Disclosure Deficit Experienced by People Living with HIV/AIDS in Alice and Its Environs in Eastern Cape Province, South Africa: Perceptions of Selected Stakeholders

BACKGROUND AND INTRODUCTION

With South Africa in 2017 recording 7.2 million of its people living with HIV/AIDS (PLWHA),[1] and with a prevalence of 18.9 among the general population, although differing with regions, the country is refuge to the highest number of people living with HIV in the world. Moreover, it is a refuge to a third of all new infections in the South African region.[2] For example, in 2017, the country experienced 270,000 new infections and 110,000 deaths from AIDS-related illnesses.[1] This has had pernicious repercussions in that the country runs the most expensive antiretroviral (ARV) program that takes away billions and billions of the country's taxpayers. For example, the country in 2015 invested $1.34 billion to run the ARV programs.[2] This is against a backdrop of the country doing poorly economically.[3]

Unequivocally, one of the utmost hurdles derailing the campaign is the low HIV/AIDS disclosure rate in South Africa.[4] Conceptually, disclosure is the process of revealing a person's HIV status, whether positive or negative. Usually, HIV status is disclosed voluntarily by the index person, but it can also be revealed by other third parties.[5] Moreover, low disclosure rate in South Africa may be contributed by the bitter history that saw, in 1998, one of the individuals living with HIV/AIDS killed cold-bloodedly by her community after disclosing. That notwithstanding, disclosure remains one of the pivotal tools to expedite the HIV/AIDS campaign.[6] This is because it is considered a way to “open up” the HIV epidemic and therefore sets in a wave of ending stigma and discrimination against PLWHA.[5] It is critical that practitioners such as social workers are availed in many public settings to help people come to terms with the reality of disclosure, or equip them with courage, attitudes, and tools to make them resilient to the spinoffs associated with disclosure.[7] Further, disclosure becomes a tool of strengthening the campaign as people tend to highly believe the messages about living with the virus from those who openly display their seropositivity.[8]

For an effective disclosure, one needs to be adequately prepared, whether socially, psychologically, and emotionally before engaging in the process of deciding to disclose.[7] Perhaps, this implies that an individual's HIV status deserves protection against indiscriminate disclosure due to the nature and negative social context the disease has, as well as the potential intolerance and discrimination that result from its disclosure.[4]

Perhaps, it is also good to consider other external factors that affect disclosure, such as gender, residence, and ethnicity. In patriarchal societies such as South Africa, women may not easily disclose without the consent of their partners. Sometimes, disclosure can lead women to be abandoned or even be subjected to severe spates of gender-based violence.[9] Ethnicity is also a crucial factor. A study by Obermeyer et al.[5] observed that in the United Kingdom, African men are less likely to tell their partners about their HIV/AIDS infections and are also less likely to disclose their HIV status to their relatives, partners, and work colleagues compared to White men.[5]

Ethically and legally, disclosure should be consensual and should not be done under any duress. It is ethically wrong if one is held at ransom to disclose because he/she would lose an opportunity like a job if he/she does not disclose. This presents an ethical dimension that is outlawed in the South African Employment Equity Act number 55 of 1998 in tandem with the Health Professions Council of South Africa's ethical rules and ethical guidelines of South African Medical Association.[10] These underlie the constitutional rights to privacy, human dignity, and the right to bodily and psychological integrity (Department of Labour, 2012).[10]

METHODS AND STUDY SETTINGS

The methodology tries to answer how the research study was undertaken, that is, all the steps from the study conceptualization to analysis.[12] It is usually a three-tier process involving elaborating the research design which is usually the architectural layout of the study; methods of data collection; and, thirdly, data analysis.[13] In the design of the study, it used an interpretative paradigm that entails investigating and seeking the samples' qualitative interaction with the phenomenon being investigated; in this case, HIV/AIDS disclosure rate. A case study as a specific research design was also utilized, meaning that only a few samples were investigated and data were analyzed for their insights and perceptions on the environment pertaining to HIV/AIDS disclosure.[14] The study was also qualitative in nature where people's deeper attitudes and insights formed the bedrock of the study findings.

In the methods of data collection, the study used nonprobability method, but specifically purposive sampling. This means that the samples were chosen based on the researcher's intuition of their capability to generate the desired results. The samples, therefore, were those that potentially promised to be data rich in terms of generating insights and nuances pertaining to HIV disclosure.[13] Moreover, the data collection process was cross sectional, meaning that it was collected within a little spell of time. This is usually motivated by time constraints and a motivation to cut out on the study costs. The samples were, therefore, subjected to both in-depth interviews and focus group discussions, and their responses were tapped to ensure that all the nuances pertaining to HIV/AIDS disclosure were captured expeditiously.[15] In addition, to ensure thoroughness and precision of the participants' responses, data were collected in Isi-Xhosa language. This did not present significant challenge because two of the research assistants were of the Isi-Xhosa subtribe. The data collection process also respected the principle of saturation where the researcher and his team would stop further investigation with subsequent samples when the responses given were deemed to be the same. Importantly, also, the data collection process took into consideration the participants' gestural cues that are important in enriching the qualitative data. This was easily sorted out because the principal researcher and one of his two assistants were all social workers and were well versed with the skills to recognize the in-depth meaning of any gesture.[1617]

RESULTS

DISCUSSIONS

The study participants bemoaned that disclosing was like opening the floodgates of all kinds of stigma to be subjected to the PLWHA who has decided to disclose. Ironically and paradoxically, it needs to be processed that disclosure is considered a way to “open up the HIV epidemic;” hence, it is a pivotal step toward ending stigma and discrimination against HIV/AIDS.[45] This means that it should poignantly and robustly be encouraged. However, the situation on the ground seems to suggest a cyclical relationship between stigma and HIV, with people who experience stigma and discrimination being marginalized and made more vulnerable to HIV. On the other flip side of the coin, those living with HIV are more vulnerable to experiencing stigma and discrimination. This perhaps indicates that as long as stigma is not significantly tackled, the PLWHA will always find it difficult to disclose.[18] Moreover, disclosure displays a reciprocal relationship with states of stigma, where lowered state of stigma encourages disclosure, whereas higher rates of stigma confound and stifle disclosure rate. This is critical because the issues of stigma, discrimination, and denial have been poorly understood in many countries and are often marginalized within national and international programs and responses.[19] One cannot perhaps fail to question the efficacy and effectiveness of the South African policy on stigma and discrimination in tandem with wishing to evaluate the awareness of such a policy. This is because many PLWHA despite the presence of this policy are usually discriminated, making disclosure a difficult terrain to engage in. Cases of employers failing to employ people on the grounds of living with HIV virus have not been uncommon.[4] It would then be crucial that social service providers such as social workers widen the horizons of their advocacy for the government to ensure robust and effective application and implementation of the policy. It is apparent that the policy is poorly conceptualized and processed in most of the rural areas like in the study domain.

The findings revealed that disclosure was causing bad blood between the person who discloses and his/her family members as well as friends. This is succinctly clear in South Africa where in the journey of HIV/AIDS since its discovery, conflicts and violence have largely accompanied the phenomenon, with the community of Kwazulu Natal killing Gugu Dlamini in 1998, (Mavhunga, 2018).[820] However, perhaps, the phenomenon of disclosure conflict takes another dimension if the status is disclosed by a third party, like someone's lawyer or a medical practitioner who should hold his/her clients' status confidential.[4] Obermeyer et al.[5] further reinforce the need for the laws and policies to be strengthened particularly with regard to how best to facilitate disclosure while protecting medical confidentiality. The researchers above further contend that when PLWHA hold strong confidence that the laws will take their toll against possible discrimination, they are likely to easily engage in the journey of disclosure.[5]

Paradoxically, the phenomenon of disclosure presents a dilemma whether laws and guidelines should allow mandatory disclosure to one's spouse or partner; or whether the caregivers, especially of PLWHA, should have the right to know the status of their clients living with HIV/AIDS. While recognizing the human rights of the PLWHA, other laws such as criminalization of the virus need to be considered.[45] The researcher also thinks that the rights of the spouse to know the status of his/her partner go beyond the human rights. One may be socially and culturally correct to demand to know the status of his/her partner. This is because in the event one is blind about his/her partner's status, one may also be at risk of contagion. The same applies to the caregiver who may be at risk of contagion when he/she does not know the status of his/her client.[21] Unequivocally, this scenario above presents hurdles to a desirable and a successful disclosure campaign. This again positions the role of social service providers such as social workers in the quest to advocate for such debates to be made alive in many forums responsible for the HIV/AIDS campaigns.

The findings indicated that disclosure may undermine one's position to get a job or even face the challenge of being sacked. While people who disclose living with HIV/AIDS face an array of discrimination and stigmatization, it is good to note that the laws of the country protect such people against such kind of harassment. Specifically, the code of good practice on the key aspects of HIV/AIDS and employment unequivocally states that no employer may require an employee or an applicant for employment to undertake an HIV test in order to ascertain the employee's HIV status (Department of Labour, 2012).[10] However, there are contradictions and irony in that, still, employers can approach the Labour Court in terms of Sections 7 and 50 (4) of the Act to obtain authorization for such testing. This can be granted if such testing is justifiable in light of medical facts, employment conditions, social policy, fair distribution of employee benefits, or the inherent requirements of a particular job (Department of Labour, 2012).[10] Moreover, these provisions do not prohibit cases of permissible testing in the workplace where an employer has provided infrastructure to cover health-care service plan such as HIV testing, counseling, and treatment to employees. Moreover, other circumstances, such as the occurrence of occupational accidents that carry the risk of contagion, may warrant such testing without the consent of the employee concerned. It may also be effectuated for applying compensation following such an occupational phenomenon.

The study findings perceived that there was poor support to warrant the PLWHA to disclose. This was unequivocally contributing to a low disclosure rate in the study region. This, they indicated, was because of weaker health-care providers and a lack of requisite psychosocial support. This scenario finds parallel with the work of Aderomilehin et al.[22] who candidly contended that inadequate capacities of the health-care providers due to a lack of effective training largely confound the rate of HIV/AIDS disclosure.[22] This finding is also supported by Obermeyer et al.[5] who contended that for disclosure to increase, the service providers must be strong including making more services available to the PLWHA. This poignantly points to the need to avail various kinds of humanistic psychosocial support such as counseling that will robustly strengthen the HIV/AIDS disclosure rate.[23]

Incontrovertibly, some studies have established that the socioeconomic factors play a crucial role in determining the disclosure rate. In South Africa, for example, Norman et al.[24] established that urban communities with relatively modest socioeconomic status achieved more disclosure rate than those in rural areas with Meagre resources.[24] In urban settings, these communities had more support from the nongovernmental organizations and other individualized support. The scenario is also supported by other studies among the Nigerian migrants living in Sweden which established that more educated individuals due to their apparently higher socioeconomic standing disclose easily than those with less education.[2526] It is then poignantly clear that if the research domain is to increase its HIV disclosure rate, more psychosocial support from the service providers need to be availed.

CONCLUSIONS

Importantly, the machinery of HIV/AIDS needs to make adjustments that will see the level of HIV disclosure rise. This is critical because of the cyclical relationship between one's seropositivity and disclosure and also a realization that an environment of adequate prerequisite resources to the PLWHA lures or motivates their disclosure rate. Moreover, caution needs to be placed against rushing the PLWHA to disclose in an environment bereft of prerequisite psychosocial support, as well as ample preparations. Disclosure should only take place when one's intrinsic and extrinsic motivation strikes an equilibrium. Importantly, also, members of social service profession need to be at the forefront in capacitating the PLWHA with motivation and encouragement to disclose after considering the adequacy of psychosocial support such as counseling packages.