Abstract
More people with HIV live in South Africa than anywhere else in the world. As people with HIV increasingly confront comorbid conditions, such as Type 2 diabetes, the need for integrated chronic care continues to grow. However, chronic care for patients with multimorbidities is limited in many public hospitals in South Africa. This ethnographic study describes patients’ experiences seeking care for comorbid HIV and diabetes at a public tertiary hospital in Soweto, South Africa, and self-management at home. Findings illustrate how fragmented care, multiple clinic appointments, conflicting information, and poor patient–provider communication impeded patients’ access to care for their multimorbidities. Socio-economic factors such as poverty, costly transport to the hospital, and food insecurity impeded management of multimorbidities. Integrated care for patients with multimorbidities in Soweto is imperative and must recognize the critical role social and economic conditions play in shaping the experiences of living with HIV, diabetes, and their overlap.
Introduction
I am paying rent but at the moment, hey, I am owing lots of money, I don’t sleep at night, everyone is looking up on me [. . .] my children, my sister, my sister’s children. My sister is also diabetic; she is not working and depends on me. When will I ever think of my diseases? (A 60-year-old woman with diabetes and HIV, Soweto)
Like many other patients seeking care at public hospitals in South Africa, this introductory case highlights how medical care in Soweto, a large township in Johannesburg, South Africa, cannot overlook underlying social and economic stressors that impede patients’ abilities to manage their one, two, or more co-occurring conditions. Managing multimorbidities—coexistence of two or more chronic conditions in the same individual (World Health Organization [WHO], 2016)—can be overwhelming because, not only are there competing self-management tasks but also numerous social and financial costs (Liddy et al., 2014). In many ways, these social and medical challenges “cascade” together and feed off one another, such as the compounded effects of disability, pill burdens, new self-care routines, and recurrent clinical visits (Manderson & Warren, 2016). This can also be challenging for patients living in contexts like Soweto, where access to health care for people with multiple chronic conditions is limited (Lopes & Norris, 2013). Scholars have described how patients with multimorbidities seeking care within constrained settings face “a virtual cascade of medical, emotional and social hardships” (Sells et al., 2009, p. 95), or “recursive cascades”—interweaving and compounding of social and health problems at multiple levels (Manderson & Warren, 2016, p. 491), or a “syndemics”—clustering of two or more diseases that interact biologically and are driven by social and economic inequalities (Mendenhall et al., 2017).
Social, political, and economic hierarchies, which cultivate structural vulnerability, influence individual or group risks for negative health outcomes among people with multiple clustered social and medical conditions (Holmes, 2011; Quesada et al., 2011). Quesada and colleagues (2011) have described structural vulnerability as “a positionality that imposes physical/emotional suffering on specific population groups and individuals in patterned ways” (p. 339). Among Black South Africans, historical racial segregation, intensified by apartheid, created an inherent structural vulnerability, which has contributed to social and economic inequality in places such as Soweto (Coovadia et al., 2009). These inequalities have shaped how many Black South Africans residing in Soweto eat and move, exemplified by decreased physical activities, increasing consumption of high-energy processed foods (Wrottesley et al., 2019), leading to the massive increase of non-communicable diseases (NCDs; Micklesfield et al., 2013).
Structural vulnerability is also perpetuated through a financially strapped and overburdened public health system in Soweto (Coovadia et al., 2009). For example, the health care system in South Africa is inequitably structured (Ataguba & McIntyre, 2013), where public hospitals are weak and under-resourced, compared with private hospitals (Fusheini et al., 2017). Yet, the majority of uninsured Black South Africans largely rely on the public health system for diagnosis, treatment, and care (Naidoo, 2012), and this system provides longer waiting times, poor provider–patient relationships, and fewer screenings due to lack of equipment (Ameh et al., 2017) leading to poor health outcomes (Fusheini et al., 2017). In this way, structural vulnerability fundamentally shapes how people access and engage with the health system in terms of the financial cost of care-seeking, unresponsive health care systems (Horrell et al., 2017; Matima et al., 2018), social cost of caring for family members, and emotional cost of managing food as well as the physically disabled body (Mendenhall et al., 2017).
These inequities are deepened by health disparities between the rich and the poor. For instance, the prevalence of HIV (human immunodeficiency virus) in South Africa is estimated at 13% of the total population (Statistics South Africa, 2018), and up to one in four people in townships like Soweto. Type 2 diabetes (hereafter, diabetes) prevalence is estimated to be 5.2% (International Diabetes Federation, 2017), and up to 12% in Soweto (Crowther & Norris, 2012). The clustering of these diseases is common especially among the poor, in low urban socio-economic settings (Mendenhall & Norris, 2015), and in rural areas (Chang et al., 2019), compared with higher income neighborhoods. In these contexts, diabetes has become syndemic with HIV, fueled by social and political factors, and further compromised by social and economic impacts of individual and collective diseases (Mendenhall et al., 2017). These factors underscore the need for medical care that recognizes social inequities while tending to the complex and interactive medical conditions people face concurrently while seeking care.
Integrated chronic care has been proposed as a potential way to mitigate the syndemic effects of comorbid chronic conditions such as HIV and diabetes. Integrated chronic care has been defined by the WHO (2008) as “the organization, management and coordination of health services so that people get the care they need, when they need it, in ways that are user-friendly, achieve the desired results and provide value for money” (p. 1). In light of this, the National Department of Health (NDoH) in South Africa introduced the integrated chronic disease management (ICDM) framework between 2011 and 2013 (Mahomed & Asmall, 2015) as a response to the dual burden of disease. A national pilot of the ICDM model commenced in 42 selected Primary Health Care (PHC) facilities in three out of nine South African provinces, that is, Gauteng, North West, and Mpumalanga. The ICDM model has three key components: health facility level (entails facility reorganization that aims at improving operational efficiency); community component (aims at facilitating self-management), and population component (aims at health promotion and population-level screening) (Mahomed & Asmall, 2015). The main aim of the ICDM model was to leverage the innovative HIV treatment program for NCDs to improve the quality of chronic disease care and health outcomes of chronic disease patients. Despite these improvements, the ICDM model is underdeveloped in most public health care facilities due to health systems’ challenges (e.g., staff shortages, inadequate equipment; Ameh et al., 2017; Matima et al., 2018), and care for patients with multiple chronic diseases is still fragmented and uncoordinated (Kawonga et al., 2013).
Although few studies have evaluated the ICDM model in South Africa, these studies have largely focused on the clinical components of integrated care (Ameh et al., 2017). However, understanding a truly integrated chronic care model requires investigating the experience of chronic conditions and care for social and medical problems from multiple perspectives. In this study, I use an ethnographic approach to explore patients’ experiences of accessing health care for comorbid HIV/AIDS and diabetes in Soweto, and how they self-managed their concurrent chronic illnesses at home. Considering how social, economic, political, and health problems cluster together to influence individuals’ illness and health may inform chronic care interventions in resource-constrained settings in Africa.
Method
Study Design: An Ethnographic Approach
This study is part of a larger ethnographic research conducted between April 2018 and June 2019 that explored health and health care for patients with both diabetes and HIV at a large public tertiary hospital in Soweto, South Africa (Bosire, Mendenhall, Norris, et al., 2020). The study was approved by the tertiary hospital research committee and the Human Research and Ethics Committee at the University of the Witwatersrand (No. M171125). The tertiary hospital (commonly known as “Bara”) provides specialist services and is one of the largest hospitals in the world and serves residents of Soweto and surrounding areas. Soweto is located about 15 km south west of Johannesburg’s central business district, covers more than 200 km2, and has a population of approximately 1.3 million (Statistics South Africa, 2011).
I conducted life history narrative interviews (see Anderson & Kirkpatrick, 2016) with patients in the clinic and spent time observing their lives in their homes. Spending time with patients in their homes and walking with them through their daily activities provided a more detailed perspective on their lives, health, and self-care.
Sample Selection
I used purposive sampling to recruit 15 patients (eight women and seven men) managing comorbid diabetes and HIV from a diabetes/endocrine clinic at a tertiary hospital in Soweto. I invited patients who were in the queue to a private room within the clinic, where I explained the purpose of the study. These patients had visited the hospital for routine clinic appointments. Those who were willing to participate were screened for eligibility according to my inclusion criteria: patients who were above 30 years (this was the youngest age that was reported in the clinic for diabetes as at the time of the study) and receiving treatment for both HIV and diabetes. Those who qualified for the study were asked if they were willing to be interviewed on the same day or later. I set future dates for an interview with eligible patients who accepted to participate later.
Data Collection
Study participants resembled the broader population of Soweto: they were ethnically and linguistically diverse (English, Sesotho, Setswana, Xitsonga, isiXhosa, and isiZulu), low and middle income, and identified as Black. Participants were aged between 40 and 70 years, more than half were unemployed, and only a quarter had completed secondary school. All participants signed a consent form after reading the information sheet and understanding the purpose of study, before they took part in the interview. An interview guide with both closed and open-ended questions was used. Interviews began with a short survey about participants’ socio-demographic characteristics such as age, education status, and marital status. Thereafter, participants took part in an in-depth life history narrative interview that addressed family life, chronic illness, health care experiences, and self-management. Targeted questions included the following: “Can you tell me about your childhood?” “Your family?” I then shifted the interview to address participants’ understanding of health, illness, and disease management, including questions like “Where do you go for your health care?” “How do you manage your illnesses at home?” At the end of each interview, I summarized key emerging issues and discussed with the participant to ensure that each participant confirmed the interpretation of issues recorded. All interviews were audio-recorded and lasted for an average of 90 minutes. Interviews were conducted in English; however, a trained multilingual research assistant acted as a translator in cases where participants expressed themselves using local languages. Following each interview, I wrote extensive field notes, highlighting the key themes (e.g., experience accessing care, number of clinics attended, patient–provider interactions) that emerged. After interviews at the clinic, I sought consent from participants to be visited at home later. All participants were given ZAR100 (US$5.68) transport back home.
Home ethnographic visits were carried out on different dates. Thirteen participants were available for home visits, two could not be reached. These participants were visited after signing a consent form to be visited. During home visits, I was always accompanied by a multilingual research assistant who helped in translations. The research assistant was trained on principles of research ethics, including maintaining participants’ confidentiality. The aim of home visits was to understand participants’ lived experiences with chronic conditions and illness management. Observations were conducted at each participant’s home—lasting between 5 and 6 hours per participant. Key areas of interest were activities that participants performed in relation to self-care—including diet, physical exercise, medication adherence, and other non-medical activities and relationships, for example, whom they lived with at home.
This being an ethnographic study, issues around reflexivity and subjectivity were considered, as extensively described by van der Geest and Finkler (2004). First, being an “outsider” (non-South African) may have influenced my views on patients’ access to care and self-management. In addition, language barrier and use of an interpreter may have distorted participants’ intended use of words. However, a constant thoughtful process in reviewing field notes, observations, and interviews with the participants and other researchers involved in this study allowed flexibility in data collection, analysis, and reporting of study findings (Reeves et al., 2008).
Data Analysis
Data collection and analysis were conducted concurrently. Data from all interviews were transcribed verbatim. I took an inductive approach to analyzing data because, I wanted to uncover descriptions of chronic care experience, which entailed access to care and self-management at home. This approach was a systematic, iterative, and reflexive process of collecting and analyzing data. Initially, I categorized data (coding) from transcripts and field notes based on phrases or patterned meanings that related to the study objectives. More categories were added as new ideas emerged from the data. I cross-checked these categories, compared with new data and refined to identify similarities and differences. Moving back and forth and evaluating the already grouped data helped me to come up with new research questions and observations. This process also facilitated my own interpretative judgment about when to stop coding and move to theme generation (see Braun & Clarke, 2019). I then involved my research assistant who had extensive knowledge of Soweto, and three other researchers (study supervisors) who are experienced qualitative researchers to review the data (Braithwaite et al., 2017). These researchers collaboratively reviewed the data for further analysis and classifications. This provided an opportunity for me to address any questions and resolve any identified discrepancies, thus enabling transparency and precision of data. Based on collaborative agreement on data analysis, I came up with two main themes: (a) patients’ experiences accessing chronic care in Soweto and (b) patients’ experiences of self-management at home. Within each main category, there were numerous sub-themes which I will unpack in the following section.
Results
More than half of the participants were unemployed, and three quarters reported household income ranging from ZAR1,000 (US$60.72) to ZAR2,000 (US$121.45) a month. Five participants who were above 60 years of age reported that they received government social grants. However, the grant was said to be insufficient in taking care of recipients’ social and medical needs—given that most households depended on the grant and were not only poorer but also larger in size (Burns et al., 2005). Other than HIV and diabetes, participants also reported that they managed other chronic illnesses. Hypertension was commonly reported by almost half of participants, followed by depression and arthritis. Participants revealed that they had at least two people in their households who also managed chronic illnesses.
In what follows, I present study findings under the two key emerging themes: (a) patients’ experiences accessing chronic care in Soweto and (b) patients’ experiences of self-management at home.
Patients’ Experience Accessing Chronic Care in Soweto
Findings showed that patients experienced many challenges accessing care for their multiple illnesses in Soweto. First, chronic care at the tertiary hospital was said to be fragmented and uncoordinated. This was partly due to the structure of the tertiary hospital that offered specialty care, as opposed to managing different illnesses in one place. A middle-aged participant said, “I always get my ARVs from Ntabiseng clinic in Bara, and my diabetes pills from the diabetes clinic.” Observations in this clinic revealed how patients with multimorbidities moved from one clinic to another for consultations and treatment, a process that was said to be overwhelming and confusing (see also, Bosire, Mendenhall, Norris, et al., 2020). Although diabetes and hypertension were managed together in one clinic, patients had to visit other clinics for any other illness that they had, including diabetes complications (e.g., podiatry and eye clinics). In addition, some patients attended both PHC clinics and tertiary hospital—although comprehensive HIV care was provided at PHC clinics, comprehensive diabetes care was only provided at the tertiary hospital. Some of the reasons provided for not accessing comprehensive diabetes care at the PHC clinics included drug stock-out, lack of doctors, and unskilled nurses (see also, Bosire, Mendenhall, Norris, et al., 2020). This demonstrates that diabetes care has not been fully integrated in PHC clinics in Soweto. This then becomes problematic when care is uncoordinated and providers at tertiary hospital fail to know what other care a patient is receiving in other clinics.
Second, distance to the tertiary hospital and transportation costs were also described by participants as factors that hindered them from accessing care. One participant said, “Transportation is difficult because I am not working. I attend four clinics [. . .]. Today I am here, then next month I’ll attend two other clinics.” As such, some patients defaulted their clinic appointments. Non-attendance to clinic appointments further led to other compounding issues, including poor provider–patient relationship. In this regard, some participants revealed that they were shouted at by the nurses or clerks whenever they showed up at the clinic, a factor that constrained patient–provider relationship: “If you come late or fail to come, the nurses will be shouting at you. But nobody really cares to know why I did not come. That’s why I choose to stay at home some clinic days.” Another participant said, “I came to the clinic after two months and the nurse asked me to wait in the queue until all patients for that day were attended to.”
Finally, visiting numerous uncoordinated clinics led to patients receiving conflicting information from clinicians—participants revealed that clinicians rarely collaborated or communicated while managing their multiple illnesses (see also, Bosire, Mendenhall, Norris, et al., 2020). One participant said, “The problem is that one doctor will tell you to do this and another asks you to do a different thing.” A 64-year-old woman with multimorbidities (HIV, diabetes, hypertension, and arthritis) explained her case as follows: I see different doctors for each disease. Last week, the Rheumatologist told me that my bones are getting closer to each other, they have inserted metals in my right foot. When I attended the diabetes clinic [earlier], the doctor asked me to exercise because I was adding more weight, but I can’t exercise because of the surgery they did on my leg. My ARVs have amplified my appetite. I eat a lot and I am worried about my weight too. Last time I asked the endocrinologist what else I could do to deal with my appetite, my weight gain and inability to exercise, but he just looked at me without saying a word.
Similar sentiments were shared by other participants who reported that they left the clinic before all their questions were fully addressed: “I don’t think they want to hear all these stories; they are busy; it’s just about the disease and medication, that’s all.” In this context, participants expressed their frustrations and confusion, not knowing what to do next in terms of managing their multimorbidities after they left the clinic.
Patients’ Experiences of Self-Management at Home
In this section, I use two cases, whose stories reflect the complexities of chronic multimorbidity, structural vulnerability, caregiving roles, and chronic care in Soweto. Stories from the two interlocutors that I will name Participant X and Participant Y (Pseudonyms) reflect key emerging themes in self-management, from all participants in this study. Participant X’s case demonstrates the clustering of social-economic, political, and medical factors which underscores syndemic suffering in Soweto. The second case (Participant Y) demonstrates how patients navigate self-care and caring for others in the context of multimorbidity and structural vulnerabilities. These two cases tie together to reflect the complexities and overlaps involved in chronic care (both medical and social) in Soweto.
Intermingled thread of socio-economic factors, political factors, and chronic illnesses
I first met Participant X, a 46-year-old woman, in the diabetes/endocrine clinic at a tertiary hospital where she received care. Participant X does not understand English, so she is accompanied by her twin sister who does the interpretation. This is how she survives during most clinic days. Participant X lost both her parents to HIV/AIDS—her father (a South African) and mother (from Lesotho) died when she was 6 and 7 years, respectively. Despite her father being a South African, Participant X provides an account which led to her and her siblings from being excluded as South African citizens. She narrates how her father, an outspoken person and who was against the Apartheid regime, was forced to flee South Africa for fear of his life. Many years later, her family relocated back to South Africa and settled in Soweto. Unfortunately, her parents died before they documented them as South Africans. Participant X goes on to explain how lacking the necessary documents that would qualify her “citizenship” has led to her marginalization and inability to access basic facilities provided by the South African government: “That is why our children have been denied child support grant. I also applied for a disability grant, but I was not given because, I lack the required documents.”
Participant X contracted polio when she was young and this paralyzed one of her legs. Many years now, she cannot stand on her own. Indeed, Participant X is supported by her twin sister whenever she walks, she is not using crutches—perhaps she cannot afford them. Participant X lives with her twin sister, her younger sister (27 years), her two children (aged 9 and 7), and two other children from another sister. In total, seven people live in a single-roomed shack in a township in Soweto. Her younger sister is mentally ill, and they are yet to figure out which illness; but in 2015, Participant X says, “She became violent and was admitted to Bara, [. . .] she sometimes uses some injections to tranquilize her.” Participant X herself lives with HIV, diabetes, and hypertension. Her twin sister too does not have it any easier. She narrates her story: “I am also sick, I have HIV, hypertension and breast cancer.” Participant X’s household has three individuals managing different chronic illnesses. In her account, Participant X narrates how managing her multiple chronic conditions is difficult. She says, “I can’t walk by myself; I always need support. This disability has made it difficult for me to get a job. I also depend on my twin sister who runs a small business at home.”
I later learn that Participant X’s twin sister is a sangoma (traditional healer). She conducts her business from the same single-roomed shack where they live in, making an average of ZAR400 (US$24.92) a month, which enables them to get by. When I ask Participant X to describe what she eats at home, she says, Nobody is guaranteed of eating in our house. We depend on a feeding program in a nearby public primary school. We walk to the school, eat and come back home [. . .]. On clinic days, we miss the food because, by the time we get back from the clinic, [we find that] all food has been finished by school children.
Initial meeting with Participant X at the clinic provided a snapshot of how her physical illnesses were compounded by an array of socio-economic and family issues. Five months later, my research assistant and I embark on a journey to visit Participant X at her home in Soweto. Participant X and her sisters are renting a small single-roomed shack behind a main house. Although the shack seems to be of average size from the outside, the inside is too small. This day, Participant X’s twin sister is not at home. She has been admitted at Johannesburg General Hospital for her chemotherapy sessions. Participant X is at home with her younger sister (who is mentally sick), and their children have gone to school. The last time I saw her at the clinic, she looked strong and healthy. Today, her hair is covered with an old white and pink checked scarf, and she has also lost some weight. Despite this, Participant X is now the caregiver of her mentally ill sister. She says, “Although she (sister) is calm now, someone must be looking after her.” These introductory remarks are very troubling and leave me wondering how Participant X is managing herself as well as taking care of her sick sister. Participant X continues, Life has become miserable since my sister got admitted at the hospital. We all depend on her. My landlord has knocked several times, she wants her rent, but I have nothing [. . .]. I am tired of life. I have thought of killing myself, dying and forgetting my troubles. Even today, I feel like killing myself, but I wonder who will take care of my children and sisters if I die?
We spend some time indoors trying to catch up with how she manages her conditions. Our conversation is quite informal. Participant X continues, “These days, my CD4 count has improved and I collect my ARVs from a local clinic in my neighborhood. However, I still attend Bara for my diabetes care because, my diabetes is uncontrolled.” Participant X’s house is about 30 km to the tertiary hospital where she gets her treatment. She says, “Travelling to the hospital is so difficult, I have to pay ZAR100 (US$5.68) at every clinic visit.” When she cannot afford this, she says, “I don’t go to the hospital. I just stay at home. Sometimes, I use the traditional medicine that my sister sells.” Participant X is stressed with her multiple illnesses. Worse still, she is more stressed because of her sick sisters, inability to pay rent, and lack of food—she cannot afford even the cheapest foods; “This is why I have to skip taking my insulin because my body gets weak, I shake and feel like going mad,” she explains. Despite these challenges, “The nurses and clerks at the clinic are always shouting at me without giving me a chance to explain why, why my diabetes and blood pressure are getting worse.”
The clustering of social-economic, political, and medical factors as exemplified in Participant X’s case underscores syndemic suffering in Soweto (Mendenhall et al., 2017). These factors tend to interact synergistically in consequential ways, having a substantial impact on individual health, that of their family, and the whole population (Singer et al., 2017). Participant X asserts that lacking basic needs, such as food, has influenced her non-adherence to diabetic medication. Also, she only attends the clinic whenever she can afford transport. An overlap of medical and social conditions is driving Participant X into depression and suicidal ideations. As Manderson and Warren (2016) posits, the everyday circumstances where individuals live in (e.g., poverty) make them vulnerable to chronic diseases such as diabetes and depression. These diseases tend to interact both biologically and socially. For example, studies have shown that diabetes and depression maintain a bidirectional relationship (Holt et al., 2014), by which diabetes contributes to depression (Nouwen et al., 2010) and depression in those with diabetes is associated with non-adherence to diabetes treatment (van der Feltz-Cornelis et al., 2010). The intersection of these diseases is then exacerbated by poverty, which inhibits them from accessing care and adhering to medications or making recommended lifestyle changes difficult (Manderson & Warren, 2016).
But Participant X’s case is even deeper; her structural vulnerability is conjoined with the apartheid regime and current ethnic discrimination that denies her “citizenship.” In this way, lacking the necessary documentation that would qualify her as a South African denies her the opportunity to access basic needs, including those provided by the government (see also Quesada et al., 2011). South Africa’s historical legacy of the apartheid regime played a key role in shaping structural vulnerabilities that are witnessed in society today (Coovadia et al., 2009), which continue to shape people’s access to basic resources for health and health service. Other structural vulnerabilities reflected in Participant X’s case include poor housing and unemployment, all which negatively affects her comorbid suffering.
Participant X’s case is not unique; many other interlocutors in this study revealed numerous socio-economic hardships, including food insecurity and unemployment, which influenced how they managed their illnesses. Despite this, health care providers lacked this knowledge. For example, earlier interviews with health care providers revealed that many were not aware of the socio-economic challenges that the patients experienced (Bosire, Mendenhall, Norris, et al., 2020). In addition, providers never took time to understand patients who frequently skipped their clinical attendance. Furthermore, observations at the clinic revealed how clinicians and dieticians were more focused on teaching patients how to manage their illnesses without considering patients’ contextual factors (such as income, availability of food; see also, Bosire, Mendenhall, Norris, et al., 2020). These findings parallel other studies in South Africa, which have revealed that health care providers manage patients (using biomedical frameworks) without recognizing the socio-cultural aspects of patients’ lives (Moola, 2019) or how these structural problems influenced development of chronic diseases in the first place (Ravn et al., 2016). Consequently, providers would interpret non-adherence to medications or inability to pursue healthy lifestyle modifications to be the willful moral choices of their patients rather than effects of social structural inequalities (Bourgois et al., 2017).
The ICDM model, which was implemented in South Africa, has a community-level component that aims to facilitate assisted self-support and empowering individuals to take responsibility for managing their own conditions (Mahomed & Asmall, 2015). This component seemed to be underdeveloped or lacking in Soweto. For instance, none of the participants in this study reported having received any clinical support while self-managing their illnesses at home. Observations at home and the long hours I spent with many patients revealed how they poorly adhered to their medication. Yet, many lacked knowledge or clinical support on what they needed to do to be healthy. Findings from this study highlight how individuals living in poor settings have poor access to health care, fewer opportunities to engage in preventive health care, as well as disease management programs (Horrell et al., 2017). This necessitates a need to develop community support systems that will link community with hospital, such that patients like Participant X can get the required support in time.
Like Participant X, many other participants revealed that they had family members with chronic illnesses. In this context, self-management was challenging given that there were limited shared resources among all family members who were sick, as described in the second case below.
Managing self and others in context of multimorbidity and structural vulnerabilities
Participant Y is a 67-year-old man who lives in Soweto, together with his wife and 17-year-old son. He suffers from three medical conditions: HIV, diabetes, and hypertension. His wife suffers from HIV and psychosis. Participant Y was diagnosed with HIV 16 years ago in a private clinic in Soweto. Five years later, he was also diagnosed with diabetes and hypertension. He says, Managing the three conditions is stressful, especially now that I am not working. I also must manage my wife’s two conditions. In total, it’s like I am managing five diseases [. . .] this is too demanding both financially, physically and emotionally.
Participant Y is unemployed and relies on government’s social grant worth R3,400 (US$212.43) for both himself and his wife—each earns R1,700 (US$106.22) per month. However, he adds that, The money is not enough. I can’t even afford my rent and diabetes foods. I also need to buy foods and medication for my wife. I only try to buy whatever I can, but I never get to achieve what the doctor recommends [. . .]. Although I adhere to my medications, I do not see much changes. My diabetes and blood pressure seem to be getting out of control.
To deal with these challenges, Participant Y has opted to pay for a gym, which he finds to be affordable at R340 (US$22) a month, compared with buying healthy foods which he says “are expensive.” For Participant Y, he can eat unhealthily but must engage in physical exercise. Participant Y spends more time supporting his wife than managing his own conditions. He vividly describes his daily routine as follows: I usually start my daily activities at six o’clock in the morning. First, I take my bath, brush my teeth, and prepare breakfast for my wife and my son. My wife and I will then eat our breakfast at around 8.00 a.m. and take our medication. Thereafter, I will clean the dishes and house, and when done with domestic chores, I will cook a meal for lunch and then rush to the gym. [. . .]. In the evening, I will leave my wife at home for a moment and step out to meet my friends at a nearby shopping center, where we would play cards and tell stories [. . .]. Later, I would rush back home to prepare dinner for my family. I also ensure that my wife takes her medication before we retire to bed [. . .].
Although Participant Y looked strong and energetic, his description of day-to-day activities and taking care of his wife seemed quite demanding. He continues, “I visit two separate clinics for my diseases: HIV clinic and a diabetes clinic for diabetes and hypertension.” Participant Y attends these clinics every 3 to 4 months as recommended by a physician. As if this is not enough, he must take his wife to an HIV clinic and occasionally to psychiatric clinics. This is problematic, because “sometimes, my wife’s clinic appointments collide with mine.” He also adds that, “I must pay transport for all these clinic visits.” To Participant Y, managing his wife is more engaging and draining than managing his own conditions, he says, “I spend much of my time on her, sometimes I forget about myself, my medications, this has affected my health.”
Many other interlocutors reported challenges of self-care while caring for others (in terms of food, physical support, or clinical visits). Specifically, managing multiple chronic medical and social conditions within contexts of financial insecurity compounded the challenging circumstances that individuals like Participant Y encountered, leading to a vicious cycle of poverty and poor health (see also, Barrett et al., 2014; Bosire, Mendenhall, & Weaver, 2020; Jenkins et al., 2009). Jenkins and colleagues (2009) also reported that individuals who experienced a “strain” associated with caregiving responsibilities had significantly higher rates of mortality and poor health. This is similar to other recent studies that have demonstrated how caregiving burden can have a negative impact on individual’s physical and mental health, as well as social and financial burden (Jagannathan et al., 2014; Kızılırmak & Küçük, 2016).
Allocating time to manage self, taking care of others, as well as attending to other household duties was found to be difficult. This was quite disturbing for individuals like Participant Y who spent more time taking care of other family members rather than focusing on their illnesses, placing their own health and well-being at risk. Corbin and Strauss (1985) have described chronic illness in terms of work, including illness-related work (such as managing symptoms, going to hospital), everyday work (such as household tasks, child rearing), and biographical work (such as managing emotions or identity). “Management of an illness in the home,” they write, “is not accomplished without difficulty and a great deal of effort, unless the regimens are relatively simple and do not greatly interfere with the normal flow of life” (Corbin & Strauss, 1985, p. 172). A lack of balance between the three types of work often leads to poor health outcomes.
Discussion and Conclusion
Findings from this study highlight how social, economic, political, and medical complexities come together to shape health and illness, which underscores syndemic suffering in Soweto. In other words, the cases provided demonstrate how chronic diseases, such as HIV and diabetes, interact with one another within a context of poverty, inequality, and inequitable access to health care (see Mendenhall et al., 2017). Elsewhere, studies have pointed out that chronic conditions are rarely an isolated problem, but rather, are situated in and precipitated by a complex mix of biological, social, and economic factors (Manderson & Warren, 2016). Considering how social and health problems cluster together and mutually exacerbate one another is key in understanding and designing care and management of patients with multimorbidities. As such, care for multimorbidities must take an integrated approach which considers patients’ socio-economic factors, rather than viewing diseases as isolated from the context in which they occur.
Interlocutors in this study illuminate lack of integrated or holistic care provided to them, for their chronic multimorbidities. Integrated and coordinated management of clustered conditions requires care that is centered on patients’ needs, so that people get the care they need, when they need it and in ways that are user-friendly (WHO, 2008). Previous studies in public hospitals in South Africa have reported lack of integrated services for chronic diseases (Ameh et al., 2017; Matima et al., 2018). This has been attributed to health system challenges such as staff shortages, inadequate equipment, unskilled providers, or lack of multimorbidity guidelines (Ameh et al., 2017; Bosire, Mendenhall, Norris, et al., 2020; Matima et al., 2018). There are also poor developed systems that link community care with formal public health care services (Matima et al., 2018). Lack of integrated care is particularly challenging for patients with concurrent HIV and diabetes—who require routine medical care and treatment for each singular disease, costing time, effort, and lost wages (Mendenhall et al., 2017). This problem of non-integration and disease-specific clinics is not unique to South Africa; indeed, it reflects biomedical systems around the world, which systematically separates medical problems by disease due to specialties, or medical problems from social problems (Nolte et al., 2012). Lack of integrated care may lead to low quality of care and unnecessary health care spending.
In addition, many participants reported that they defaulted clinic appointments due to distance to the hospital, lack of transport, and poor provider–patient communication. Yet, it was revealed that health care providers largely lacked an understanding of patients’ socio-economic factors that led to, for example, defaulting clinic appointment. This gap may lead to poor quality of care provision (Holmes et al., 2020). Health care providers must take time to understand and engage with the patients during clinical consultations or treatment. Recent studies have revealed that patients are happier when involved in their own care (Harris et al., 2016). However, providers’ inability to engage patients in discussing about their care may not be an individual problem; rather, it is a reflection of how the health care system is structured or functions (Valentijn et al., 2013). Recent studies in Soweto have reported that health system challenges, such as staff shortages, impeded clinicians from providing patient-centered care (Bosire, Mendenhall, Norris, et al., 2020). There is need to address health system challenges, for example, increasing number of trained staff to ensure that providers spend adequate time with the patient and include the patient as an active participant in his or her care. This may ultimately promote the physician–patient partnership in care (Entwistle et al., 2018).
Importantly, access to care and self-management were largely influenced by patients’ socio-economic conditions. For instance, many households had more than one person managing chronic conditions, which underscores the colliding epidemics of chronic diseases in South Africa (Chang et al., 2019). Furthermore, the rapid increase in chronic illnesses at household level could reflect shared social, economic, and familial factors such as poverty or delayed care-seeking due to cost (Cockerham et al., 2017), which underlines the structural vulnerability found in Soweto (Bourgois et al., 2017). Managing multimorbidities within the context of structural vulnerability led to other compounding issues such as stress, depression, anxiety, and suicidal ideations, as demonstrated in Participant X’s case. In other words, findings from this study demonstrate how closely tied stress and distress are to chronic illnesses, and how both physical and mental health are reinforced by socio-economic factors which render individuals vulnerable to other bodily or affective conditions (Mendenhall et al., 2019).
Some patients also spent a great deal of their time helping family members to manage their diseases, while neglecting their own health. This finding is similar to what has been reported in Botswana (Lindsey et al., 2003) and India (Weaver, 2014). For example, in her studies with women with diabetes in Northern India, Weaver (2014) has elaborately described how women were “vulnerable” to exploitation in the context of caregiving responsibilities, and that women prioritized other family’s needs and care while neglecting their own care. In the context of multimorbidities, there is need for researchers to explore further on the issue of caregiving burden, especially among caregivers who are also sick.
Moreover, informal care settings (e.g., community resources/support systems) are important in chronic care and must be linked to the formal health systems (Carpentier & Grenier, 2012; Hayes, 2006). Yet, informal care systems are often overlooked in health policy and practices. There is need to understand the interactions that occur among patients and their social networks away from the clinics, and how individuals balance between family needs and personal needs in context of chronic illnesses and structural vulnerabilities (Mendenhall et al., 2019; Weaver, 2014). This knowledge will help to identify strategies that will make patients active in their own care and practice more effective self-management.
Implications and Recommendations
First, health policy makers must ensure that chronic care models (e.g., the ICDM) are adapted to fit the local context, to take consideration of peoples’ socio-economic conditions. Taking a more holistic understanding of what integration is, and how it must function, will improve care provision to patients with multimorbidities (Holmes et al., 2020).
Second, integrated care should be designed in a way that people get care for all their conditions together (or are able to see multiple clinicians in one clinic visit). This may include prioritizing mental health screening and comprehensive counseling for patients with multimorbidities. This will work better in PHC clinics as opposed to tertiary hospitals which largely provide specialized services. Thus, PHC clinics need to be strengthened in terms of provision of adequate medication, equipment, and increased number of trained or skilled staff who can manage patients with multimorbidities. In addition, integrated care should take cognizance of care across the different levels because, some patients may still require specialist care at a tertiary hospital while also attending PHC clinics. Thus, there is need for collaborative or a team-based care in tertiary hospitals—where specialists must engage and communicate among themselves when managing patients with multimorbidities and engage with providers at PHC clinics to enhance patients’ improved outcomes.
Third, caring for patients requires a shift from the conventional biomedical health care approach to a more patient-centered care (Bosire, Mendenhall, Norris, et al., 2020; Moola, 2019). This may entail strengthening communication within the health system broadly and clinics specifically. If medical settings are too slow to integrate care for patients who present with multimorbidities, then there must be better communication between clinics so that clinicians know when patients visit other clinics, what medicines they are taking, and how competing social and medical demands affect self-management at home. This will minimize conflicting recommendations. In this way, health care providers must understand structural and cultural competence, or what has been recently referred to as “cultural humility” to care for the complex competing demands among patients in places such as Soweto (Metzl & Hansen, 2014).
Finally, policy makers must come up with strategies aimed at sensitizing population about chronic diseases and prevention strategies, as well as addressing structural vulnerabilities. In other words, comprehensive integrated care must take consideration of health promotion strategies including health literacy and behavior change, addressing socio-economic issues (e.g., poverty and housing), and improve access to health care. These strategies are key for improved positive health outcomes and increased wellness among patients.
Study Limitations
Participants were recruited from one tertiary hospital in Soweto; as such, findings here may not be indicative of the experiences of patients in other settings. However, the goal of qualitative research is not to generalize findings (see Tracy, 2010) but to fully explore individuals’ lived experiences. Future studies should explore patients’ experience seeking care for multimorbidities in primary or secondary levels of care. In addition, language barrier and use of an interpreter may have distorted participants’ intended use of words. Despite this, findings reported in this study shed light on patients’ experiences in accessing care and self-management for multimorbidities in Soweto and may be considered as exemplary in other similar settings as well as inform policies on chronic care.
In conclusion, patients with multimorbidities in Soweto continue to experience multiple overlapping social and medical problems, which hinder them from accessing care from the hospitals or self-managing their illnesses at home. Health policies must ensure implementation of integrated care for HIV/AIDS and diabetes in Soweto. This may involve strengthening PHC clinics, through provision of adequate medication, equipment, and increased number of trained nurses to manage patients with multimorbidities. Tertiary hospitals must also be strengthened to provide collaborative or team-based care to patients with multimorbidities. Finally, addressing patient’s structural vulnerabilities is paramount in chronic care. Thus, integrated care must incorporate socio-economic conditions which shape the experiences of living with multimorbidities—this involves both the toll one’s illnesses take on those who love them (with cost of food, medicine, and transport to clinics) and also how the illnesses of others afflict them in their daily lives and personal need to self-manage their conditions.
Footnotes
Acknowledgements
I wish to thank all the participants who accepted to be part of this study, allowed me to visit them at home, and provided sincere responses on their lived experiences with comorbid HIV/AIDs and diabetes in Soweto. I also thank the staff and management of the diabetes/endocrine clinic at the tertiary hospital in Soweto for their support during my ethnographic study. Finally, I wish to sincerely thank my PhD supervisors, Emily Mendenhall, Shane A. Norris, and Jane Goudge, for guiding me in the development of this ethnographic study, and the anonymous reviewers for their excellent contribution to this article.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The South African Medical Research Council funded this study from the core grant to Developmental Pathways for Health Research Unit (DPHRU; SHNS017-NORRIS S MRC 2017-NORRIS S MRC 2017). Edna N. Bosire is supported by the South African Medical Research Council.
