Care seeking and treatment for hepatitis C infection in Rwanda: A qualitative study of patient experiences

ABSTRACT

An estimated 71 million people live with hepatitis C virus (HCV) and without an effective vaccination, control efforts depend entirely on prevention, early diagnosis, and treatment with direct acting antiviral medication. The experiences of accessing care and treatment, as well as how HCV is locally perceived, are context specific and require an understanding of local epidemics. The objectives of this study were to explore the experiences and demand-side barriers for people with chronic HCV infection, as well as describe the social and cultural landscapes in which they experienced, managed, and perceived HCV in Rwanda. Eleven participants provided consent to participate and all completed two semi-structured interviews during treatment within a clinical trial. We identified four themes: (1) diagnosis and use of traditional medicine, (2) access and financial barriers, (3) complex social networks (4) proactivity in care-seeking. Results demonstrate the complex ways in which Rwandans understand HCV, utilise parallel health systems, activate social networks, and the importance of active agency in the opportunities and outcomes for their own health in the context of an early response to a major epidemic. Without recognising communities’ understanding and expectations, it is impossible to build a sustainable and successful public health response to HCV.

KEYWORDS:

• Hepatitis C
• DAA treatment
• patient experiences
• qualitative research
• Rwanda

Introduction

Viral hepatitis is one of the leading causes of death and disability worldwide, impacting both high and low income settings (Stanaway et al., 2016). An estimated 71 million people live with hepatitis C virus (HCV) globally and there is no effective vaccination, therefore HCV control efforts depend entirely on prevention programmes and early diagnosis and treatment of infected individuals (World Health Organization, 2017). The prevalence of HCV in sub-Saharan African countries is highly variable, with estimates ranging between 1.0% in Senegal to 14.7% in Egypt (Riou et al., 2016). The recent development of direct acting antiviral (DAA) therapy demonstrated that elimination of HCV is possible but requires an in-depth understanding of the local epidemics and patients’ experiences (Shimakawa et al., 2017). In many countries in Sub-Saharan Africa, access to DAA treatment is still limited, however, several countries are developing national guidelines for HCV diagnosis and treatment with DAA regimens (Smith et al., 2019).

Qualitative research conducted prior to the DAA era found that people living with HCV often faced stigma, lacked support in care-seeking and within personal and work relationships, and may have experienced a reduced quality of life (Dowsett et al., 2017). People with chronic HCV infection often experienced high levels of stress during the diagnosis period and a pronounced loss of social support following disclosure of HCV (Miller et al., 2012). After the introduction of DAAs, patients reported decreased perceptions of stigma and greater acceptance for disclosure to friends, family, and healthcare workers (Madden et al., 2018; Richmond et al., 2018; Wright et al., 2018). Yet, even in settings with high access to DAAs, eligible patients still reported a need for increased social support before and during treatment (Wright et al., 2018).

The qualitative literature related to the experiences of early symptoms, care-seeking, and HCV treatment remains mostly limited to high-income settings, often where knowledge, awareness, and access to social and clinical resources is high. The majority of these studies also focus within key demographics, (e.g. people who inject drugs (PWID), people co-infected with HIV) who may have access to key resources. There are limited qualitative studies regarding HCV care-seeking and DAA treatment experiences in sub-Saharan Africa (SSA).

We conducted a qualitative study using an ethnographic approach with a subset of participants undergoing DAA treatment in a clinical trial in Rwanda. The objectives of this study were to understand the experiences and demand-side barriers for patients with chronic HCV infection, as well as explore the social and cultural landscapes in which they experienced, managed, and perceived HCV.

Material and methods

Context

The HCV seroprevalence in Rwanda is estimated to be between 4 and 5% in the general population but higher in specific population groups (e.g. those with HIV, prisoners, over age 55) (Umutesi et al., 2019). Based on data collected during a national screening campaign in 2018, HCV risk factors were identified as being 65 or older, a history of traditional scarification or medical practices, and being widowed or separated (Makuza et al., 2019). The Rwanda Ministry of Health has taken several proactive steps regarding viral hepatitis, including implementing national guidelines for care and treatment in 2013 and more recently, establishing a national elimination plan for viral hepatitis by 2024 (Mbituyumuremyi et al., 2018; Umutesi et al., 2019). However, upon initiation of this study, testing and treatment were not covered by most health insurance programmes and averaged 75,000 RWF (91 USD¹) and 1 million RWF (1208 USD), respectively. By the end of the study, many insurance schemes in Rwanda were covering the majority of testing and treatment costs, and the national health insurance scheme was in the process of subsidising these costs as well.

Participants, recruitment, sampling

We recruited participants for the qualitative study from a prospective observational clinical study, Simplifying Hepatitis C Antiviral treatment in Rwanda for Elsewhere in the Developing World (SHARED) (ClinicalTrials.gov Identifier: NCT02964091). The study assessed the safety and efficacy of a 12-week regimen of sofosbuvir-ledipasvir for 300 adults with genotype 1 and 4 (Gupta et al., 2019). Recruitment took place at Rwanda Military Hospital in Kigali, Rwanda, from October 2016 to March 2018. At the time of recruitment, DAA treatments were limited in Rwanda and available at only four HCV treatment centres, which referred eligible participants to the study.

We used purposive sampling to select participants for the qualitative study based on survey data collected upon enrolment in the trial, and basic demographic characteristics such as age, gender, and region, in order to collect a broad range of experiences related to HCV care and treatment.

Data collection and analysis

Two research assistants (RAs) conducted the interviews with participants in the local language, Kinyarwanda. The interviews were audio recorded and transcribed by the RAs. A native Kinyarwanda-speaking certified translator used meaning-based translation for translation into English. We conducted the first interview at the trial site one week after initiation of treatment and the second interview at the participant’s home after completion of treatment but prior to the 24-week follow-up visit to determine treatment outcome. The second interview was held outside the clinic to de-centre the treatment/clinic experience and focus on the participant’s lived realities and social networks (Reynolds Whyte et al., 2013). Additionally, we engaged with participants at their regularly scheduled study visits to build rapport and obtain updates on their experiences between visits.

In the first interview, we used a semi-structured interview guide with open-ended questions including the following topics: general narrative regarding HCV, testing and diagnosis experiences, barriers and supports to care and treatment, and trial experiences. We used the responses from the first interview to map a pathway of the participants’ experiences on multiple levels spanning from individual/family levels to structural forces. We used the pathway at the second interview to verify responses from the first interview and to create follow-up questions related to their experiences, as well as asked additional questions related to perceptions of cure. After the home visit interview, we expanded and clarified the pathway for each participant and used the pathways and full transcripts in the analysis.

We used thematic analysis based on the six-step approach by Braun and Clarke (2006). We first used the pathways to create the initial process (or action) codes and then we applied the codes to the full set of translated transcripts adding new codes as needed. Next, through multiple reviews of the data, we used pattern coding to compile and review the themes (Braun & Clarke, 2006; Saldana, 2016). Thematic coding on the translated transcripts was performed by the study primary investigator, who speaks basic conversational Kinyarwanda and has extensive experience in qualitative research in Rwanda. The translations, coding, and themes were also reviewed by a committee of study co-investigators fluent in Kinyarwanda and English for consistency and validity.

Ethics and funding source

The Rwanda National Ethics Committee, Rwanda National Health Research Committee, and Partners Human Research Committee (Brigham and Women’s Hospital, Boston, USA) reviewed and approved the protocol. All participants provided additional written consent for inclusion in the qualitative study. During transcription, we anonymised all potentially identifying information. All names used in the paper are pseudonyms. The study was sponsored by Partners in Health and conducted in collaboration with Rwanda Biomedical Center (Rwanda Ministry of Health) and University of Rwanda, with funding from Gilead Sciences.

Results

Eleven participants, who were enrolled in the clinical trial, provided consent to participate in the qualitative study and all completed both interviews. The first interviews lasted between 32 and 72 min each, while the home visits were often much longer (approximately 90–120 min). Seven of the participants were female, and the median age was 67 years (range: 44–78), which was similar to the overall primary study cohort. One participant was co-infected with HIV. The participants came from all four provinces and the City of Kigali in Rwanda and represented a mix of educational attainment² and marital status (Table 1). All eleven participants achieved sustained viral response without significant adverse events.

Table 1. Demographic information for qualitative research participants.

Pseudonym (ID)	Gender	Age	Province	Marital Status	Education	Occupation	Income (USD/mth)
Epiphanie (078)	Female	53	South	Widowed	Vocational	Farmer	43–121
Geraldine (291)	Female	46	Kigali	Widowed	Some primary	Not employed	<21
Ange (347)	Female	44	Kigali	Married	Primary completed	Not employed	21–43
Mugabo (342)	Male	72	North	Married	No schooling	Not employed	<21
Augustine (358)	Male	78	East	Divorced	Some primary	Farmer	<21
Esther (391)	Female	71	West	Single	No schooling	Not employed	43–121
Emmanuel (377)	Male	65	East	Married	Some secondary	Not employed	<21
Alice (399)	Female	71	West	Married	Some primary	Not employed	<21
Rose (410)	Female	62	West	Married	Primary completed	Farmer	<21
Jean Claude (408)	Male	67	West	Married	Some secondary	Not employed	<21
Claudine (432)	Female	78	Kigali	Single	Secondary completed	Catholic sister	<21

We identified four themes within the narratives about participants’ care-seeking experiences: (1) understanding diagnosis and use of traditional medicine, (2) access and financial barriers to care-seeking, (3) complex social networks (4) proactivity in care-seeking (Table 2).

Table 2. Summary of main themes and key narrative elements.

Main theme	Key Narrative Elements
Understanding of diagnosis and use of traditional medicine	Local understanding of HCV is grouped with other liver diseases and impacts community attitudes toward HCV. Liver diseases are thought to be highly fatal. Use of traditional medicine for treatment of liver diseases is widespread, though not always effective.
Financial and access obstacles	Viral load confirmation is cost-prohibitive. Resistance to testing is more linked to financial barriers than fear of disclosure. High medication costs lead to feelings of hopelessness. HIV programming served as direct linkage for HCV care.
Complex social networks	Fear of infecting family members leads to self-isolation. Extent of family/community stigma and discrimination is highly variable. Disclosure of HCV to family and community members often mitigates financial barriers to care.
Proactivity in care seeking	Participants simultaneously pursued multiple strategies to overcome the obstacles to care including disclosing their status to social networks, requesting for assistance from local governments. Participants attributed the results of their proactivity to forces beyond their control (e.g. God).

Understanding diagnosis and use of traditional medicine

The widespread testing of HCV began in blood transfusions in 1999 and, outside of private clinics and laboratories, testing remained largely inaccessible until 2015 (Mbituyumuremyi et al., 2018). Prior to this time, participants would often be diagnosed at a health facility with umwijima (English: liver), a broad term for unspecified liver diseases diagnosed by blood tests, clinical symptoms, and ruling out other illnesses.

I learned that I have HCV a bit late. I went for a checkup in 1989. I was diagnosed with umwijima. Back then, liver medication was not available. I had to live with it without taking any treatment. Mugabo (342, first interview)

Participants described umwijima as ‘deadly’, ‘fatal’, or ‘killer diseases’ and thought this was a widespread perception within the communities.

Most [community members] know that umwijima is a fatal disease but they don’t treat me differently. It is a disease like others that anyone can contract at any time. Jean Claude (408, first interview)

Community members say that umwijima can be a deadly disease if one does not take treatment. They also say that people with umwijima get cirrhosis and swollen legs when they are about to die. Alice (399, first interview)

The grouping of HCV with other liver diseases linked HCV to broader beliefs that it was an illness like other chronic conditions and would need treatment to avoid fatal outcomes. In the absence of confirmatory testing and alternative biomedical treatments, participants described how traditional healers were commonly consulted to treat and heal umwijima using ingested substances or at times, scarification practices. Esther sold her only plot of land and went to a traditional healer because she linked her symptoms with being poisoned:

I went to seek care from traditional healers; I thought that [HCV] was poison. Traditional healers took my money for nothing because I did not recover from my disease … I kept having pain. I should have died. Imagine drinking 4 liters of medicine and not be cured! I stopped taking traditional medicine and asked God to make a way. (391, first interview)

Other participants used both traditional and western medicine, which resulted in confusion regarding the outcomes and efficacy of the various treatments used. Emmanuel went to a natural medicine centre for initial treatment of umwijima and after one month of taking four extensive therapies, the doctors told him he was cured.

They [doctors] think umwijima can be treated with traditional medicine … Some give 1 L of medicine and others provide 2 litres. When [after this treatment] one comes to the hospital for a checkup, and [umwijima] is not found, the hepatitis c diagnosis comes as a big surprise, as it is perceived as a very serious disease. (377, first interview)

Financial and access obstacles

Participants faced financial and access obstacles for HCV viral load confirmatory testing (RNA testing) and curative medications, though there was indication of poor access to healthcare overall due to financial barriers. The majority of the participants were unemployed and earned less than 17,499 RWF (21 USD) per month (see Table 1). When participants described their clinic experiences, all but one participant described multiple (usually more than four) visits to health centres and hospitals for illnesses perceived to be related to HCV, as well as had multiple antibody tests. These visits could be clustered into a few weeks, but were often over the course of years. The one participant who did not experience multiple visits, Geraldine (291), was tested through Rwanda’s HIV national programme, which conducted a systematic viral hepatitis screening among all HIV-positive patients.

Participants reported the HCV RNA testing as a major financial barrier to care. Geraldine (291, first interview) said, ‘I have never touched 75,000RWF (91USD, the cost for RNA testing) in my life’. Others echoed this statement, elaborating that the financial burdens expanded beyond the RNA testing.

[The doctor] told me that all HCV patients should go to seek care at [the referral hospital]. Additionally, I had to take the HCV RNA test, which costs 75,000RWF (91USD) and pay for the medication. In total I will have to pay over 1 million RWF (1208USD). Although I was suffering, I laughed a lot because I could not afford to pay it. I asked the doctor the number of people who can afford to pay such an amount of money. The doctor asked if I have domestic animals to sell and buy the treatment. I told her that I do not even have a hen. I am very poor. I live by the grace of God. Alice (399, first interview)

The lack of financial and/or more general access obstacles often led participants to lose hope. When Epiphanie (078, first interview) found out that there was a cure for HCV, she gained hope but then she realised that she could not afford the medication: ‘I was going to be like patients who know about their sickness but they cannot access treatment and wait until they die’.

When Jean Claude (408) was diagnosed with HCV after years of clinic visits, the cost of three months of medication was 1.2 million RWF (1449USD). Jean Claude’s monthly income was approximately 15,000RWF (18USD), and he was unable to work due to his illness. At the time his only major asset was his land, which if sold would have covered only half the cost of the medication:

I lost hope because they told me that [HCV] is an incurable disease and the treatment is so expensive … I asked if there are no other options than paying 1.2 million [RWF]. I told the doctor that I have never seen such an amount, I do not know if I can even count it! I will die … My life changed completely because of this sickness. (408, first interview)

For Jean Claude, HCV was still incurable even though the medication brought promise of cure. Jean Claude elaborated in the first interview, ‘ … people refuse to take the HCV test because they are afraid of losing hope if they are diagnosed with [HCV]’. Epiphanie (078), Rose (410), and Ange (347) also told us that people in their communities were afraid of HCV testing because the diagnostics and treatment were not accessible, not due to fear of stigma or discrimination. Ange (347, first interview) said, ‘Community members are scared of HCV. They always mention that they cannot afford to pay for HCV lab tests. Many patients stay at home because they do not have money for the HCV tests’.

Complex social networks

Participants described complex and variable social networks. There was a balance of self-isolation versus social support for each individual, and the experience of stigma was highly variable. Many participants spoke of using (unnecessary) protection measures for fear of transmitting HCV infection to family members. For example, Epiphanie (078) stopped putting toothpaste directly on her toothbrush for fear of contaminating the toothpaste tube. Ange (347) only showered after her kids, never before, for fear of the virus remaining in the bathtub that could be transmitted to her children. Esther (391, first interview) reported:

Some people advised me to take my own pot and plate, and start eating food without salt and oil. I was confused. When I carried a baby, I was worried that I might transmit HCV to the baby. I would even look away while breathing because I was scared to transmit it to the baby.

However, Esther followed up the above statement by saying that her family did not discriminate against her when she disclosed her HCV status to them.

Ange’s husband treated her poorly after she disclosed her HCV status. He refused to sleep next to her and blamed her for bringing HCV into their family. He informed community members of her HCV status without her consent, often while drinking alcohol. He often became verbally abusive in accusing her of sexual activity outside of their marriage. He refused testing for HCV himself.

My husband mistreated me after learning that I have HCV. He thought that I was going to die soon. He asked how many days are left before I pass away. Thereafter, I felt depressed … In fact, he did not accept my sickness as I explained it to him. Instead of supporting, he was discouraging me. (347, first interview)

Other participants described facing various forms of stigma from family or neighbours. For Geraldine, who is co-infected with HIV, she felt that she experienced more stigma from her family related to HCV than to HIV.

I only faced stigma when I learned that I have HCV … I told some of my relatives that I have [HCV]. After, my sister-in-law with whom I was sharing a toilet said, ‘Are we going to keep sharing the toilet with someone who has HCV? Would you not infect us?’ (291, first interview)

Despite self-isolation and potential mistreatment, participants leveraged social networks to obtain resources needed for medical expenses. This often involved the disclosure of potential HCV infection to family members, church members, and/or community groups to raise the funds for confirmatory testing.

They referred me to the [referral hospital] on January 16 and asked me to pay 75,000RWF (91USD). I went back home because I could not get this amount of money. I explained my sorrow to one of the church members and she accepted to pay for the test. I came back to the hospital on January 30 and they conducted [confirmation] testing and told me that I will get my results after two weeks. I came back on February 15 and the results showed that I have HCV. Ange (347, first interview)

At the beginning [when I was first confirmed to have HCV], I lost hope but I met a benefactor who gave me money to take a viral load test. Thereafter, I said that God would make a way until I received treatment. Epiphanie (078, first interview)

Proactivity in care seeking

A notable theme throughout the narratives was the need for patient-side proactivity in HCV care and treatment seeking. However, simultaneously, participants often referred to their reliance on forces they perceived to be outside of their control, such as religious or state institutions, as the determinants of their fate. All but one of the participants emphasised their reliance on God for access to medication. Many participants also focused on the key role of the government in determining whether they would be able to access medications. The common perception among the participants was that accessing curative medications was out of their individual control and not dependent on their own actions. For them, access to the medication was as magical as the cure.

Despite the lack of perceived self-determination, many participants told narratives of activating social networks through disclosure of HCV status and actively seeking diagnostic or treatment pathways. Two examples of patient-side proactivity are described below: Mugabo (342), whose care pathway lasted almost 30 years, and Ange (347), whose experiences spanned less than one year.

After he heard that a cure was available, Mugabo arranged a visit to the specialist’s private clinic to avoid waiting for an appointment at the referral hospital. At that visit, he received a prescription for DAAs but after realising that he could not afford the medication, Mugabo ‘went back home and waited for God to do miracles’. Mugabo reported that God led him to the study that allowed him to access treatment. When probed about his experiences, he relayed a complex multi-step process that he underwent to gain access and enrolment in the study including scheduling an appointment with a referral specialist far from his home, requesting and collecting funds from his extended family to support transport costs, networking with other patients at the treatment site to learn about the objectives and eligibility of the study, and presenting directly to the study site to enquire about enrolment.

Ange first attempted to access curative treatment by requesting loans from family members, which was unsuccessful. She reported that at that point, ‘I just believed God will do miracles and I will be cured’. As the primary caregiver for five children, she was compelled to seek any means possible to support the cost of treatment. Ange consulted village leaders and was referred to progressively higher levels in the Rwandan administrative structure, including sector and district authorities. After multiple appointments and requests, Ange was finally referred to the Office of the President, where her request was received and processed, and she was referred to the mayor of Kigali, the capital city, to provide material assistance. Ange was enrolled in the clinical study before assistance was provided. Despite this clear sequence of independent self-advocacy and determination, Ange summarised her story in the first interview by stating: ‘I put my problem in God’s hands because I could not afford to buy it myself … Although it took long, God made a way’.

Discussion

Based on the interviews with eleven participants treated and cured with DAAs in a clinical trial, we identified four main themes in the care-seeking pathway. Overall, the narratives demonstrate how the complex interactions of individual and community perceptions and care-seeking actions influenced the ways in which participants manoeuvered through their social worlds to ultimately gain access to care and treatment.

Our findings highlight the pervasiveness of the concept umwijima as a commonly understood construct for liver-related diseases in Rwandan communities. Umwijima is not only viewed as severe and nearly always fatal, but also as a condition that could only be treated through traditional practices, prior to the introduction of DAAs. This commonly held belief is likely due to the fact that diagnostics and treatment for specific etiologies of liver disease (e.g. HBV, HCV, hepatic parasites, hepatotoxins) have only recently become widely available in Rwanda. This likely explains the lack of knowledge specifically about HCV in resource-constrained communities around SSA. Ethnographic studies from similar resource-constrained contexts, such as The Gambia, Burkina Faso, Central Africa Republic, and Madagascar, similarly reported limited community awareness and knowledge regarding chronic viral hepatitis infections and local constructs for the visible signs of liver-related diseases (Shimakawa et al., 2017).

Cost and access of diagnosis and treatment along the HCV care pathway was unsurprisingly a dominant theme throughout the narratives. The prospect of HCV diagnostic confirmation and cure via newer-generation DAAs regimens generated extreme hope, though almost uniformly followed by disappointment and hopelessness due to associated financial barriers. Despite a well-organized and progressive response to HCV infection in Rwanda, including provision of free or low-cost testing and treatment to large sections of the population (Gilead, 2016; Gupta & Nsanzimana, 2018), there were still many access and financial barriers that participants faced during care and treatment, including access to licensed and trained care providers, viral load confirmation, and DAAs.

Participants’ utilisation of social networks to mitigate some of the financial obstacles of obtaining care at referral hospitals and access to diagnostic testing was similar to that previously reported for access to antiretroviral medications for HIV early in the epidemic prior to heavily supported and subsidised medication delivery. One study conducted in Uganda described patients as ‘socially embedded seekers of health, not passive recipients of donor beneficence’ (Reynolds Whyte et al., 2013). In Nguyen’s (2010) ethnography of the global response to HIV situated in West Africa, he reported that patient disclosure and narration through formal support groups was a common mode of accessing treatment (Nguyen, 2010). In contrast, qualitative findings from high income countries often demonstrated that diagnosis and disclosure of HCV infection resulted in a reduced sense of social support, but treatment or cure offered participants several forms of hope for social reconnection, social redemption, a return to a ‘normal’ life (Harris, 2017; Madden et al., 2018). In a study in Australia, participants stressed the relief of no longer having to disclose HCV (and potentially PWID) status to social networks following successful treatment (Wright et al., 2018).

The barriers faced by participants support the need for greater decentralisation of HCV care and treatment through infrastructure and supply chain scale-up, integration of hepatitis services with existing health platforms, and training and task-shifting of care provision to available health cadres at lower levels of the health system (Cooke et al., 2019). It is also important to acknowledge that even in the absence of access and financial barriers, factors identified in this study, such as lacking overall social support, as well as the potential for community stigma, may still prevent individuals with HCV from using diagnostic and treatment services. These factors may be mitigated by continued health campaigns about viral hepatitis, with careful consideration to avoid ‘making up’ a certain kind of person or category around HCV that could result in stigma that did not exist previously in Rwanda (Hacking, 2001).

Misinformation and misunderstanding regarding modes of HCV transmission resulted in self-isolation and varying extents of perceived stigma within participants’ homes and communities. As noted previously, HCV transmission routes in Rwanda are assumed to be primarily healthcare exposures in informal and formal settings (Mbituyumuremyi et al., 2018), unlike other contexts where stigma is often linked to HIV, injection drug use, or both (Northrop, 2017). As such, it is not surprising that the stories of stigma were fewer and quite different than literature from contexts where injection drug use is more common. In our findings, the attitudes of the community toward HCV enabled participants to be more active in their care seeking and seemed to be a heavily facilitating factor for accessing care and treatment. Overall, the narratives from the participants in this study provided a powerful demonstration of the agency these participants held as they manoeuvered through health systems and social networks disclosing potential HCV to their peers and community leaders while actively seeking out treatment.

The major limitation of this study is that we recruited participants from an ongoing clinical study, therefore our findings consist only of narratives from individuals who successfully navigated access to HCV care and treatment. Therefore, we potentially miss obstacles that may be more severe and less surmountable, resulting in complete failure to access the health system. However, given the diversity of patient backgrounds included in this study and the breadth of patient experiences described, we believe this study provides a comprehensive picture of the typical HCV care-seeking pathways experienced in Rwanda. In Rwanda more generally, there tends to be a high level of health care-seeking behaviour (Abbott et al., 2017). This may not be the case in other resource-constrained settings, where less resourced health systems and more highly stigmatising cultural, religious, political, or community norms may present additional and more formidable obstacles to HCV care-seeking. Areas of the region where intravenous drug use and/or imprisonment is a more common risk factor for HCV acquisition may be subject to unique care seeking pathways, obstacles, and preferences.

With the immense burden of liver-related morbidity and mortality in SSA due to HCV infection and the prospect of safe and affordable treatment, this study provides valuable information regarding the key challenges and obstacles to the patient care-seeking experience. In addition to the epidemiological and clinical characteristics of the HCV epidemic, our findings provide data on how unique, localised communities perceive HCV infection, understand its transmission, and are aware of the availability and accessibility of diagnosis and treatment. Results from this study demonstrate the complex ways in which Rwandans understand HCV, utilise parallel formal and informal health systems, activate social networks in their care seeking journeys, and the importance of active agency and self-determination in the opportunities and outcomes for their own health in the context of an early response to a major epidemic. By recognising the understanding and expectations for those living with chronic HCV in Rwanda, our findings may facilitate the introduction and development of a more sustainable and successful public health response in this highly vulnerable and neglected region.

Acknowledgements

We would like to acknowledge Epimaque Habimana for helping with the data collection for this study. We also extend our gratitude to all the participants of SHARED study but especially those who participated in the qualitative sub-study and provided us with their detailed experiences surrounding hepatitis C, as well as their lives more generally.

Disclosure statement

No potential conflict of interest was reported by the author(s). NG reports previous grants for investigator-sponsored research from Gilead Sciences.

Additional information

Funding

This work was supported by Gilead Sciences, Inc.

Notes

1 The average exchange rate in January 2017 was 828 RWF for 1 USD. This rate is used throughout.

2 The education categories for this question were: no schooling, some primary (under 6 years completed), primary completed (6 years completed), some secondary completed (under 12 years completed), secondary completed (12 years completed), vocational school (vocational school attended after primary school), university level.