An anthropological perspective on health and healthcare for patients with both diabetes and HIV: the case of Soweto, South Africa

Abstract

Background and rationale: South Africa has the largest and most high-profile HIV epidemic in the world, with an estimated 7.7 million people living with HIV in 2018. The country also has the largest antiretroviral treatment (ART) programme and this has increased life expectancy, reducing the mortality of the affected and consequently led to most people developing comorbidities associated with prolonged survival and aging. Concurrently, South Africa has seen a significant rise in the consumption of processed and ultra-processed foods, including sugary beverages and this has been linked with a corresponding increase in non-communicable (NCD) disease risk such as obesity and Type II Diabetes (hereafter, diabetes). As a result, clustering of HIV and other NCDs such as diabetes and hypertension is becoming common, especially in low income settings. In response to the dual burden of disease, the National Department of Health (NDoH) has implemented the integrated chronic disease management (ICDM) aimed at strengthening primary health care (PHC) facilities to manage chronic conditions. However, chronic care is still fragmented in public health facilities with the HIV programme being ‘siloed’ within the health system. There is limited literature examining the experience of comorbid patients accessing care, or of the providers in responding to the needs of patients with two or more chronic conditions. The aim of this thesis was to investigate health and healthcare challenges and opportunities among patients with comorbid diabetes and HIV as well as healthcare workers providing care for them at a tertiary hospital in Soweto, South Africa. The thesis endeavoured to address the following specific objectives: (1) To understand patients’ perceptions and experiences in care seeking for comorbid diabetes and HIV at a tertiary hospital in Soweto, and self-management at home; (2) To understand healthcare providers’ experience in administering care to patients with comorbid x diabetes and HIV at a tertiary hospital in Soweto, and to investigate their perceptions on integrated and patient-centred care; (3) To understand the factors that facilitate or impede patients’ ability to achieve good health and healthcare providers’ ability to provide good health care in Soweto. Study design: This research used ethnographic methods encompassing participant observations at the clinic and in patients’ homes, and multiple qualitative interviews with patients and healthcare providers at a tertiary hospital in Soweto. The first study (which answered objective 1) draws from participant observations at the diabetes/endocrine clinic and in patients’ homes, and in-depth life narrative interviews with fifteen patients (n=15), who were recruited from the diabetes/endocrine clinic using purposive sampling. The second and third studies (which answered objectives 2 & 3) used observations at the diabetes/endocrine clinic and medical outpatient department (MOPD), and qualitative interviews with healthcare providers. Thirty (n=30) healthcare providers were recruited using purposive sampling from the diabetes/endocrine clinic and the medical outpatient department (MOPD). In addition, the researcher wrote intensive field notes during observations at the clinics and in patient’s homes. Data management and analysis: Data collection and analysis were conducted concurrently. Data were analysed at two levels. Level 1: Analysing data from healthcare providers - In this phase, data analysis adopted both deductive and inductive approaches. The deductive codes were informed by literature and questions used in the interview guide while inductive codes emerged from the data. These codes were refined by the constant comparative method. Making comparisons facilitated challenging already grouped data with new categories and this helped in validity and precise interpretation of the data. These categories were then reviewed by other researchers involved in the study, and any identified xi discrepancies were solved at this level. The researcher then developed a codebook which she uploaded in QSR Nvivo 12 software where coding was done, and emerging codes were added throughout analysis. Key identified themes in relation to study objectives were used in reporting the findings. Level 2: Analysing data from patients: The researcher took an inductive approach to analysing data. Initially, the researcher categorised data (coding) from interviews and field notes, based on phrases or patterned meanings that related to the study aims. More categories were added as new ideas emerged from the data. She cross-checked these categories, compared with new data and refined to identify similarities and differences. After developing key categories, the researcher involved other researchers who took part in the study, who collaboratively reviewed the data for further analysis and classifications. Based on collaborative agreement on data analysis, the researcher came up with key emerging themes identified in this study. She summarised these themes and developed case stories which she used in reporting the findings. Findings: Objective 1: This study revealed that patients’ ability to manage their multiple chronic conditions could not be dissociated from intertwined factors related to social and economic life, access to health facilities, and other family challenges, and household members managing chronic conditions. First, poverty, lack of transport to hospital, food insecurity and living environment (which constrained physical activities) hindered proper self-management. Second, many interlocutors spent a great deal of time caring for others, while neglecting their own health. Third, patients received fragmented services for their chronic comorbidities. Ultimately, this study demonstrates that both physical and mental health are reinforced by social or contextual factors, which render individuals vulnerable to other bodily or affective conditions, which underscores the xii tenet of syndemic theory – that structural factors impede individuals lives within the home, community, and clinic, which influence how diseases emerge, cluster, and interact, which produces health outcomes worse than any one single factor might cause alone. Objective 2: Providers described how they conceptualised and practiced patient-centred care (PCC). Mostly, those who practiced PCC used the Sotho-Tswana idiom ‘Batho-pele’ principles, which means people come first. Others understood PCC to mean placing the patient at the centre of care; empathising with the patients or treating the patient as a person. Practice of PCC was hampered by both structural barriers within the realms of the health system (e.g. lack of equipment and guidelines for multimorbidity, staff shortages and fragmented care) and patient (e.g. language barrier, poverty, lack of transport to the hospital, and missed clinic appointments). These factors triggered provider frustrations, inabilities, and burnout and constrained their abilities to deliver PCC. Objective 3: This study found that challenges within the health system, including insufficient medical staff and medication within the PHC clinics necessitated patient referrals to a tertiary hospital. At a tertiary hospital, patients with diabetes were managed first at the MOPD before they were referred to a specialty clinic. Those with comorbidities attended different clinics at the tertiary hospital partly due to the structure of the tertiary hospital that offers specialised care. In addition, there was little to no collaboration amongst healthcare providers due to poor communication, non centralised patient information, staff shortage, and professional differences amongst providers at a tertiary hospital. As a result, some providers were not aware that patients had other comorbidities xiii beyond the immediate disease they were treating; patients experienced disjointed care and drug duplications. Conclusion: Implementation of the ICDM is underdeveloped in public facilities in Soweto. Patients with diabetes continue to be referred to the tertiary hospital in Soweto when they could easily be managed at PHC clinics. There is need to strengthen PHC clinics in Soweto to manage patients with diabetes, and other comorbidities. This will entail addressing health system challenges such as lack of medical supplies, staff shortages, and non-centralised patient information system in the public healthcare system. There is also a need to ensure appropriate guidelines for comorbidities or multimorbidity exist, are known and available. In addition, healthcare providers (especially at PHC clinics) must be trained to manage diabetes and other chronic conditions, offer integrated and patient-centred care, and utilise cultural humility and structural competence when engaging with patients who struggle financially or prioritise other cultural beliefs to improve patients’ routine medical care attendance and adherence to clinical recommendations for long term self-care. Integrated care must be designed in a way that takes stock of the social embeddedness of diseases, and therefore must be considered as a social practice (as opposed to a medical practice, which is how it is traditionally understood). I argue that integrated care must address both medical (in the clinic) and social (in the home/family) challenges and bring together opportunities for fostering good health in both domains. Thus, integrated care must involve families, households, and social or economic conditions that shape the course of illness.