Background
“Everyone has the right to have access to health care services (…) and social security, including, if they are unable to support themselves and their dependants, appropriate social assistance.” (Section 27 of the Bill of Rights, South Africa) [
1]
In South Africa (SA), HIV/AIDS remains a major public health problem. In 2010, approximately 5.5 million were infected with HIV, making it globally the country with the largest number of people living with the disease [
2]. In a context of chronic unemployment and deepening poverty, two important government initiatives have the potential to ameliorate the additional socio-economic burden and costs of healthcare arising from HIV/AIDS for affected individuals. First, the provision of free primary health care has improved access to healthcare. In tackling the HIV epidemic, approximately 1.4 million people or three quarters of the eligible adults received free antiretroviral treatment (ART) by 2012 [
2], making it the largest public ART programme in the world. Second, the existing social security system has been significantly expanded to reach a larger part of the population, specifically aimed at redressing past inequities arising from the apartheid system [
3]. Here, the constitutional right to social security is of great relevance, with social security being “an important safety net that helps relieve poverty and protects people against economic shocks” [
4]. Social assistance is also extended to adults with HIV/AIDS who are unable to work because of a mental or physical disability
1 and are deemed eligible to receive a Disability Grant (DG).
2 Approximately 16.0 million social grant payments were made to vulnerable people in January 2013, of which approximately 1.2 million were paid out as DGs [
5].
Eligibility to the DG is defined by the South African Social Security Agency’s (SASSA’s) guidelines [
6]. Criteria for qualification include applicant’s status (i.e., citizen, permanent resident or refugee); being of working age (18 years and older); passing a means test and having received a medical assessment report. The disability is assessed and confirmed by a medical assessor, who is a state appointed doctor. The DG can be either permanent (for disabilities lasting longer than 12 months) or temporary (for disabilities between six and 12 months) and HIV patients are eligible for the temporary DG.
3 The DG is re-assessed and the person is re-examined by a doctor every six-months to confirm whether they still qualify. Hence, ART patients lose their DG as soon as their health begins to improve.
4
It has been argued that eligibility to the DG and in particular the relative vagueness of definitions of ‘people with disability’ for people with HIV/AIDS has provided a gap for subjective interpretations for both applicants and the healthcare providers including doctors appointed as medical assessors [
7,
8]. Although there are some key principles that should guide disability assessments, previous research indicates that the medical assessment report which is necessary to confirm disability is complex, particularly in relation to eligibility for the temporary and permanent DG [
9‐
12]. Moreover, the on-going challenge of human resource capacity in the public health care sector, particularly the shortage of doctors, means that few staff are available to assess disability in public facilities, leaving very little time (as little as 3 min) to assess a patient’s disability [
8].
McIntyre et al. [
13] present a conceptual framework in which access to care is represented by the degree of fit between the characteristics and contexts of individuals with health care needs and the way the service is provided. The framework identifies three separate dimensions of access; affordability (do the individuals have the capacity to incur the full costs of receiving care?), availability (is the appropriate care supplied?) and acceptability (is care supplied in a way that meets the reasonable expectations of patients?). Both Cleary et al. [
14] and Fried et al. [
15] argue that although ART treatment is provided free of cost at facilities in the public sector, some patients are still facing financial challenges in accessing care.
Building on the findings of Cleary et al. [
14] and informed by the access-framework of McIntyre et al. [
13], this paper assesses predictors of access to the DG and how receiving a DG improves affordability to transport and food which may in turn impact on other access barriers such as availability and acceptability of services. We aim to investigate the interaction between access to the DG and access to care for HIV/AIDS. More specifically, we are guided by the following two research questions. Are there any inequalities in access to the DG for patients on ART? What are the implications of DG access for on-going access to healthcare? In relation to the access-framework, variations in ability to meet the shadow price of health care (i.e., the non-treatments costs associated with access to care) are expected to be associated with variations in service utilisation. DGs are considered a means of empowering those with limited means to meet the costs of accessing care.
We use data from patient-exit interviews across two urban and two rural sites in SA to investigate presence of inequalities in access to the DG. We were interested in the socio-economic, physical location and treatment characteristics of DG recipients (compared to non-grant recipients). Relevant is also the healthcare delivery system in which the patients’ access to care has an influence on DG uptake; some facilities may be structured to promote, encourage and provide support and information to patients regarding their social rights including application for DGs. In addition, some sites are more urban than others and the composition of socio-economic backgrounds of patients is likely to vary by site.
We explore underlying factors which either facilitate or inhibit access to the DG and how these differences in access play out in terms of healthcare access through patients’ narratives (both grant and non-grant recipients) and healthcare providers’ narratives. Uptake of the DG might be determined by patients’ knowledge and perceptions about the existence, eligibility conditions and the DG application process. Previous research indicates that access to information and knowledge about where to access care or services empowers an individual [
13,
15‐
17]. We also consider healthcare providers’ knowledge about DGs and their ability to assist patients in accessing DGs and the implications for the acceptability of care.
Discussion
This paper focuses on factors that explain variations in access to the DG, the administrative challenges patients experience in obtaining the grant and finally the role of the grant in improving treatment access and sustaining livelihoods of rural and urban ART patients in SA.
With regard to the first research question (i.e., are there inequalities in access to the DG for patients on ART?), the findings do not indicate systematic discrimination between patients based on socio-economic status or other demographic variables (i.e., age or sex). However, the quantitative analyses point to low overall coverage across the four sites which raises questions of whether there is a problem of targeting and uptake. According to the SASSA guidelines for 2007–08,
5 households with annual income of less than R58,224 (or R4,852 per month) were eligible for the DG. In the sampled households, almost all households would be eligible for the DG, given an average household expenditure
6 of approximately R972.00 per month. At the same time, while household income is a necessary criterion for the DG, the main criteria is proof of disability, which requires assessment by a clinician appointed for this task.
Importantly, employment was a significant predictor of access to the DG. Therefore, although the threshold level of income above which an individual did not qualify for the DG was relatively high, the probability of a patient failing to satisfy the means test was expected to be higher among employed patients than non-employed patients. In other words, the probability of employed patients receiving the DG was significantly lower than for unemployed patients. This might also suggest that the employed found it more difficult to attend the various stages of the assessment process because of difficulties in arranging time off work. Alternatively, it might suggest either appropriate targeting where employment is being used as an informal assessment either of means or of disability. With respect to the latter, estimating or verifying a patient’s means may be difficult and time consuming and so alternative ‘markers’ or proxies (e.g., employment status) may be used by assessors in order to expedite the process (irrespective of the actual per capita income of the household). However, whether this was a practice in all or any of the sites cannot be verified and established from our analysis. But it does imply that more attention needs to be given to the assessment process.
There are observed inequalities in access across sites, with higher levels of DG coverage in rural sites. Patients in the two urban sites are significantly less likely to receive a grant than patients in Bushbuckridge. A possible explanation might be that rural patients are more likely to be unemployed and poorer and therefore more likely to qualify for grants than those in urban sites. It is also possible that socio-cultural (e.g., stigma) factors could play a part in contributing to these observed differences between the rural and urban sites. Furthermore, in each sub-district setting, we would expect different implementation practices given the discretion that implementing actors have regarding service design, including location, opening hours and referral mechanisms, as well as the local practices of the doctors that have been appointed as medical assessors. Finally, our provider interviews indicate that at the facility level, there are differences in the ways in which specific ART providers communicate with patients about the grant, and the extent to which they might go the extra mile to facilitate access for their patients (see also Elloker et al. [
21]).
The interviews with providers and patients point to the complexity of the DG as a challenge for access. As Black Sash, an advocacy group has argued “…there has been no agreed definition of disability or consistent application of a standardised tool to assess disability. This has subjected many of our clients to the discretion of medical practitioners and officials, which contradicts the basic principles of administrative justice.” ([
22], p3).
Complexity of the grants process and eligibility contributed to delays in access to the grant. As Knight et al. ([
12], p143-144) found in their qualitative study of households in rural KwaZulu-Natal “… the relative timing of receipt of the disability grant and beginning ART is important. In contrast to those on ART who received the grant in good time, those who received it late recovered health more slowly… suggest [ing] that a synergistic relationship may exist between timeous receipt of this grant and improved health outcomes on ART.”
The imperfect communication and implementation practices around the DG and the subsequent misunderstandings of its processing have impacted relationships and communication between patients and healthcare providers. This contributed to suspicion and mistrust over the motives of the other. Providers spoke of patients attempting to defraud the system. The perception of providers needs to be examined against the fact that ART patients often show a reduction in symptoms and ‘disability’. Healthcare providers argued that patients, who are dependent on the DG, tried to avoid a situation where they were no longer considered disabled once their health improved. In the absence of employment opportunities or alternative social assistance mechanisms, this, as Simchowitz ([
23], p12) points out, can create a potentially “vicious cycle of sickness and health,” where discontinuation of the DG might contribute to the health of patients deteriorating substantially enough to again qualify for a DG. Similarly, Natrass ([
24], p14) speaks of “perverse incentives”, where patients are left to choose between treatment and health or stronger economic security for themselves and their family. On the other hand, patients speak of being ‘denied’ the grant and of fraudulent and discriminatory practices on the part of the providers. A recent study exploring the perceptions and experiences regarding the DG for persons on ART in South Africa concluded that “Participants valued their health more than the income, however, and, despite the risk of losing the grant, remained adherent to ART” [
25]
Importantly, patients might view healthcare providers as fulfilling a role which extends to being gatekeepers of information and either facilitators or barriers to accessing the DG. One might further expect that the nature of the patient-provider relationship around the DG has implications for and spills over onto the ART relationship. As previous research has shown, the social relationship between patients and providers is crucial for treatment adherence and success [
26]. Further, Noyes and Popay ([
27], p238) argue “misunderstanding and miscommunication between healthcare professionals and services users appear to be commonplace.”
This paper provides additional evidence of the role of the DG in sustaining the livelihoods of often impoverished ART patients and also enabling treatment access. This is consistent with the finding that household expenditure was similar for both grant-recipients and non-recipients, suggesting that grant recipients could afford higher expenditure levels owing to the grant. Therefore, one might presume that the grant ‘fills the gap’ and enables those who receive it to achieve the same levels of household expenditure as the non-recipients. These findings are consistent with the findings of previous research on the role of the DG in the context of HIV/AIDS [
28]. Conversely, withdrawal of the DG, once the health status of the grantee improved impacted adversely on the lives of patients and their ability to adhere to treatment (ibid). Even with access to the DG, patients might employ a variety of other factors to cope with health care costs, including borrowing money, selling assets and receiving support from family. Fried et al. [
15] use ART patients’ narratives to highlight the challenges of accessing ART over a long period of time and emphasise the importance of social support networks. A related paper [
14] provides futher details of these alternative support methods, and contrasts the experience of ART patients to the experiences of individuals using TB and maternity services.
In recent years, there have been increased calls for the introduction of a Chronic Illness Grant [
8,
12,
22,
29,
30]. As argued by Black Sash ([
22], p4), “…we do not think it is appropriate for people who have chronic illnesses to necessarily be defined as disabled, as it both misrepresents these people’s potential for health and works perversely against health-affirming behaviours.” The Chronic Illness Grant would serve to provide life-long income support for those with chronic illness including HIV/AIDs and unlike the DG would not be discontinued once the patient’s health has improved and the disability has gone. It would also not prejudice those patients who are employed.
This study has several limitations. Firstly, we did not have data on patients’ disability. This information would have allowed us to be able to comment further on patients’ eligibility for the DG. Secondly, at the time of our study, we did not interview a state-appointed doctor who assesses patients’ eligibility for the DG. This, given substantial variations in policy implementation between different provinces, would have called for a substantial expansion of our data collection strategy. Thirdly, the rural site Hlabisa was excluded from the qualitative component of the research. Therefore, we are unable to identify reasons why patients in Hlabisa had better access to the DG than those in the other sites. Fourthly, the cross-sectional design of the quantitative component does not allow us to comment on the relationship between access to the DG and treatment adherence. More specifically, we cannot provide evidence based on the quantitative analysis that DG recipients are more likely to be adherent (i.e., successful use) than non-recipients. The patients’ exit interviews do not really explain or illuminate successful use very clearly since few people reported low adherence or missing visits. Further, non-adherent patients were less likely to be captured in the study, which is a research design issue. Finally, for the qualitative component, recruitment and follow-up of patients was challenging. In some instances, although appointments were arranged and interviewees were reminded about the date of the interview, they did not meet the appointment. Often cited reasons included conflict between appointment and household or work responsibilities and lack of transport money to the clinic. Also, tracing patients was complicated by the fact that many of them did not have a permanent address, or had provided an incorrect address or were not contactable by telephone.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
SB, SC, JF and VG conceived the analysis. VG and JF implemented the qualitative analysis and SC the quantitative analysis. NC undertook a review of the literature. VG wrote the paper with assistance from JF and NC. All authors critically reviewed the manuscript, read and approved the final manuscript.