A mixed methods exploration of patterns of healthcare utilization of urban women with non-communicable disease in South Africa

Non-communicable diseases (NCDs), such as hypertension and type-2 diabetes, are the leading causes of death globally, contributing to two-thirds of global mortality [1]. Around 80 percent of these deaths occur in low- and middle-income countries (LMICs). Although historically NCDs afflicted affluent populations, increases in NCD prevalence, morbidity, and mortality have been measured among lower income groups [2],[3]. This is largely due to increases in obesity that have corresponded with the increased availability and consumption of higher caloric diets, lower physical activity due to mechanization, and tobacco use [2],[3]. As these lifestyle trends move from the affluent to the middle class and working poor, increasing NCD incidence and prevalence confront inadequate healthcare services for these populations in many LMICs [4].

Evidence from South Africa suggests that increasing NCDs coexist with low healthcare utilization [5]. For example, the South Africa Health and Demographic Survey found affordability and availability of healthcare services prevented 39% and 31% of women, respectively, from accessing healthcare in 2003 [6]. Some of the healthcare access issues may result from a large burden of disease upon a healthcare system historically rendered inequitable and inefficient by a racially-fragmented public healthcare approach [7]. One of the greatest challenges for NCD care involves universal coverage of healthcare services, which integrate community-based preventive services with hospital-based curative care [8].

Despite the growing burden of NCDs in South Africa, very little is known about how people living in urban townships manage these illnesses and engage with biomedical healthcare systems. We found in a healthcare access survey conducted with late-adult women in Soweto that around 50% had been diagnosed with an NCD, from hypertension to diabetes and epilepsy. However, only one-third (33.3%) of these women had sought biomedical services for an illness episode in the past six months [9]. In our initial analysis, we could not attribute the low utilization of healthcare services either to problems with the availability or affordability of healthcare services, which was relatively high, nor the professed belief in traditional healers, since this appeared to be related primarily to problems not associated with NCDs or conditions understood as biomedical in nature. Rather, we explained these findings with reference to the fact that they indicate partial compliance with medical regimens in accordance with largely self-defined treatment plans [9],[10].

Whereas we have briefly described patterns of healthcare utilization in Soweto, the aim of the present article is to further explore the reasons for these findings by the consideration of additional data collected in the health access survey, in a supplementary qualitative sub-study, and with reference to Andersen and Newman’s framework of healthcare utilization.

Andersen and Newman’s framework views healthcare utilization as an individual behaviour which is influenced by societal determinants, both directly and through the healthcare system [11]. As applied to the current study, we are interested in exploring the factors facilitating or inhibiting formal healthcare utilization defined as the multiple use of formal healthcare services over a period of time for the treatment of NCDs. Andersen and Newman speculate that in this type of scenario, societal level determinants, consisting primarily of technology and norms, may prove decisive [11].

This study was conducted with the female caregivers (mothers) of the Birth to Twenty (Bt20) cohort, based in Soweto-Johannesburg, South Africa. The Bt20 cohort began in 1989/1990 as a longitudinal study of children’s health and wellbeing [12]. A total of 3 273 singleton children born between April and June 1990 and residing in Soweto-Johannesburg were enrolled in the study. [13],[14]. The Bt20 cohort is currently in its 24th year, and has completed 20 data collection waves. The study is in contact with 70% of the initial cohort [9].

Descriptions of the demographic and NCD characteristics of the sample are provided in Tables 1 and 2. Half (50.2%, n = 547) the survey participants reported having been previously diagnosed with one or more of the following NCDs (Table 1): heart attack or angina, stroke, high blood cholesterol, diabetes, emphysema, asthma, arthritis, osteoporosis, epilepsy, or cancer. High blood pressure was the most prevalent form of NCD, affecting 32.8% of the study participants, followed by arthritis, which affected 12.9% of the population and high blood cholesterol, which affected 8.8% of the population (Table 2). The average duration of any NCD was 8.5 years (Table 1), and older participants were more likely to report one or more NCDs than younger study participants (Table 3). We found no relationship between socio-economic status and being diagnosed with an NCD, but those who were unemployed were more likely to report a NCD than those who were employed (Table 3).

This study examines perceptions and behaviors for health-seeking and NCD-care in urban South Africa. Combining qualitative with quantitative data, we found that the relatively low levels of healthcare utilization amongst women with NCDs in Soweto is due in part to low rates of expectation for consistent and high-quality care and a potential mistrust of the medical system (as demonstrated in Rosaline and Shirley’s stories).

Although low utilization of healthcare services has been documented [6],[13], our quantitative data underscore the potential severity of low healthcare utilization in Soweto, as only one-third (33.2%) of women with NCDs reported utilizing formal healthcare services. This is alarming as it may indicate poor medical management of NCDs, which may not only exacerbate the condition but also lead to premature mortality.

The case studies suggest that mistrust of formal healthcare services is a potential reason for low healthcare utilization based on past negative experiences, as with Monica (who felt that clinics provided only pain killers rather than diagnosis and treatment) and Shirley (who described a frustrating encounter with bureaucracy at the clinic), or on uncertainty, as with Rosaline (who was apprehensive about the effect of pharmaceutical medication on the body). Across all interviews, themes emerged that indicated an ambivalent relationship between the healthcare user and formal healthcare systems, including pharmaceutical medication. In some cases this manifested in multiple modes of treatment for NCDs. Other studies in the African context suggest that negative experiences of public healthcare services are frequently due to the fact that they are overburdened, resulting in shortage of medication and long waiting times to access care [15].

In our analysis the possession of medical aid was the strongest individual-level factor influencing the use of formal healthcare services. This suggests that low levels of healthcare utilization may be explained in part by economic insecurity, a notion confirmed by our finding that the perceived affordability of formal healthcare services was significantly associated with healthcare utilization.

It is easy to see why the possession of medical aid would be positively related to healthcare utilization, but it is less easy to see why the perceived affordability of healthcare services should prove a factor, especially given the fact that basic healthcare services are free of charge in South Africa. It has been suggested elsewhere that cost-related barriers to healthcare utilization may be associated with costs of transport and medication and complex treatment patterns [5],[9]. Our quantitative findings underscore the importance of further exploring how economic insecurity functions as a barrier to healthcare seeking in the urban South African context.

The self-reported use of patient strategies was the strongest societal-level factor associated with healthcare utilization by women with NCDs. Respondents who reported utilizing formal healthcare services were more likely to admit to the use of patient strategies. We classify the use of patient strategies as a societal-level determinant of healthcare utilization with the understanding that the use of patient strategies functions as a norm of social interaction that indicates the development of tacit knowledge guiding interpersonal interactions in the healthcare setting. Werner and Malterud have found in their qualitative study that women with chronic illness have to “work” to ensure that they are perceived as credible patients [16]. But the fact that such behavior is related to increased healthcare utilization suggests that experience of accessing healthcare at public healthcare facilities, combined with resilience, accounts for continuing healthcare use.

Should the lack of trust of formal healthcare services be a key factor in explaining healthcare utilization patterns, then it would be a factor spanning societal and healthcare system factors. Elsewhere it has been suggested that race or ethnicity may contribute to increased mistrust of healthcare services [17], but in the South African context it has been found that poor experiences of public healthcare facilities related to the lack of prompt attention and communication may be of greater concern [18]. Our case studies reveal that many women depend upon alternative and complementary medicine and therapy to complement their ongoing interaction with formal healthcare services. This suggests that self-diagnosis and reliance on traditional medicine emerge as responses to mistrust which simultaneously allow for the exercise of control over the intake of biomedicine.

The quantitative findings indicate that few people trust traditional healers for NCD treatment: only one in ten people interviewed believed a traditional healer could heal their NCD. Those diseases that people believed were treatable by traditional healers, as opposed to doctors, were illnesses of the social, spiritual, and emotional world. At the same time, the general belief in the efficacy of traditional healers over that of formal healthcare workers was associated with a delay in accepting formal long term treatment for NCDs. Other studies in the South African context have shown that the use of traditional healers and other alternative therapies is generally associated with poor adherence to formal treatment regimens [19],[20]. Our findings suggest that the belief in the efficacy of traditional healers may delay the onset of treatment at a formal healthcare facility, but that once such contact is initiated, the enduring belief in traditional healers does not affect the ongoing utilization of formal healthcare services, suggesting that such experiences may modify the belief in traditional healers, confining their utility to a more social role.

The availability and affordability of healthcare services emerged as significant healthcare system factors influencing the utilization of healthcare services, although they did not emerge as significant factors in the multi-factorial model. Nor did these emerge as themes in our qualitative analysis. Our results therefore indicate that while initial gains made in improving healthcare access in Soweto have been significant, further work is needed particularly in enhancing the experience of the healthcare visit.

The cross-sectional study design did not allow us to investigate healthcare utilization trends over time in relation to independent variables, such as socio-economic status and education. Future studies should also include surveys of healthcare providers within different areas of Soweto, and should relate these findings with healthcare users’ beliefs and practices. There is a need to include role-players from government and community sectors in the research process, and to ensure that the findings of future research feed into healthcare strengthening programs. Nevertheless, this research underscores the need for more research in urban South Africa on people’s beliefs about and access to healthcare for NCDs.

Our study has highlighted the role played by poor experiences of formal healthcare services and low levels of trust in explaining low healthcare utilization in Soweto. Demand-side reforms, such as increasing the number of healthcare workers and medical supplies will certainly prove important in changing the general perception of healthcare services and increasing healthcare utilization. At the same time, our findings underscore the importance of previous healthcare experiences and community perceptions of healthcare in shaping individuals’ choice to utilize formal healthcare services. Low healthcare utilization in Soweto has as much to do with poor trust of formal healthcare services, based on past negative experiences, as it does with lack of information and misconceptions about NCDs.

Trust, understood as the relational commitment between individuals in social settings, is developed along with the development of the institutional frameworks for communication and decision-making as well as the personal characteristics of the individuals involved in the trusting relationship, such as competence, empathy, congeniality and fairness [21],[22]. As such, it proves the linking concept between demand-side and supply-side healthcare reforms required to improve the quality of the healthcare interaction, and consequently the utilization of healthcare services for the management of NCDs. Responding to the evident lack of trust in formal, particularly public healthcare systems in Soweto, and in South Africa, should be based on high trust management practices by healthcare service providers.

DLIG and SN contributed to the study conception and design. DLIG participated in data collection. DLIG and EM analyzed the data. DLIG drafted the manuscript. All authors read and approved of the manuscript.