹¹

To contribute to African countries tackling these health system issues and assist in implementing these recommendations, we conducted a situational analysis of the prevention and control of ARF and RHD in Cameroon, Malawi, Namibia, Rwanda, South Africa, Sudan, Tanzania, Uganda and Zambia. We gathered input from various perspectives and experiences on health system factors that influenced prevention and control interventions. We present the stakeholders’ viewpoint on ARF and RHD prevention and treatment status in these countries.

Specifically, we describe:

• Health system aspects that influence the diagnosis of strep A throat infection, ARF and RHD.
• Health system aspects that influence the treatment of ARF and RHD.
• Health system aspects that influence surgery as a result of RHD.
• Health system factors that have influenced health ministers’ policy decisions to strengthen and where appropriate develop and implement ARF and RHD prevention and control programmes.

This study is part of a larger study that aimed to develop an evidence-based scorecard for monitoring the implementation of the resolution in African countries.¹² These findings informed the development of health systems indicators that are universally exchangeable but remain locally relevant.

Research methods and design

We used a qualitative research design to explore the perspectives and experiences of individuals involved in shaping and implementing policies related to the prevention and control of these diseases, as well as those impacted by such decisions.

Study design

We draw on the interpretivist paradigm; it recognises that no single truth exists and that the world is open to human interpretation. Therefore, we can deepen our understanding of the delivery and receipt of health system interventions by understanding the multiple ways in which stakeholders engaged in the phenomenon under investigation and experienced it.¹³ Thus, we understand that stakeholders may interpret their experiences differently, depending on their social and cultural influences, their position in society and their relationship to the phenomenon being investigated. Our intention and aim are to explore the diverse experiences and realities of stakeholders, allowing for a more nuanced approach to decision-making for the prevention and control of RHD, particularly in the contexts where this study was conducted.

Sampling framework and approach

We attempted to find participants, across multiple African settings, who had at least 2 years of experience living or working with RHD, in the following categories: (1) research, training and capacity building, (2) healthcare service delivery, (3) health policy and administration, (4) civil society and general public and (5) education sector.¹⁴

We used purposive and snowball sampling. We contacted potential participants who fulfilled our sampling frame criteria. These included RHD stakeholders with whom we had direct or indirect contact, such as those we met at RHD conferences and meetings; stakeholders who collaborated with L.Z. and M.E. on research projects, and those who participated in projects led by them. Furthermore, we contacted stakeholders we had identified by searching RHD-related websites such as Reach, the World Heart Federation, the World Health Organization (WHO) and the websites of Ministries of Health of all African countries. To ensure that we did not overlook any potential informants, we sought the assistance of RHD colleagues to identify potential study participants. At the end of each interview, we also requested that participants refer us to other potential participants and share the study details.

Recruitment strategy

Recruitment took place concurrently with data collection, from August 2019 to June 2021, using email, text messages and direct person-to-person invitations. Flyers were also distributed at conferences to attract potential participants otherwise unknown to us.

Email and text message invitations

Potential participants received an email invitation with a brief information sheet. Those who agreed to participate received consent forms and logistics information in advance. A maximum of two reminder emails were sent to non-responders. Furthermore, text messages were used to contact those we understood did not have easy access to email.

Direct person-to-person invitations and flyers

At the 2019 Pan-African Society of Cardiology (PASCAR) conference in Sandton, South Africa, we distributed flyers containing the study information to attract potential participants. Those who expressed interest were given the study information sheet and the consent form. Following up with potential participants who had not responded to the recruitment emails at the conference was also initiated.

Study context

Table 1-A1 describes each country’s healthcare, socioeconomic and political context in detail. The following is a brief overview: Cameroon, Namibia, South Africa, Tanzania and Zambia are middle-income countries, while Malawi, Rwanda, Sudan and Uganda are low-income countries.¹⁵ The estimated population varied among the included countries, with Tanzania having the highest population of 67.4 million and Namibia having the lowest population of only 2.6 million.¹⁵ Security and political challenges in Cameroon and Sudan, respectively, have displaced over a million people. The seven other countries are politically stable. Poverty is prevalent across all countries, especially in rural areas. Sudan has the highest poverty rate at 64%. There is also significant wealth inequality concentrated in urban areas. South Africa has the highest wealth inequalities. Public sector services provide free or subsidised healthcare to the majority across all countries, while the private sector caters to those with insurance or who can afford to pay.^{15,16,17,18,19,20}

Data collection methods

Data were collected from September 2019 to June 2021. Thirty-one interviews were conducted in person or over the phone with participants from nine African countries. H.M., a female with a master’s degree in public health, conducted all interviews. To complement the qualitative methods lectures from the master’s degree training, she received additional qualitative methods training and supervision from K.D., a senior social scientist. The telephonic methods offered a cost-effective and safe alternative to in-person interviews, particularly during the coronavirus disease 2019 (COVID-19) pandemic. Table 1 contains details regarding the participants and interviews.

At the start of each interview, we shared the purpose of the interview, allowed participants to ask questions about the research and procedure and obtained participants’ permission to audio-record the interviews for accurate data capture. The interviews followed a semi-structured guide created by H.M., which allowed for questioning and probing while staying within the study’s parameters. Follow-up questions were asked to clarify assumptions and gaps in the evolving dataset. Although some participants did not have English as their first language, they all used it professionally. Throughout data collection, H.M. maintained detailed fieldnotes.

Data analysis

Preparing the data for analysis

The interviews were transcribed verbatim from audio recordings. The first 10 interviews were transcribed independently by a professional transcriber and H.M. They then compared and discussed each transcription to ensure consistency. H.M. transcribed the remaining 21 interviews independently. H.M. reviewed all transcripts for accuracy by listening to the audio and reading the transcripts, making any necessary changes.

Data familiarisation and immersion

Data analysis began as soon as the transcript was complete, while the data were still being collected. To fully understand the information and thoughts expressed by the participants, H.M. read each transcript multiple times, with annotations added during each reading. Once all interviews were complete, H.M. reviewed the transcripts and annotations to gain a comprehensive understanding of the entire dataset. H.M. also revisited memos and field notes to consider any issues and reflections arising from the data collection process.

Analysis

Participants were asked questions related to both study objectives. Objective one’s findings were based on 31 in-depth interviews. At the same time, 23 transcripts were analysed for objective two, as some patients and teachers self-reported a limited understanding of health policymaking.

The analysis adopted an inductive thematic approach rather than a predefined framework. This allowed for the discovery of new codes and themes within the collected data, ensuring that the codes, categories and themes were relevant and best suited to the data. We outline the process as follows:

Coding

H.M. identified segments relevant to the research objectives from each transcript and assigned them a descriptive code. The codes were continuously refined by comparing segments across transcripts and discussing with K.D. These discussions served as a reliability check for interpreting the data. The coding process ended when all transcripts had been coded. The coding was performed on the actual transcripts to make the process more manageable and easier to reference.

Categorisation

Codes with similar meanings were grouped into categories, and sub-categories were added in some cases, ensuring each code was only categorised once. The process continued until all codes for all transcripts were assigned to a category, and no new category emerged. The same iterative and comparative process was employed for coding.

Themes

We developed a visual framework grounded in the data, turning the main categories into themes. This served as an explanatory model of our early immersive understanding of the data. The framework offered a map of connections between categories to identify the main themes. This process stage went beyond just describing the data; it involved interpreting and explaining the phenomenon under investigation by triangulating it. In other words, we looked at the whole picture, based on participants’ accounts individually and in relation to each other, as well as our understanding of their health systems contexts and the delivery and receipt of RHD care. We then sorted quotes from the interview data according to the categories and themes contained in the model. We continuously reviewed the themes to maintain clarity and distinctiveness by reading the data extracts and quotes. The themes were evaluated to ensure each had sufficient data (not too narrow or too broad). If a theme appeared too broad and included too many categories, we explored the possibility of creating sub-themes. Once the sorting process was completed, we then documented the findings, thus narratively reporting our interpretation of the data. The data were analysed manually; no software was used. The analysis was carried out by H.M. and supervised by K.D.

Reflexivity

The team is made up of researchers based in South Africa. The study is part of the PhD thesis of the first author, H.M. The thesis is built around the development of a scorecard to track the implementation of the resolution on RHD in African countries. The team of supervisors, who are also the authors, includes L.Z., a cardiologist and senior public health specialist who played a crucial role in developing the resolution on RHD. M.E., an epidemiologist dedicated to eradicating RHD through vaccine development. K.D., a social scientist and senior researcher in health policy and systems research.

H.M. collected the data and conducted the analysis with support from K.D. L.Z. and M.E. were not directly involved in data collection or analysis, although they were kept apprised of the process. However, the findings were discussed within the team, which included L.Z. and M.E. By leveraging our collective and individual experiences in methodology and content, we brought a diverse range of perspectives to these discussions. The team remained mindful of our biases and allocated time to address these viewpoints, especially when interpreting the findings. Through these discussions, we helped each other minimise the risk of misinterpreting the results. Although L.Z. and M.E. are long-time advocates for improved RHD, they had no vested interest in influencing the outcome of the findings, as they too seek to understand the policy and treatment context in multiple African settings. For them, objective data are needed for planning future interventions. However, their insider experience helped clarify the meaning of what participants were expressing and shaped our understanding of how the findings might be applicable to African settings. K.D., as an outsider to the world of RHD, was able to stand apart from it, focusing on the trustworthiness and rigour of the methods, and brought a health policy and systems research lens that enabled viewing the data from a macro-perspective.

Rigour

Credibility, transferability, dependability and confirmability are the four components used to ensure the trustworthiness of this research.²¹

All coding and theme changes are tracked to ensure the credibility and reliability of the research findings. The coding and themes were confirmed in numerous discussions with K.D. The sampling techniques in this research are explained in detail to help the reader evaluate the applicability of the results to other situations. Furthermore, the findings are compared to those of similar studies, so that they can be viewed in the context of similar settings, providing readers with a more comprehensive understanding of the topic. A transparent and detailed report of the analysis is provided to enable the reader to independently verify the accuracy of the findings. The findings also incorporated quotations to enable the reader to confirm the interpretation of the findings. The data are triangulated and reflexivity is used to show how biases and preconceptions were addressed to limit their impact on the results. Where appropriate, we confirmed our interpretation of the data with participants.

Reaffirming consent

All participants provided consent to participate. Participants were given information and a consent form at recruitment and again 2 days before the interview. Participants who did not have email received a text message. However, those recruited at the PASCAR conference received the information and form on the recruitment and interview day. All participants either signed a consent form or provided verbal consent, which was recorded. Participants were informed of potential identifiability because of the small RHD community size and the right to withdraw at any time before publication. Participants were also informed that participation is voluntary and without any compensation, either monetary or non-monetary, for taking part in the study. No participants withdrew.

However, it is possible that some participants may have agreed to participate in the context of an ongoing collegial relationship with L.Z. and M.E., which they may hope to continue (i.e. subtle non-monetary influence). We also recognise that power dynamics may have influenced some participants. Those recruited at the PASCAR conference may have felt compelled to agree to participate in RHD research activities. In addition, some patients may have agreed with the expectation of receiving healthcare based on their past experiences of receiving care as part of RHD research.

Privacy and confidentiality

All face-to-face interviews were in private locations, such as participants’ offices or ours. At the PASCAR conference, a secluded area was used for the interviews. The phone interviews were conducted in a private office. We used Microsoft Teams and WhatsApp, which have end-to-end encryption, to secure communication, and Microsoft Teams prevents unauthorised access.

All study data are stored on a password-protected computer and cloud-based storage. Only the study group can access it. Anonymity is maintained by replacing personal identifiers with codes during the write-up.

Reporting

The consolidated criteria for reporting qualitative research guidelines were followed to ensure comprehensive reporting.²²

Ethical considerations

Ethical clearance to conduct this study was obtained from the University of Cape Town Faculty of Health Sciences Research Ethics Committee (Ref: 420_2019).

Results

Between September 2019 and December 2021, we conducted 31 in-depth interviews with healthcare providers, researchers, policymakers, programme managers, patients, technical advisors and teachers working or have received RHD services in nine African countries. The research findings are presented in two sections, each corresponding to one of the study objectives. The data are sorted based on the health system issues identified during the research.

Objective 1

The data suggest that inadequate community awareness of RHD, financial constraints, distance to healthcare facilities, unavailability of diagnostic technologies and medicines and low knowledge of RHD among nurses have influenced the diagnosis and treatment of strep A throat infection, ARF and RHD. Furthermore, low health literacy on surgery, unaffordability and distances to healthcare facilities impact access to surgery.

Factors affecting the diagnosis of strep A throat infection, acute rheumatic fever and rheumatic heart disease

Inadequate community awareness of rheumatic heart disease: Low public awareness of the connection between strep A throat infection and RHD, combined with the fact that strep A throat infection can resolve on its own, leads to fewer people seeking diagnosis and care, according to all participants. Patients from South Africa (ID#13, 14), Namibia (ID#8, 9) and Uganda (ID#21, 22) shared that they did not seek medical attention for their throat infections until they were diagnosed with RHD. Similarly, participants believed the main reason people do not seek diagnostic services for ARF and RHD is low public awareness of RHD. A Zambian project manager (ID#28) and Ugandan nurses and teachers (ID#19–21, 23, 26) shared their experiences of school RHD screening projects they had conducted. They found that parents were reluctant to take children for confirmatory tests after positive screenings, as initial ARF and early RHD symptoms are often absent:

‘We sometimes experienced challenges from parents. They had a child who is well, out and playing. We screen them and find that they have borderline RHD. We ask them to bring the child to the hospital. They say no, my child is okay. I think they lack information on this disease.’ (ID#28, Zambia, Program manager)

Distance to healthcare facilities: Geographic barriers affected some patients’ decisions to seek diagnosis for strep A throat infection and ARF in Sudan and Zambia. Cardiologists from Sudan (ID#15) and Zambia (ID#27) observed that there are few PHC facilities in rural areas, with those available offering fewer services than urban centres. They believe this scarcity discourages treatment-seeking. Conversely, patients from Namibia (ID#8, 9), South Africa (ID#13, 14) and Uganda (ID#21, 22) said distance did not prevent care access, as PHC facilities are widely available in both rural and urban areas.

Regarding care for ARF and RHD diagnostic services, all RHD participants reported experiencing geographic barriers because of the limited availability of diagnostic equipment and skilled nurses in PHC facilities. As a result, diagnostic services are mainly available in urban hospitals, creating access issues for both rural and urban patients who require transportation.

Financial constraints: Fees for strep A throat infection diagnosis hindered access in Cameroon, Rwanda, Tanzania and Uganda. Cameroon cardiologists (ID#1, 2) noticed that private tertiary clinics were the main providers. In Tanzania, a programme manager (ID#16) said the government offers free PHC to children under five, thus excluding children aged 5–15 years who need a diagnosis. In Rwanda, public clinics charge 10% of the service cost, roughly equivalent to $2.00, which a policymaker (ID#10) said is unaffordable, especially for rural residents paid in goods rather than money:

‘They live on less than $750 per year, and much of that is never in paper money. It’s through barter. They may work for a farmer and get paid with eggs, cooking oil and one meal. For them to get paper money to send a child to seek healthcare is a challenge.’ (ID#10, Rwanda, Policymaker)

Namibia, South Africa and Sudan were exceptions. Cardiologists from Sudan (ID#15) and Zambia (ID#27), and patients from Namibia (ID#8, 9) and South Africa (ID#13, 14), reported no user fees for strep A throat infection diagnostics.

Availability of diagnostic technologies and primary healthcare nurses’ knowledge

Clinical guidelines: Clinical guidelines are essential for diagnosing correctly. However, Cameroon cardiologists (ID#1, 2) and a Namibian nurse (ID#9) reported that they have yet to observe clinical guidelines in their PHC facilities that establish a connection between strep A throat infection, ARF and RHD. The participants said they mostly observed clinical guidelines for malaria, tuberculosis (TB) and human immunodeficiency virus (HIV) and attributed this availability to these diseases receiving heavy funding from the government and international funding.

In contrast, two Namibian nurses (ID#7, 8) reported the availability of clinical guidelines that include RHD and its related conditions in their PHC facilities. Similarly, cardiologists and nurses observed clinical guidelines in PHC facilities in South Africa, Sudan, Uganda and Zambia (ID#11, 15–17, 21, 27). However, participants expressed concern that clinical guidelines are not always appropriately used for diagnosing RHD and related illnesses. Cardiologists from Malawi (ID#3), Uganda (ID#17, 18) and Zambia (ID#27) and Uganda nurses (ID#19, 20) believed that nurses often rely on experience rather than guidelines when diagnosing patients. Furthermore, even when nurses attempt to follow clinical guidelines, their limited understanding of RHD impairs their capacity to diagnose the disease accurately. These participants found that when patients present with a sore throat, PHC nurses tend to screen, examine and treat for common conditions, such as viral tonsillitis. In addition, in regions with high malaria prevalence, PHC nurses frequently mistake ARF symptoms for malaria:

‘Clinical guidelines spells how to diagnose and treat pharyngitis and ARF. But lower levels will not recognise ARF because it presents like malaria.’ (ID#17, Uganda, Cardiologist)

Echocardiogram machines: Echocardiogram machines are essential for diagnosing ARF and RHD, and their presence in PHC facilities can support early detection and referral for confirmatory diagnosis at tertiary hospitals. However, participants from all countries have reported a shortage of echocardiogram machines in PHC and raised concerns about this scarcity. Although some cardiologists from Malawi (ID#6), Namibia (ID#7) and Uganda (ID#19), and some technical advisors (ID#30, 31), recognised the importance of these machines in PHC settings, they worry that availing them in PHC without adequately trained PHC nurses could be a misallocation of resources:

‘[T]he diagnostics are not available. For borderline RHD, you want to do an echo, but I think in the whole country only the national referral hospital and private hospitals have it.’ (ID#19, Uganda, Nurse)

Factors affecting treatment of acute rheumatic fever and rheumatic heart disease

Availability of penicillin: Penicillin is available in all healthcare levels across Cameroon, Malawi, South Africa, Sudan, Uganda and Zambia, as reported by cardiologists (ID#1–3, 11, 15–17) and Ugandan nurses (ID#22–23). Participants linked this availability to its inclusion in their national essential drug lists and international funding for diseases requiring penicillin, such as sexually transmitted infections. In all countries, participants found occasional shortages of penicillin, mainly because of insufficient government funding to meet demand. Conversely, Namibian RHD patients (ID#8, 9) and a cardiologist (ID#6) reported ongoing penicillin shortages in Namibia but were uncertain about their causes. A Namibian patient (ID#9) shared that they had missed treatment for months because penicillin was unavailable in both private and public healthcare facilities:

‘I’ll find myself going for three or four months without taking my prophylaxis. We most of the time running out of stock for penicillin. That includes the private sector, sometimes you go to all the pharmacies in town and into nearby towns, and you won’t find it.’ (ID#9, Namibia, RHD patient)

Financial constraints and the distance to healthcare facilities: User fees for accessing penicillin created barriers in Cameroon, Rwanda, Tanzania and Uganda. Cardiologists from Sudan (ID#15) and Zambia (ID#27) stated that in rural areas, patients face difficulties accessing injections because of the shortage of certified PHC nurses and the distance to urban tertiary facilities:

‘We have one reference centre in the area, 400 kms. The village people complain that they must go for long distances to find somebody who can inject.’ (ID#15, Sudan, Cardiologist)

Surgery as a result of rheumatic heart disease

Low health literacy on surgery: Low literacy on surgery leads to patients delaying surgery. South African patients (ID#13, 14) shared that they had postponed their surgery until their symptoms got worse because of concerns about the personal and social consequences of surgery. For instance, a patient who was 18 years old at the time feared that RHD surgery could cause infertility. Another participant was afraid of dying because of the surgery, which would leave her young children orphaned:

‘At the time, my kids were three and six. I didn’t want them to be orphans. I went in surgery years later, when they said my lungs are going to start taking in water.’ (ID#14, South Africa, RHD patient)

In contrast, patients who were nurses from Namibia (ID#8, 9) and Uganda (ID#21) stated that although they were afraid of the surgery, they never postponed it because they understood the importance of the procedure in saving their lives and enhancing their quality of life.

Affordability of surgery: In Namibia, South Africa, Tanzania and Zambia, all RHD patients can access free surgery at public facilities (ID#6–9, 11–14, 16, 28). In Sudan, Uganda and Rwanda, a limited number of RHD patients can also access free surgery. One missionary hospital in Sudan provides free RHD surgery and has expanded its services to Uganda through regional cooperation. Ugandan patients have also received free surgery from visiting surgeons from high-resource settings, as reported by a Ugandan cardiologist (ID#17) and nurse (ID#19). In Rwanda, visiting surgeons are the only surgical option available, as stated by a Rwandan policymaker (ID#10). Conversely, many RHD patients in Cameroon, Sudan and Uganda are unable to access necessary surgical treatments because of high costs. In Cameroon, such surgeries are only available in private, for-profit hospitals. In Sudan and Uganda, government hospitals offer some coverage; however, the remaining co-payment remains unaffordable for most, as reported by a Sudanese cardiologist (ID#15) and Ugandan cardiologists (ID#17, 18).

Financial barriers also include non-surgical costs. In Malawi, the government covers the costs of surgery, including flights and accommodation, for patients travelling to India for treatment because of inadequate local surgical facilities. However, a Malawian cardiologist (ID#3) found that this option is often unfeasible because many Malawians face financial hardships and cannot afford the passport required for travel:

‘The government will pay for surgery and transport to India. They don’t pay for passports, … most Malawians can’t afford a passport.’ (ID#3, Malawi, Cardiologist)

Geographic distance to healthcare facilities: Participants in the study recognised post-operation care as a barrier to increasing surgical volume in Malawi, Sudan and Uganda. According to cardiologists from these countries (ID#3, 15, 16, 18) and a Ugandan nurse (ID#19) patients living far from hospitals and unable to attend post-operative care are often ineligible for free surgeries provided by missionary hospitals. While this rule aims to ensure patient safety and optimise limited surgical capacity, it inadvertently excludes rural patients, who struggle to access post-operative care, mostly available in urban hospitals:

‘Missionary hospital is doing free surgery; they won’t operate on patients who are living very far. They admit that if the patients admits that they cannot do regular follow-up and do international normalised ratio [INR], then the patient is announced to be not available.’ (ID#15, Sudan, Cardiologist)

A cardiologist from Sudan (ID#15) suggested a potential solution to this problem, which involves establishing a network of PHC providers in remote districts to deliver post-operative care. Different methods can be used for these providers to communicate with cardiologists. In addition, managing international normalised ratio [INR] levels can be performed through point-of-care INR testing.

Objective 2

The data show that policy decisions to strengthen or establish programmes for preventing and controlling RHD are influenced by the low priority of RHD in health agendas, the need for advocacy to raise the priority of RHD in health agendas, data to justify the allocation of resources to RHD, impact of political contexts on country agendas and the influence of international funding and programmes on country health priorities.

Priority of rheumatic heart disease in health agendas

Rheumatic heart disease is not a priority on the health agendas of all nine countries, as perceived by participants across these countries. Some nurses from Namibia (ID#7, 9) and Uganda (ID#19) attribute this to a lack of RHD awareness among health ministers. However, all cardiologists and technical advisors asserted that health ministers are aware of RHD as they have been engaging with them for years. They reported that health ministers have expressed concerns about RHD, which has led to positive developments, including the establishment of national advisory committees for RHD prevention and control in Namibia, Sudan, Uganda and Zambia. These committees include participation from the Ministry of Health.

The participants shared that despite the health ministers’ apparent interest in ideas presented for RHD prevention and control programmes, the human capability was limited to establish a stand-alone programme for a disease they do not consider a priority when compared to other diseases. Additionally, a specific budget allocation for RHD would be necessary to implement these programmes. However, health ministers have yet to commit to this allocation. Currently, RHD is funded through non-communicable diseases (NCDs) or cardiovascular disease programmes, and a small portion of dedicated RHD funding for silos projects comes from international donors:

‘When I first met with the ministers it was kind of like “oh what is rheumatic heart disease.” We engaged with them; it opened their eyes a little bit. They have been supportive in talking but not in action and funding is mainly external.’ (ID#3, Malawi, Cardiologist)

The exception was in Cameroon, where cardiologists (ID#1, 2) stated that the private sector has been the primary source of support for all initiatives related to RHD, with minimal support from the government.

Advocacy to raise the awareness of rheumatic heart disease in health agendas

All participants mentioned that there is currently not enough advocacy to raise awareness about RHD in health agendas. They suggested that cardiologists and RHD patient groups should lead advocacy efforts. However, technical advisors (ID#29, 31) expressed concerns about the ability of these groups to lead advocacy efforts effectively. They believed that both groups needed to understand the political landscape better and improve advocacy skills to effectively advocate for the inclusion of RHD in the broader health agenda:

‘They do not have the strongest understanding of the political economy and how to really land the messages that need to make change with decision-makers. I say that they’re not as connected with the wider health agendas.’ (ID#30, Global, Technical advisor)

Participants held diverse views on who should lead advocacy efforts. All programme managers, researchers and nurses believed that cardiologists are the most suitable leaders, as they possess an in-depth understanding of the disease. A South African researcher (ID#12) noticed that medical professionals possess greater influence in healthcare decision-making than non-medical experts, which could shape advocacy initiatives. Conversely, cardiologists from Namibia (ID#6) and Uganda (ID#18), along with technical advisors (ID#30, 31), highlighted the challenge of their busy clinical schedules, which limit their capacity to act as advocates:

‘There is a lot of power in health care setting, in who manages and who sits on top and very often are medical doctors. People like I, we have quite a bit of a voice in some of those demands, but I am aware of the limits of my voice.’ (ID#12, Researcher, South Africa)

Conversely, some cardiologists from Namibia (ID# 6) and Uganda (ID# 17) argued that patients should lead advocacy because of their experience with RHD. The Namibian cardiologist (ID#6) said patient advocacy groups are powerful advocates, citing HIV patient advocates in South Africa, who they believe have driven positive changes in the country’s HIV situation. However, cardiologists, nurses and programme managers who previously worked with patient support groups in Namibia (ID#12), Uganda (ID#17–21) and Zambia (ID#27, 28) expressed concerns about the financial difficulties faced by RHD patients wishing to engage in advocacy. They found the challenge of securing funding for RHD patient group activities, as health ministers often do not see them as vital parts of the healthcare system. All the patient support groups formed with research funds disbanded after projects ended because of a lack of funding. This raises doubts about their long-term sustainability:

‘Patient groups once trained they can do advocacy work well. But patient support groups are not in the health system. It will be difficult to justify a budget line for patient support groups to do advocacy when you already have a limited budget for drugs and salary.’ (ID#17, Uganda, Cardiologist)

Data to confirm the need for prioritising rheumatic heart disease

Health ministers across countries lacked strong motivation to prioritise RHD amid competing health concerns like TB, HIV and maternal and child health, as reported by all participants. Participants spoke to the value of quality routine health information, which influenced health ministers in justifying the allocation of resources to national programmes.

All Ugandan cardiologists (ID#17, 18) and nurses (ID#19–21) reported having access to comprehensive and accurate routine RHD information. These data, however, were only available from the Uganda Heart Institute, a governmental cardiovascular hospital. In contrast, in other countries, they noted difficulty obtaining complete and accurate routine RHD information from all levels of care:

‘The data is not captured or is partially captured. It makes it very difficult to estimate the prevalence or have proper information.’ (ID#7, Namibia, Nurse)

The general lack of knowledge among PHC nurses made it challenging to recognise and accurately capture RHD in lower-level health information systems (HISs). This was the perception among cardiologists and nurses from Malawi (ID#3), Namibia (ID#6–8) and Uganda (ID#17, 19), and policymakers from Malawi (ID#4, 5) and Rwanda (ID#10). Another obstacle to comprehensive data identified by a nurse in Namibia (ID#7) is that in higher levels of healthcare, RHD is often misclassified as other cardiovascular diseases in the HIS. This could be because many RHD patients are present to care when they are experiencing heart failure. Participants from Rwanda (ID#10) and Uganda (ID#11) found these data collection obstacles particularly concerning, as they were confident that their countries have quality health information structures in place for all diseases, including RHD:

‘The HIS is good; all the numbers are well captured by the time they get to the ministry including information entered from the lowest facility. The forms have a section for RHD, but there’s usually zero reporting on that because no one really know it.’ (ID#19, Uganda, Nurse)

Participants from Cameroon (ID#1), Namibia (ID#6, 7), Rwanda (ID#10) and Zambia (ID#28) reported that funding is vital in data collection. They highlighted the differences in data collected for RHD and more highly funded diseases such as HIV and TB. The participants shared that donor funding enabled high-quality data collection, which demonstrates the severity of the problem for funded diseases, leading to increased funding for addressing these diseases. In contrast, RHD programmes experience limited funding because of insufficient data collection, which fails to illustrate the full extent of the problem within each country:

‘TB and HIV are highly funded, in their specific project, they have funds for data collection and that makes the data collection in those conditions very accurate. But in the HIS, you struggle to pick out specific presentations of RHD.’ (ID#7, Namibia, Nurse)

Influence of political contexts to country agendas

Participants from various countries discussed the impact of their country’s political context, where factors outside the health system influence health agendas. A researcher from South Africa (ID#12) found that because of a general lack of political will to address the challenges faced by poor and marginalised communities in their countries, RHD is often overlooked in political spaces:

‘If RHD is the ultimate poverty related disease, to eradicate RHD you need to have a commitment to the welfare of the poor. In an environment where there has been little commitment to the poor? I can’t see that political will.’ (ID#12, South Africa, Researcher)

In Rwanda, the job security of health ministers was tied to their performance outcomes. A policymaker (ID#10) suggested that most health ministers were unwilling to investigate the burden of RHD and raise its priority because they were concerned that they would be unable to address what they found if the overall system remained weak. The health ministers were concerned that their inability to address the problem would negatively impact their political prospects. Only one health minister was willing to do an investigation over a decade ago, and the findings showed a small burden of disease, but raising awareness never became a priority for her:

‘Huge challenge for creating awareness, it must come from health ministers who are willing to step out and say, this is a major problem. But, if they come out and say that, then the government will say, if you cannot fix this, you’re incompetent, we will replace you. They want the whole system to be improved before they announced it.’ (ID#10, Rwanda, Policymaker)

Political instability caused delays in programme development in Sudan and Rwanda. A cardiologist from Sudan (ID#15) and a policymaker from Rwanda (ID#10) reported that political instability had delayed efforts to develop national and local RHD programmes in Sudan and Rwanda, respectively. Rwanda policymaker (ID#10) stated that the 1990–1994 Rwandan Civil War and genocide had a lasting impact, making governments suspicious of gatherings. As a result, the participant’s non-governmental organisation only received government clearance to start local RHD programmes such as adherence clubs and support groups in 2019 after seeking approval in the early 2000s. Sudan cardiologist (ID#15) said that the 2019 protests for economic change and the forced resignation of President Omar al-Bashir in Sudan resulted in a new government. According to the participant, the political uncertainty in authority delayed discussions with the health minister regarding national RHD programmes:

‘In Sudan we had instability for the last 9 months. A lot of killings. There was nothing done in those months. But from last May until December [2020] there were movements towards establishing a department that will include RHD.’ (ID#15, Sudan, Cardiologist)

Influence of international funding

International stakeholders have played a significant role in setting healthcare priorities in the country through their funding, according to a Rwanda policymaker (ID#10). They shared that the country’s health system heavily depends on international funding. Although this funding benefits the entire system, it is mainly allocated to some infectious diseases and has strict usage conditions. As a result, the Rwandan health ministry tends to prioritise infectious diseases:

‘Rwanda, to receive the funding through USAID, which their budget is desperately dependent on, they must stick with the categories that the funding is accepted. USAID restricts their funding to TB, HIV, and malaria and doesn’t include RHD.’ (ID#10, Rwanda, Policymaker)

The participant also believed that the health ministry influences which disease programmes are considered by international donors and suggested that RHD is not considered because ministers have not publicly recognised it as a problem in Rwanda:

‘Rwanda must acknowledge RHD very publicly. But Rwanda says it’s not a major problem. So, it has impacted on international funding for RHD.’ (ID#10, Rwanda, Policymaker)

Influence of the international programmes

Countries trust international organisations such as the WHO, and their recommendations play an important role in shaping health programmes in countries. Policymakers from Malawi (ID# 4, 5), cardiologists from Malawi (ID#3), Sudan (ID#15) and Uganda (ID#17), and all technical advisors believed that health ministers are more likely to follow programme recommendations from the WHO when establishing and implementing RHD programmes at the national and local levels. A cardiologist from Sudan (ID#15) shared that the last national RHD programme implemented in the country was in collaboration with the WHO and ended in the early 2000s when the WHO ended their support:

‘Since the WHO, RHD programme in Sudan ended before 2000. There is nobody looking at RHD. Nobody will listen to you, unless an international organisation or WHO comes with recommendations.’ (ID#15, Sudan, Cardiologist)

Policymakers from Malawi (ID#4, 5) and cardiologists from Malawi (ID#3) and Sudan (ID#15) shared that their respective countries are currently implementing the WHO programme called the Package of Essential Non-communicable Disease Interventions PLUS (PEN-PLUS). The PEN-Plus aims to treat more severe NCDs, such as RHD, through integrated outpatient services at first-level hospitals.²³ A policymaker from Malawi (ID#4) shared that the NCD department will be leveraging the WHO PLEN-PLUS to advocate for implementation and funding of RHD programmes across districts in Malawi and believed that RHD programmes can only be addressed through this programme:

‘The NCD unit, we are trying to have evidence-based linkages pertaining to RHD interventions that we’re putting forward within the selected districts and find more funding for RHD. This can only work with the WHO PEN-Plus.’ (ID#4, Malawi, Policymaker)

Another significant influence of the WHO is technical assistance to countries, according to a Cameroon cardiologist (ID#2) and a Tanzanian programme manager (ID#16). However, the authority of the WHO is limited to countries that requested their assistance, as they do not have the power to force or implement decisions on behalf of governments. These participants expressed concern that their respective countries would not benefit from this technical assistance, as their health ministers do not recognise RHD as a problem.

Discussion

This qualitative study provides insight into the health system factors that affect the delivery of RHD prevention and treatment interventions in nine African countries: Cameroon, Malawi, Namibia, Rwanda, South Africa, Sudan, Tanzania, Uganda and Zambia.

The findings suggest that the diagnosis and treatment of strep A throat infection, ARF and RHD are hindered by inadequate public knowledge of RHD, financial constraints and geographical distances to care, the unavailability of diagnostic tools at PHC facilities and a scarcity of PHC nurses knowledgeable on RHD. Furthermore, access to RHD surgery is hindered by low public literacy on surgery, unaffordability and geographical distance to surgery and post-operative care.

The scarcity of PHC nurses knowledgeable in RHD hinders access to services for diagnosis, treatment and post-operative care at the community level. For instance, PHC nurses in Namibia, Uganda and Zambia struggle to diagnose RHD despite the availability of clinical guidelines. In addition, the absence of nurses skilled to provide post-operative care at PHC facilities prevents some Malawi, Sudan and Uganda patients from accessing free surgery. These challenges are consistent with previous studies, highlighting the difficulties faced by health systems in LMICs in providing care for RHD, especially for marginalised groups in areas with limited advanced healthcare services.^8,9,24

The results emphasise the importance of training PHC nurses to deliver various RHD services at the PHC level. Pilot studies in Malawi and Rwanda have demonstrated the possibility of decentralising RHD services from advanced care levels to primary and district healthcare services by training mid-level and strengthening the health system with a coordinated investment in facilities to ensure the availability of equipment, medications and human resources.^25,26

The results indicate that penicillin is generally available in healthcare facilities, except for Namibia. These findings are consistent with a survey in Uganda from 2018 to 2019.⁹ However, they contradict a 2019 study that found a 30% shortage of penicillin in 14 African countries, including six in our study.²⁷ Similarly, a study from 2014 to 2016 reported that 41% of 81 countries in the African region faced penicillin shortages.²⁸ The variations in findings may be because of different methods. Cross-sectional surveys offer a snapshot view, while qualitative methods provide a narrative view of a select healthcare facilities. Our study suggests that demand fluctuations, rather than persistent supply chain issues, cause occasional penicillin shortages. Moreover, differences in penicillin availability indicate disparities between urban and rural healthcare facilities. Most participants shared perspectives based on experiences with urban healthcare facilities, which have better resources than rural ones.

These findings indicate that adherence is affected by PHC nurses’ limited RHD knowledge, user fees and travel costs and not the availability of penicillin. However, it is important to recognise that the demand for penicillin may be lower because of treatment barriers. In addition, international donors in some countries supplement the penicillin supply through programme funding for diseases other than RHD. Therefore, efforts to improve RHD prevention and treatment must consider the potential impact of increased demand for ARF and RHD treatment on availability.

The study also investigated the factors that influence health ministers’ decisions to establish or enhance prevention and control programmes for ARF and RHD. The decisions of health ministers are influenced by the power of different stakeholders in health priority setting and programme directions, the availability of data to justify the allocation of specific resources to RHD and the context in which policymakers operate. These findings align with other research that shows that health decision-making, planning and policies are influenced by the interrelationship between stakeholders, the context and the understanding of the disease, including presented solutions.^10,29

The findings of this study show that international stakeholders have presented opportunities and challenges for RHD programmes. Recently, countries such as Malawi and Sudan have expressed an interest in addressing RHD, marking a significant shift from the previous neglect. This change is attributed to the advocacy efforts of the WHO, urging countries to tackle RHD through the resolution and the WHO PEN-PLUS.^11,23 On the other hand, international stakeholders have presented challenges for RHD programmes in Rwanda. With most healthcare funding from donors, health ministers prioritise diseases that receive external funding, such as infectious diseases. While donor funding contributes to other programmes, such as the case of penicillin noted above, this focus on specific disease outcomes often overlooks strengthening the broader healthcare system. Consequently, diseases such as RHD, which receive less funding, often have weaker programmes. Similarly, a study on stakeholder perceptions of priority setting for NCDs in Kenya found that local stakeholders believed that donors’ priorities sometimes do not align with the country’s NCD control priorities, hindering the national NCD priority-setting process.³⁰

The results show that health ministers can influence funders’ priorities if they view the issue as a priority. Therefore, this emphasises the need for continuous advocacy to raise the priority of national and global agendas. However, RHD advocacy encounters challenges because of leadership gaps. Rheumatic heart disease disproportionately affects politically weak and impoverished groups who lack the knowledge and influence to persuade donors and policymakers. Cardiologists, the primary advocates, often lack advocacy skills. These findings are consistent with Shawar and Shifman’s results on factors affecting the generation of global priority for RHD.¹⁰

These findings on the diagnosis and treatment of GAS, ARF and RHD, including RHD surgery and policy, are relevant and applicable to RHD programmes in other RHD-endemic countries, which are mainly LMICs. An exception is low-resource groups in HICs such as the United States and Australia.

Strengths and limitations

The strengths of this study are that we explored the topic from various stakeholder perspectives and different countries, providing rich, triangulated data.²¹ In addition, our methods allowed for a description of trends and variations across countries that would have gone unnoticed if only one group and one country had been interviewed. Furthermore, measures including credibility, transferability, dependability and confirmability were taken to establish the trustworthiness of the study.

The study has limitations to consider. The broad view limited the deep examination of this topic within the different participant groups and countries. In addition, the presented findings may not fully represent the breadth of data obtained because of attempts to summarise data from different countries and diverse viewpoints. There are also gaps in the information presented regarding health policymaking and decision-making processes that affect RHD. This is because the study includes a limited number of policymakers, which did not allow us to reach data saturation. Policymakers have access to institutional information that other participants may not have. Recruiting policymakers from various countries proved challenging because of country-specific and complicated interview clearance protocols. Despite this, the interviewees provided valuable insights as they have directly or indirectly influenced the policymaking process through their roles. Additionally, the positionality of the researcher (H.M.) team may have influenced the data collection process. At the time of the study, H.M. held a junior position compared to many participants, including cardiologists, technical advisors and policymakers. This difference in status may have limited her ability to engage fully with the more senior individuals involved, potentially resulting in missed opportunities for deeper exploration, particularly when participants expressed views that deviated from the prevailing norms regarding RHD.

Conclusion

Our study showed that various health system factors, at service delivery and policy levels, are crucial in efficiently delivering RHD interventions in nine African countries. It also highlighted the interconnections between different healthcare system components and the importance of considering the entire system when implementing RHD programmes. Furthermore, the findings offer insight into the complex nature of health policymaking. Considering local and international stakeholders’ priorities and contextual factors is essential when prioritising RHD in national health agendas. This study provides a unique perspective compared to the numerous clinical and epidemiological studies on factors influencing RHD prevention and control in African countries. It can help strengthen programmes by offering insight into how individuals and groups at different health levels in various African countries might receive interventions.

To build on this knowledge, which focused on a meta-level analysis of health systems and policy, future studies could focus on country-level case studies that explore more closely the needs and expectations of both patients and healthcare providers regarding RHD. In addition, future research should examine the roles of international stakeholders in shaping health agendas for RHD at the country level, including identifying successes and challenges in securing adequate political support for the development and implementation of relevant RHD policies.

In conclusion, we offer some key considerations for policymakers. The government can improve the delivery of RHD services at the PHC level, including post-operative care, by funding targeted preclinical and post-clinical training programmes. These programmes should focus on improving knowledge and disease management skills related to RHD. In addition, advocacy efforts for RHD can be strengthened through collaborations between local governments, RHD-focused NGOs and civil society organisations. Policies that encourage patient participation in healthcare decisions are also essential, as they empower individuals living with RHD to have a voice in their own care.

Acknowledgements

The authors would like to thank Mr Jafes Pulle for his assistance with participant recruitment in Uganda. They also thank Dr Sara Cooper for providing methodological guidance during the conceptualisation of the study. In addition, the authors are thankful to Dr Emmanuel Mwosu for his valuable comments that helped improve the article.

This article is based on data from a larger study. Two related studies focusing on developing a scorecard to monitor the development of the implementation of the world health assembly resolution in African countries and have been published in the Internation Journal of Cardiology entitled ‘Understanding the local and international stakeholders in rheumatic heart disease field in Tanzania and Uganda: A systematic stakeholder mapping’ (https://doi.org/10.1016/j.ijcard.2022.01.030) and the Cardiovascular Journal of Africa entitled ‘How do we measure the implementation of the World Health Assembly resolution on rheumatic fever and rheumatic heart disease in African countries? Rationale and design of an evidence-based scorecard’ (https://doi.org/10.5830/CVJA-2021-015). This article addresses a distinct research question on health system factors influencing RHD prevention in African countries. Thereby, to develop context specific indicators for the scorecard.

The authors of this publication received research funding from the South African Medical Research Council (SAMRC) through its Health System Research Unit under the seed funding award for mid-career scientists. In addition, H.M. received research support from the University of Cape Town, Department of Paediatrics and Child Health. L.Z. also received support from the National Research Foundation of South Africa (NRFSA), as well as the United Kingdom (UK) Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement, via the African Research Leader Award (MR/S005242/1), which is developing products related to the research described in this publication. In addition, the authors serve as a consultant to the entity and receive compensation for these services. The terms of this arrangement have been reviewed and approved by the entities in accordance with its policy on objectivity in research.

H.M. was involved in conceptualisation, methodology, investigation, data analysis and preparing the article. L.Z. performed supervision, reviewing and editing. M.E. was responsible for supervision, reviewing and editing. K.D. performed training, supervision, methodology, data analysis, reviewing and editing.

The work reported here was made possible through funding by the SAMRC through its Health System Research Unit under the seed funding award for mid-career scientists, from funding received from the South African National Treasury. The content is the sole responsibility of the authors and does not necessarily represent the official views of the SAMRC. In addition, H.M. received research support from the University of Cape Town, Department of Paediatrics and Child Health. L.Z. also receives support from the NRFSA, as well as the UK MRC and the UK DFID under the MRC/DFID Concordat agreement, via the African Research Leader Award (MR/S005242/1).

The authors confirm that the data supporting the findings of this study are available within the article.

The views and opinions expressed in this article are those of the authors and are the product of professional research. They do not necessarily reflect the official policy or position of any affiliated institution, funder, agency or publisher. The authors are responsible for this article’s results, findings and content.

References