A qualitative study of the social and structural vulnerabilities of HIV and chronic disease syndemics in low-resource urban health facilities in South Africa

Abstract

Low- and middle-income countries are experiencing multiple epidemics, including HIV and chronic non-communicable diseases. These epidemics present a serious public health concern as they increase the demand for health services, negatively impact quality of life, and increase mortality. While efforts have been made to integrate care approaches within primary care, people living with HIV (PLWH) experiencing chronic comorbidities often face intersecting social and structural vulnerabilities that are not fully recognized. Given the robust evidence of converging epidemics of HIV and other chronic conditions, through the lens of syndemic theory, this study aimed to identify and examine the social and structural vulnerabilities driving syndemic disease within an urban population of PLWH in South Africa. This study applied a qualitative research design involving in-depth interviews with 13 PLWH and 14 healthcare providers in Johannesburg, South Africa collected between August and September 2024. Structural vulnerabilities (disrupted access to care, unemployment, migration) and social vulnerabilities (income, social support, violence, stigma) influence disease clusters through multiple pathways including chronic stress-induced physiological changes, reduced agency, and providers who lacked structural competency in recognizing how vulnerabilities impact disease pathogenesis and management. Direct consideration of these vulnerabilities with structural reform will meet the unique health needs and challenges of HIV and chronic disease syndemics. This will involve providers considering the social structures that undermine the capacities of patients and direct attention to social vulnerabilities through increased availability of resources both within and beyond healthcare facilities.

Introduction

Low- and middle-income countries are currently facing multiple concurrent epidemics of chronic disease. In South Africa a recent study revealed that 70% of the respondents had at least two concurrent health conditions [1]. In addition to hosting the largest number of people living with HIV (PLWH), South Africa also carries one of the highest reported rates of hypertension (78%) among adults over the age of 50 [2–4]. Hypertension is the second leading risk factor for death in South Africa, with 24% of the adult population with raised blood pressure, and nationally-representative estimates have indicated a marked increase in hypertension prevalence in the past two decades [5, 6]. The national prevalence of hypertension has more than doubled from the first Demographic and Health Survey (DHS) in 1998 (23%) to the most recent data from 2016 (48%) [7, 8]. Estimates suggest that non-communicable diseases account for 51% of deaths nationally, 19% of which are due to cardiovascular diseases, and 7% due to diabetes [5].

Compared with their HIV-seronegative counterparts, PLWH experience higher risk and severity of comorbid diseases [9, 10] at earlier ages [11, 12], given HIV-related inflammation and toxicity of HIV treatments [13]. Numerous international cohort studies report increases in body weight, body mass index, weight-related cardiovascular and cardiometabolic risks such as diabetes and hypertension, and elevated cholesterol in persons starting antiretroviral therapy (ARV) [14–17]. In 2018, the global prevalence of hypertension in PLWH was estimated at 9% and at least 59% of these were living in sub-Saharan Africa [18]. Almost 30% of PLWH in South Africa have at least one other comorbidity [19]. About one fifth of PLWH in South Africa were hypertensive at ARV initiation and almost 15% were diagnosed with hypertension at follow-up [20].

Epidemic disease clusters are prominent in socially disadvantaged populations. Age, sex, race/ethnicity, income, education, and living/housing status are associated with elevated risk for comorbid diseases in PLWH [21–23]. Structural factors such as neighborhood deprivation (per-capita annual household income, employment, attained education level, and housing/living status), are all robust correlates of vulnerability to HIV infection and accelerated disease progression [24–27]. Cross-sectional studies reveal that neighborhood deprivation is also associated with the prevalence of cardiovascular disease [28–38], obesity [39–43], hypertension [44, 45], and diabetes [46–49]. As human interactions with social environments are complex, a host of pathways at the population level are likely involved in chronic comorbid disease development in PLWH and affect the course of disease management. The unique healthcare needs of PLWH with multiple chronic conditions require a clear understanding of the social and structural vulnerabilities and consequent challenges that not only drive disease onset but also limit disease management and worsen health outcomes.

We draw on syndemic theory in recognizing the robust economic, environmental, political, historical, and cultural drivers of disease clusters. A syndemic is defined as population-level clustering of two or more diseases that interact to increase the health burden of socially disadvantaged populations [50–53]. Born from critical medical anthropology, syndemic theory recognizes that the structural violence imposed by established policies, laws, and institutions drives disease clusters. The term structural violence labels relations of inequality that are so grave in their amplification of human pain and suffering and so damaging in their effect on well-being that they can be seen as a form of sanctioned violence, like unequal access to resources that are needed to prevent or manage disease (e.g., adequate nutrition, quality healthcare, housing, education, and employment). As Farmer [54, 55], who was among the first to emphasize the role of structural violence as a critical factor in the HIV pandemic notes, structural violence refers to “a host of offenses against human dignity [including]: extreme and relative poverty, social inequalities ranging from racism to gender inequality, and the more spectacular forms of violence that are uncontested human rights abuses” [54]. Although experienced individually, structural violence targets classes of people and subjects them to common forms of lived oppression, including biological factors like exposure to enduring stress, increased dietary deficiencies, experience of physical trauma, and heightened disease pathogenesis [56–59]. Given the robust evidence of converging epidemics of HIV and other chronic conditions [51, 53, 60–64], this study aimed to identify and examine the social and structural vulnerabilities driving syndemic disease within an urban population of PLWH in South Africa.

Methods

The study was conducted among PLWH attending nine primary health care clinics in the City of Johannesburg’s Region F. Public primary healthcare clinics are the main site of HIV and chronic disease management in South Africa, providing free care to all patients. Gauteng Province, of which Johannesburg is the capital, comprises the largest (14.7 million) share of the South African population and about 18% of the adult population is living with HIV [65]. Region F experiences high levels of crime, declining property values due to the physical degradation of public areas, illegal property occupation and land invasion of vacated buildings, and xenophobic violence [66].

The eligibility criteria for PLWH included being aged 18 years or older and receiving care at one of the primary healthcare clinics in Region F. We did not exclude PLWH without an additional chronic disease as routine testing for chronic conditions is inconsistent, related to the absence or malfunctioning of equipment and resource limitations [67–69]. Patient lists were provided from the ongoing iHEART-SA intervention [70] taking place in the primary healthcare clinics in Region F. As part of the iHEART-SA study all patients over 18 years complete an intake form collecting details on HIV status and treatment management, blood pressure, and other routine vitals including height and weight. Additional chronic disease data including hypertension diagnosis, hypercholesterolemia, and obesity are recorded by the study during routine medical chart reviews.

Eligible PLWH were selected to participate in this study using a random number generator. Randomly selected PLWH were contacted via telephone and invited to participate. Interviews were scheduled to coincide with their routine healthcare appointments with interviews taking place in-person in private consultation rooms at their primary healthcare clinic. The interviews with PLWH were conducted in English, isiZulu, or isiXhosa. Interviews with PLWH lasted between 60 and 90 min. All PLWH were compensated 300 ZAR (17 USD) for their time. Eligible PLWH were recruited until the point of thematic saturation, consistent with established guidance on qualitative research using grounded theory [71–74]. As evidenced by Guest, Bunce, and Johnson [74], 12 interviews of a relatively homogenous sample are sufficient for thematic saturation, with six sufficient for identifying basic elements of meta themes.

For the interviews with PLWH, we focused on social and structural vulnerabilities and their impact on disease progression and management. We developed questions premised around four primary health-related vulnerability considerations: (1) material deprivation in relation to housing stability, (2) employment deprivation in relation to ability to maintain an income to support their wellbeing, (3) environmental deprivation in relation to the conditions of housing, neighborhood pollution, and safety, and (4) social deprivation in relation to having a supportive social network for financial and emotional support. We also asked PLWH about their experiences within the healthcare sector and how this influenced their ability to manage their chronic conditions. Health conditions, or disease status were self-reported and not confirmed with patient records. We were aware of the health conditions of each participant prior to each interview and found no contradictions when prompted to discuss these conditions.

Respecting the need to prioritize patient care, a convenience sample of available HCP from each facility were recruited. HCPs with both the training and daily task of managing chronic disease1 patients, including patients presenting for routine appointments to manage tuberculosis, HIV, diabetes, and hypertension, were contacted in advance and invited to participate. HCP were interviewed when time and staffing allowed between patients, during breaks, or after hours. All interviews with HCPs were conducted in person in English lasting between 30 and 60 min. HCP were not compensated for their time. Eligible HCP were recruited until the point of thematic saturation, with transcripts coded separately from patients, consistent with established guidance on qualitative research using grounded theory [71–74].

For the interviews with HCPs, we focused on experiences of managing patients with chronic conditions. We developed a set of questions that would help provide information on the challenges both within and beyond the healthcare setting, as experienced by patients, to achieve optimal disease management. These questions were premised around: (1) the treatment and care provided to PLWH and other chronic comorbidities, (2) resource availability and limitations, and (3) patient adherence, referencing “the extent to which a person’s behavior, taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider” [75, 76]. All interviews were conducted between August and September 2024. All participants (PLWH and HCPs) provided written consent.

Where a local language was used, the data were transcribed and translated back to English by an isiXhosa or isiZulu speaking translator and checked for accuracy and completeness by the researchers (AN and SN) who conducted all patient interviews. All transcripts were imported into MaxQDA for coding. The first author (NB) coded all interviews, separately for HCPs and PLWH, using a grounded theory approach, an iterative process beginning with open coding of each transcript identifying and defining codes. This was followed by axial coding, drawing relationships between codes and identifying larger categories or themes in discussions with the research team. The entire study team was involved in daily discussions about emerging themes. Emerging themes were pursued in subsequent interviews, an ethnographic process of iterative interviewing to gain depth of understanding. Discussions involved members of the research team that were not involved in either conducting or coding the interviews. This balanced emotion (from hearing deeply personal stories), expertise (existing knowledge of the subject matter and related literature), and objectivity (the act of coding). In so doing, the potential for confirmatory bias, selective attention bias, and coding drift were reduced. Once all interviews were complete, selective coding of all transcripts was conducted using the complete codebook. This study was approved by the Ethics Boards of the University of Connecticut (H23-0309) and the University of Witwatersrand (M240424 M240621-A-0001).

Researcher characteristics and reflexivity

This study was conducted by a multidisciplinary team whose social locations, professional backgrounds, and lived experiences informed all stages of the research process, from conceptualization to interpretation of findings. Because this work examines social and structural vulnerabilities shaping syndemic disease burdens in Johannesburg, our identities and histories inevitably shape the questions asked, engagements with communities, and interpretations of the structural forces at play.

NB is a white, South African–born, US-educated female researcher trained in anthropology and public health. Her professional trajectory, spanning HIV prevention public health practice in state and city government in the US and global health scholarship in sub-Saharan Africa, offers her cultural familiarity and personal connection to the context with simultaneous engagement with global health discourses. She is aware that her racial identity and transnational mobility confer privilege that requires ongoing critical reflection, particularly in a context marked by deep racialized inequalities in health, wealth, and academic representation. Her role in the project involved overarching study design, conceptual framing, and cross-site integration of findings, animated by a commitment to grounding syndemic theory in lived realities. SLE, a South African woman of Indian heritage, has more than two decades of experience working on HIV-related projects in Johannesburg. Her professional life has been deeply embedded within public health systems and community partnerships in the city, and her long-term presence offers important continuity and contextual depth. Her sustained engagement with local stakeholders shaped the study’s ethical conduct, community relationships, and interpretation of institutional barriers. AN is a Black, Xhosa, South African woman from the Eastern Cape with extensive expertise in qualitative interviewing across multiple South African communities. Her linguistic fluency and cultural competence were central to building trust with participants, facilitating interviews that allowed for nuanced discussion of sensitive experiences of illness, structural exclusion, and syndemic interactions. AN’s reflections on mobility between rural and urban settings, and on the lived experience of navigating public health systems, helped the team interpret how structural violence materializes differently across geographies and identities. Her role foregrounded the necessity of grounding analysis in participants’ everyday narratives. SN, a Black South African woman and master’s student in public health at the University of the Witwatersrand, contributed to data collection, coding, and interpretive analysis. As an emerging qualitative researcher trained within a historically significant South African institution, her perspective highlighted the current generation’s encounters with persistent inequalities, particularly how young Black women entering the public health field negotiate academic spaces, community expectations, and structural constraints. Her contributions ensured that youth perspectives and contemporary social realities were not overshadowed by more established academic frameworks.

Across the team, we recognize that our diverse identities produce both insight and blind spots. Our collaboration reflects a commitment to dialogic, reflexive, and community-engaged research practices. Throughout the study, we held ongoing discussions about power, representation, and accountability, striving to ensure that our analyses foregrounded participants’ experiences while critically examining how intersecting structures of racialization, class, and enduring historical inequities, shape Johannesburg’s syndemic landscape. This reflexive approach is central to our goal of producing scholarship that contributes to both understanding and addressing the structural drivers of health vulnerability.

Results

A total of 27 people were included in the study, 14 HCPs and 13 PLWH. Of the 13 PLWH interviewed, 10 reported a diagnosis with hypertension, one with high cholesterol, and two with asthma (Table 1). All PLWH were on ARVs, 77.8% of PLWH diagnosed with hypertension were on blood pressure medication. Half of the PLWH were aged between 35 and 44 years, mostly female (92%), and 84.6% South African nationals. Gender of PLWH was determined by the iHEART-SA dataset and verbally confirmed at the onset of the interview. Just over half (61.5%) were employed at the time of the interview. The sample of HCPs included representatives from all nine of the primary healthcare clinics, nine professional nurses, one enrolled nurse, one clinic manager, two community health workers, and one social worker. With regards to gender, HCPs comprised 11 females and three males. All HCPs had spent at least two years in their profession and in providing care to patients with chronic conditions.

Table 1.

Demographics and health status of PLWH interviewed

ARV Antiretroviral therapy, HTN Hypertension, TB tuberculosi

As we explore below, PLWH experienced multiple intersecting social and structural vulnerabilities known to increase risk for chronic diseases and challenge chronic disease management. First, disrupted access to care at the structural level related to healthcare resource limitations, high levels of national unemployment resulting in informal, inflexible, and unregulated employment arrangements, and migratory labor practices that compel routine patient movement and relocation. Second, the lived experience of structural violence, a life of uncertainty and insecurity regarding employment and income, housing, food, social support, and safety. These social and structural vulnerabilities influence disease clusters through multiple pathways including chronic stress, lack of perceived self-efficacy, and healthcare providers limited structural competency.

Structural vulnerabilities: access to care

At the structural level, disruptions in access to care occurred due to resource limitations within the clinic and the healthcare sector, employment barriers preventing patients from maintaining routine appointment schedules, and patient mobility related to migratory labor contracts. HCP reported that their health facilities routinely experienced staff shortages, with staff either on-leave or at trainings, or insufficient staff employed for the workload. Nurses cited being overwhelmed and fatigued by the workload and patient flow, seeing at least 45 patients daily. Nurses acknowledged that they were unable to conduct thorough assessments of patients and that health concerns were likely missed if patients did not present with specific symptoms, noting, “There are things you will miss, like you will miss bloods or something, because there are too many people at the same time” (RC2). Nurses also noted the failure of standard equipment for routine clinical assessment such as blood pressure machines or weighing scales being too old, inappropriate for the clinic setting, lacking batteries, or absent entirely.

Similarly, specialist services including mental health care providers and social workers to address social vulnerabilities were limited. Social workers rotated between clinics in the region offering services at each clinic one day a week. Only one clinic in the region hosted nurses with mental health specialization, with a psychiatrist onsite once a week. None of the PLWH reported having spoken with a social worker. The social worker interviewed indicated being overwhelmed with the patient load and that for many patients their concerns were beyond his capacity. Only one PLWH reported seeing a mental health specialist. Although the mental health care nurses reported that mental health care is not prioritized by South Africans (referring to citizens, healthcare management, and policy makers), the PLWH interviewed indicated that they would value engaging with a therapist to help them address past traumas and manage the stresses related to their current complex health conditions.

To reduce patient load and decrease the disease management burden of PLWH, a recent system was implemented nationally to “decant” patients with undetectable viral loads to private pharmacies for the retrieval of monthly supplies of ARVs and hypertension medication. HCP reported that while this system reduced patient numbers, its success was limited by system errors. Patients were still unable to retrieve their medication because scripts had not been correctly entered into the system, unstable internet signals prevented HCP from the completion of transactions in the system, or out-of-stock medications required the canceling of entire scripts even those with available medications.

In addition to overburdened health clinics, access to care was directly impacted by employment, including both having limited time off work to seek care or having no employment to pay for the cost of transportation to a health clinic. South Africa’s unemployment rate in 2024 was reported at 32%. Half of the PLWH interviewed were unemployed. According to the Quarterly Labour Force Survey released by Statistics South Africa, informal sector employment accounted for 19.5% of total employment in 2024 [77]. These high rates of unemployment and informal labor result in precarious and unregulated employment. Employed PLWH reported that they could not risk losing their job by taking time off to visit the clinic, especially given long waiting times and lack of scheduled appointments. One PLWH explained that he worked as a taxi driver and was only paid for the time he was working, noting, “The problem is with collecting them [medication]. When you come to the clinic, the time and work clash. You get here in the morning and leave around 3pm” (Pat-RC3). Most clinics were not open beyond standard business hours or on weekends. South African employment law mandates that employers cannot discriminate based on disease status, and the Basic Conditions of Employment Act designates minimal standards of leave entitlements. However, as many individuals are employed in the informal sector or have short-term contracts, there is limited state oversight to guarantee these entitlements and ensure non-discrimination based on HIV status. HCP reported that in the past employers used to accept a clinic note to acknowledge an employee’s absence, but were less willing to accept them now and would not pay employees for hours not worked. One HCP explained, “Patients have no choice because the boss is not going to release them to come to clinic” (RC2). Unemployed PLWH reported struggling to cover the cost of transportation to clinics if they did not live within walking distance, resulting in missed routine appointments.

South Africa’s long-standing migratory labor market further contributes to disrupted access in chronic disease management. HCP indicated that treating chronic conditions was particularly challenging as “patients will find a job and they will be gone for 3 or 6 months, they just disappear” (RC1). In addition to moving away from Johannesburg for employment opportunities, PLWH recounted moving from rural areas of South Africa with sparce healthcare facilities to Johannesburg for potential employment. Given family ties, they would routinely attend funerals or weddings at home, as well as return home during the extended December holidays, often not considering or prioritizing treatment schedules or clinic appointments. In addition to the limited availability of healthcare facilities in rural areas, PLWH may consciously pause treatments when at home for fear of disclosure, as described further below. For foreign nationals, these travels come with the added challenge of maintaining documentation such as national identification documents, migration status, and passports, which was reported by both PLWH and HCP as easily lost or stolen disrupting treatment plans.

Social vulnerabilities: uncertainty in income and social support and threat of violence and stigma

The harm caused by social structures, historical legacies, and institutions played out for PLWH as a life of uncertainty and insecurity. The uncertainty related to income influenced all aspects of PLWH lives including access to care as mentioned above, food and housing insecurity, and safety. While South African nationals have access to social grants including those for children and disabilities, these grants are minimal (less than 20 USD per month per child/individual), and insufficient to cover the cost of rent, food, school fees, transportation costs, and other necessities. PLWH described living arrangements with three to four families sharing two-bedroom apartments, the continued use of primary outside sanitation facilities, dilapidate and substandard housing, and informal housing in shacks erected in backyards, in parks, or on the side of the street.

Life’s uncertainty was further reflected in unstable social relationships. PLWH reflected on past partnerships, with multiple partners listed as deceased due to accidents or disease, being absent or unreliable. Immediate family members such as mothers, sisters, and brothers were often physically present, even sharing households, but not considered a reliable source of emotional or economic support. PLWH routinely described family members as just disappearing.

PLWH reported being under constant threat of physical violence from intimate partners, family members, and strangers, and of HIV-associated stigma. Multiple patients reflected on strained family dynamics due to sexual abuse committed by family members during their childhood. PLWH reported past experiences of intimate partner violence. One PLWH explained that she feared her abusive partner would discover her HIV status, so she stopped taking her ARVs for two months until she fell sick and decided to end the relationship. Muggings and aggravated and armed robberies are considered part of everyday life in Johannesburg [66], as one PLWH described her housing situation, “No, it’s not a safe neighborhood. There are a lot of drugs, you know, people being stabbed, being killed for their phones, daylight robberies and no one interferes because everyone is scared to interfere” (Pat-JP1). Violence and injuries are the second leading cause of death and lost disability-adjusted life years in South Africa [78]. The overall crime rate in South Africa is 75.4 per 100,000 people, ranked fifth in the world following Venezuela, Papua New Guinea, Afghanistan, and Haiti [79]. The overall homicide rate in South Africa is six times higher than the global average [80].

HIV-related stigma remains pervasive. PLWH reported fear of disclosing to partners and family members because they did not want to disappoint or were themselves struggling to process their status. PLWH described family members talking disparagingly about other people who have HIV and did not want to be regarded the same way. They explained, “The problem is that people talk a lot. When you have lost weight, they will tell you that you have HIV. When you gain weight, they will tell you that the pills are treating you well. Everything is always HIV, even if it’s not HIV” (Pat-KB2). A PLWH reported, “I didn’t take my medication for the week that I was at the funeral because I was not comfortable with people knowing that I am HIV positive” (Pat-GC2). HCPs reported that female patients refrain from telling their partners of their HIV status for fear of abandonment and the loss of financial support or violence.

PLWH and HCP reflected that the clinic structures and practices also contribute to stigma. PLWH had formerly waited in a separate line from patients with other chronic conditions. They also had different colored medical files which easily identified them as being infected with HIV. Reflecting on this old system, a PLWH noted, “these lines, they were killing our spirit. A person who doesn’t know that you’ve got it [HIV], can see by where you are queuing in the line that you belong in this line [for HIV]” (Pat-RC2). One patient described a time when she saw someone she knew at the clinic and found it “difficult to go and take the file because then the person could see I was taking the pills [ARVs]. Only when she had left did I go and take my file” (Pat-SH1). This internalized stigma and fear of disclosure impacted PLWH’s willingness and ability to remain committed to disease management and treatment schedules.

Pathways: the impact of social and structural vulnerabilities on chronic disease management

The social and structural vulnerabilities experienced by PLWH in inner-city Johannesburg influence health burden through multiple pathways including chronic stress-induced physiological changes, reduced agency, and providers who lacked structural competency in recognizing how vulnerabilities impact disease pathogenesis and management.

Chronic stress worsens disease progression through hormonal imbalance, sympathetic nervous system activation, inflammation, and immune system disruption, leading to weight gain, high blood sugar, high blood pressure, and immune disorders [81]. PLWH expressed high levels of stress related to unemployment, a consequence of high national unemployment, and lack of enforcement of labor policies to ensure worker protection against HIV-related discrimination, sick leave access, and general job security, and the resulting dependence on others. PLWH lamented on the precarious nature of employment. One PLWH explained, “I lost my job the day before yesterday. The contract ended. A new company was appointed, and they didn’t absorb us” (Pat-SH1). Describing her poor working conditions, a domestic laborer, dependent on her employer for housing and food, indicated that the three families she worked for were rude, sometimes only paying her half of her wages, “and if I talk back, they say they don’t have the money if I am not okay with that, they say I must look for another job. What can I say, I can’t get another job” (Pat-CG1).

PLWH described how the lack of financial independence resulted in constant anxiety, “You always have the worry or the fear of what’s gonna happen if no one helps out. For example, if you have a clinic appointment and you need to come to the clinic, how are you gonna get there? With what money? So you always thinking, you always thinking” (Pat-KB1). Noted another, “It stresses me because I don’t want to depend on another person. I don’t want to constantly keep asking.…If I get a job, everything will be alright, even my blood pressure will go down” (Pat-MC1). This constant stress was acknowledged as being bad for health, “It triggers a lot of things in our bodies. You end up being nervous, you are not comfortable. It’s not healthy” (Pat-JP1).

Limited agency and perceived self-efficacy not only contributed to high levels of chronic stress, but also directly impacted treatment adherence. Taking daily medication was a considerable challenge for some. One PLWH noted, “I didn’t like it because no one likes taking a pill every day” (Pat-JP2). PLWH expressed anger, shame, and fear regarding their HIV status, which impacted their treatment adherence. One PLWH explained, “Having to know that I’m HIV positive, not knowing where I got that from, made me very angry. So, I thought, I’m leaving these pills because I was so angry at myself” (Pat-RC1). PLWH with limited social support, particularly those who did not disclose their HIV status, managing the stress of their condition and its treatment alone resulted in inconsistent treatment or repetitive defaulting. Many PLWH regarded their high blood pressure as a greater burden than their HIV infection. One PLWH indicated that, “Being HIV positive doesn’t matter, that doesn’t disturb me. The only thing that is of concern right now is the BP [high blood pressure].… I didn’t quite accept the hypertension medication like the way I accepted my HIV status” (Pat-JP2). Another noted, “I was not coping well with was BP [high blood pressure]. I am always thinking about it. Why did I never used to have BP [high blood pressure] and now I have BP [high blood pressure]?” (Pat-MC1).

PLWH lamented how challenging it was to implement the diet modifications suggested by providers to manage their hypertension or to complement their HIV treatment, explaining, “The situation does not allow [for me to eat healthier vegetables] because when you look at the money for the 20 Rand lettuce, from that 20 Rand I could have bought a loaf of bread for my child to carry to school” (Pat-RC2). PLWH indicated that they may not have money for any food, “Sometimes you broke. You don’t have money to buy food in the house” (Pat-RC1), limiting their ability to adhere to medication that was required to be taken with meals. Some had no choice in their diet selection, noted one domestic worker, “They [my employers] give me food after every night they give me a plate. I don’t cook for myself…. I feel I don’t have a choice” (Pat-CG1). PLWH recognized their lack of agency, of the harms caused by structures beyond their control, which only further fueled their anxiety. Describing this tension, a PLWH noted, “When my blood pressure is skyrocketing that’s when they tell me to calm down and then it upsets me even more if they tell me to calm down because that is, that is life” (Pat-YV1).

As a third pathway to increased syndemic disease burden, HCP reflected a lack of what Lisa Bowleg terms structural competency, in that they disregarded how social, economic, political, and institutional factors facilitate and hinder health outcomes for patients [82]. HCP perceived that despite the harms imposed by structural impediments including the inability of patients to implement lifestyle changes given social and structural limitations and the difficult choices patients had to make regarding treatment adherence and healthcare management, patients were directly responsible for managing their health conditions. HCP believed that risky lifestyles, such as early sexual debut, inconsistent condom use, or poor diet caused disease, noting “Children are very promiscuous now a days. Not at all like in my years in high school when smoking was a disgrace. Now a days it is more about please wear a condom” (RC1), “Everybody, they are eating junk food. They are not looking after their diet” (SH1). Remaining adherent to treatment and routine clinic visits was regarded as highly problematic, with HCP noting, “Adherence, they just don’t understand…their meds are not a priority” (RC1), “They refuse [to take their medication], especially the males patients. They say, ‘I don’t want to come to clinic. I don’t want to wait’” (ES1). HCP felt that patients needed to figure out how to manage their own health conditions expressing, “Patients should be taking more responsibility. We say to them, ‘We are here to give you your medication, we are here on the day you are supposed to come for your medication so you have got no excuse’” (RC1).

Discussion

Multiple concurrent epidemics of chronic diseases are increasingly a heavy burden in many low- and middle-income countries, a result of improved survival, HIV-induced inflammation, and HIV treatment toxicity. These comorbidities frequently cluster in socially vulnerable populations experiencing structural violence. While recognized, the combined impact of a multitude of social and structural vulnerabilities on disease clustering has been understudied. Existing scholarship rarely looks beyond individual social and structural factors influencing disease outcomes, nor does it consider the combination of social vulnerabilities on clustering comorbid diseases.

In this study, income uncertainty was indicated as the primary social vulnerability influencing chronic disease management. Income uncertainty resulted in missed appointments as PLWH could not afford to lose current jobs or income from work, needed to move temporarily for employment opportunities, or lacking employment did not have a means to travel to the clinic or purchase healthy food or food necessary for disease management. These findings are consistent with research examining the implementation of the Integrated Chronic Disease Management model in South African clinics, which found patients challenged with economic burdens, non-disclosure, and lack of support programs [68, 83]. An ethnographic study of PLWH in Soweto, South Africa, found that economic factors such as costly transport to the hospital and food insecurity impeded management of HIV and comorbid diabetes [84]. A study of PLWH with diabetes in Cape Town also found that economic resources and nutritional requirements were predictors of patients self-care [85]. A study of patients with hypertension in rural South Africa found that poverty was a major vulnerability limiting choices for nutritious foods, recreational physical activity, and timely access to health care [86].

While income uncertainty was highlighted as a significant vulnerability in this study, numerous interacting social and structural vulnerabilities contributed to treatment non-adherence, disease pathogenesis, and increased syndemic disease burden. The identified pathways to heightened syndemic disease burden included chronic stress induced by structural violence, reduced self-efficacy, and limited provider structural competency. The constant stress related to income, food insecurity, housing/living status, threat of violence and stigma, maintaining clinic appointments, and medication management generated anxiety in PLWH is known to result in hormonal imbalances, heighten sympathetic nervous system responses, raise blood pressure, obesity, and immune system disruption, as well as disrupt access to care. In addition, internalized stigma related to HIV-status and limited informal or formal support to assist with the challenges of daily living reduced perceptions of agency and self-efficacy in chronic disease management. Studies examining non-communicable disease syndemics among low-income populations in South Africa, Kenya, and India similarly found that emotional distress can significantly disrupt chronic disease management [51, 62, 87]. The implications of stigma on health-seeking behavior and access to healthcare have been widely researched, with results indicating reduced social support directly and indirectly influencing poor treatment adherence [69, 88, 89]. Finally, limitations in available resources and staff resulted in long wait times at clinics, insufficient amount of time spent with a HCP, and high burdens on HCP. Likely a consequence of the high patient load and limited resources, HCP displayed a lack of consideration of how social structures undermine the capacities of patients to access healthcare, adhere to treatment, and modify lifestyles.

This study has several limitations. First, the study is limited to health centers in an urban space in a single country. PLWH in rural areas are likely to have unique social and structural vulnerabilities. Second, we recruited only one male PLWH to participate. While male PLWH are likely to experience syndemic disease burden differently than females, the male PLWH in this study presented no unique experiences, indicating the same challenges of managing chronic disease as the female PLWH interviewed. Furthermore, his experiences were reflected in the HCP comments and in the relevant literature. Additional male voices may have identified unique challenges. Third, our sample of health center staff included only those available, potentially over or under sampling HCP who were willing to disclose their frustrations and prejudices. It is possible that HCP were more comfortable highlighting certain issues (patient non-compliance) over others (provider lack of training and fatigue) that could jeopardize their standing if discussed with supervisors. PLWH likely reported more favorable behaviors although PLWH acknowledged defaulting on their treatment. Overall study results are consistent with research examining the impact of social and structural vulnerabilities on individual diseases in isolation.

Recommendations

To address these pathways to increased syndemic disease burdens, scholars have recommended the integration of standardized mechanisms to operationalize social and structural vulnerabilities within clinical practice to help HCPs think more clearly, critically, and practically about the structural violence experienced by patients [90]. For example, research suggests that minimal additional costs are required for improving patient flow and managing bookings, thereby reducing wait times and patient loads [91]. As pharmaceutical distribution has been outsourced, although it remains imperfect, there should be more consideration of outsourcing other services, such as vitals and blood draws [92]. Patients could be monitored based on laboratory values and called into the clinic on an as-needed basis, thus reducing the patient load in the clinic. Research on task shifting involving lay health workers in chronic care management suggests that success is possible and effective in reducing patient loads with appropriate clinic management [93]. In addition, expanding access to social resources both within and outside the healthcare setting, such as increasing the availability of social workers and mental healthcare providers, engaging with non-government organizations offering food, clothing, pro-bono legal and immigration services, and resources to assist in applying for children and disability grants and housing, could collectively address patients’ social and structural vulnerabilities allowing HCP to focus on disease management.

Conclusion

Social and structural vulnerabilities affecting comorbid chronic diseases need to be more directly considered as part of healthcare management to meet the unique health needs and challenges of PLWH. To address these vulnerabilities, HCP should be more structurally competent. This should include integrating more formal mechanisms to help HCP recognize structures and interlocking oppressive social structures that shape syndemic health burdens, develop structural humility, and think practically about the ways healthcare institutions and social structures undermine the capacities of patients to manage their health. In addition, social support systems need to be expanded to ensure PLWH have access to material, economic, social and healthcare resources needed for complex disease management.

Author contributions

N.B. and S.L.-E. conceptualized the study. A.N. and S.N. collected all primary data from patients. N.B. collected all primary data from providers. N.B. wrote the main manuscript text. All authors reviewed the manuscript.

Funding

This work was supported by seed funding from the Institute for Collaboration on Health, Intervention, and Policy at the University of Connecticut and the National Heart, Lung, and Blood Institute at the National Institutes of Health (1UG3HL156388-01).

Data availability

Data is available upon request, contact Nicola.Bulled@uconn.edu.

Declarations

Ethics approval and consent to participate

This study was approved by the Ethics Boards of the University of Connecticut (H23-0309) and the University of Witwatersrand (M240424 M240621-A-0001), in accordance with the relevant guidelines and regulations under the Declaration of Helsinki. All participants signed a consent form.

Consent for publication

All individual participant details remain confidential.

Competing interests

The authors declare no competing interests.