Disclosure Deficit Experienced by People Living with HIV/AIDS in Alice and Its Environs in Eastern Cape Province, South Africa: Perceptions of Selected Stakeholders
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This article investigated the underpinnings of low HIV disclosure among people living with HIV/AIDS (PLWHA) in Alice town and its environs in South Africa.
This article adopted qualitative methodologies of interviews and focus groups involving 38 selected stakeholders to tap their insights and perceptions on the position of disclosure rate in Alice town and its environs.
The findings indicated that disclosure rate was confounded by state of immense stigma; state of conflict faced by the PLWHA from their kins and community; PLWHA fearing job victimization; and lack of adequate psychosocial support.
The article recommends that the disclosure process takes place amid an environment of equilibrium between the PLWHA's intrinsic and extrinsic motivation, as well as when environment promises adequate psychosocial support. Moreover, the role of the members of social service profession is critical in advocating and preparing PLWHA for disclosure, as well as putting a conducive environment to allow disclosure.
Criminalization of HIV
stigma and discrimination
BACKGROUND AND INTRODUCTION
With South Africa in 2017 recording 7.2 million of its people living with HIV/AIDS (PLWHA), 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. For example, in 2017, the country experienced 270,000 new infections and 110,000 deaths from AIDS-related illnesses. 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. This is against a backdrop of the country doing poorly economically.
Unequivocally, one of the utmost hurdles derailing the campaign is the low HIV/AIDS disclosure rate in South Africa. 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. 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. 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. 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. 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.
For an effective disclosure, one needs to be adequately prepared, whether socially, psychologically, and emotionally before engaging in the process of deciding to disclose. 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.
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. Ethnicity is also a crucial factor. A study by Obermeyer et al. 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.
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. These underlie the constitutional rights to privacy, human dignity, and the right to bodily and psychological integrity (Department of Labour, 2012).
The fact that South Africa is still battling with the escalation of new HIV/AIDS infections, spending billions and billions of the taxpayers' money in order to access the 17.2 million of its PLWHA with ARV drugs, and finance many of the health deficits associated with PLWHA has made the country desperate in terms of strengthening interventions that can promise a reversal of the prevailing scenario above. This has made processes such as the need for the PLWHA to disclose their HIV/AIDS status, a promising one to strengthen the HIV/AIDS campaign. However, the disclosure phenomenon appears to face an array of various deficits such as societal stigma to the PLWHA, creating a platform of conflict with close kins and friends, jeopardizing the opportunities of PLWHA employability, driving a state of apathy and life sorrows, and an environment bereft of adequate psychosocial support. These factors are believed to be deficits lying on the way to advance a winning war against HIV/AIDS in Alice town and its surroundings, hence making the area experience a low disclosure rate.
Study aim and objectives
This study aimed to bring to the fore the empirical insights, thoughts, perceptions, and attitudes of selected individuals from Alice town and its environs with regard to low disclosure rate by the PLWHA. Largely, the state of low HIV/AIDS disclosure is believed to be contributing in derailing the war against the disease. The outcome of such a study will bring to the attention of HIV/AIDS practitioners and government policymakers, the underpinnings of low HIV/AIDS disclosure rate and therefore set in place motion to overcome them.
The study took place in Alice town and its environs. Alice is one of the Eastern Cape's rural towns where disclosure of HIV/AIDS is believed to be low. The study took the form of community engagement in most parts of the year 2015 where the principal researcher, accompanied by two research assistants upon visiting different cadres of people, realized that the area faced a low disclosure rate. There was a belief that stigma was derailing the campaign against HIV/AIDS, making disclosure rate to move at a snails' pace.
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. 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. 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. 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. 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. 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.
Data analysis is usually the third leg of methodology, after the research design and methods of data collection, and entails a process of stringent arranging, rearranging, and organizing data that carries the same idea or insight into its own category to constitute a theme. This research study used content thematic analysis, which means that the content of the data that implied the same meaning was put together to form its own category or a theme, with coding assisting the efficacy of the exercise. The goal of the analysis is to subject the data into a meaning-making process so that the ultimate goal of a study can be realized.
Ethical and legal requirements
It is a legal requirement for a study to follow all the requisite ethical requirements. This is a sure and a litmus test of a succinctly and an ethically executed research project. The study, then, becomes a scientifically sound process, as well as both an aptly and an astutely administered study. In this study, the principal researcher and his assistants had secured letters from their Head of Department authorizing visitation to different communities through community engagements. The researchers also managed to secure informed consent from the participants to proceed with the research process, following their established sound rapport with the researched participants. This is because of their erstwhile contacts during many episodes of community engagement sessions they had held in the study domain. Moreover, the researcher and his assistants, using their skills as social workers, checked and ensured that the participants were not emotionally hurt and were ethically allowed to discontinue the process if they felt so.
Research domain and justification of choice
Alice town and its environs in the Eastern Cape Province were the seat of data collection, done in 2015. Administratively, Alice town has 42 villages that differ in size and population, with those near Alice town, tending to be more densely populated than those at the peripheral parts of Alice town. The researcher invoked the principle of diversity to consider choosing samples that were nearby as well as those that were far off the Alice town. However, convenience sampling technique motivated the selection of more samples that were nearby than those that were far. Cost was also a huge consideration. Apparently also, HIV/AIDS issues such as HIV/AIDS disclosure were well deciphered in the villages near the towns than those far off. Perhaps, this was because of immense ignorance and low literacy levels among the population in deeper rural areas. Further, this was informed by empirical feelers in South African research terrain that indicates higher disclosure rates in relatively urbanized settings than in the rural areas. The study was considered an important one for it allowed the marriage of community engagement sessions with research, a big scorecard as far as the university research business is concerned.
Demographic profile of the participants
This section discusses the demographic profile of the participants as shown in Table 1, while the themes are presented in Table 2. Although age was not computed, the principal researcher considered it important that most of the study participants were PLWHA, or seronegative individuals, who held membership with the support groups of PLWHA; youth who were apparently knowledgeable about HIV/AIDS such as students doing research in the domain of HIV/AIDS; and those working with the PLWHA or members of the organizations that were assisting the PLWHA such as Alice Hospice. However, other stakeholders who hold leadership positions such as the South African Police Services and knowledgeable about HIV/AIDS were considered to be data rich. Perhaps, another reason why age was not computed was because the principal researcher and his two research assistants considered it central to select only the samples which could easily give insights and perceptions about the environment of HIV/AIDS disclosure in Alice and its environs.
|Method of data collection||Organizational affiliation||Participants||Total|
|In-depth interviews||Victoria Hospital||0||1||1|
|In-depth interviews||University of Fort Hare Clinic||0||1||1|
|In-depth interviews||University of Fort Hare (student)||1||0||1|
|In-depth interview||SAPS (Alice Station)||2||0||2|
|Focus groups||Alice Hospice||1||7||8|
|Focus groups||PLWHA linked to Victoria Hospital||5||10||15|
|Focus groups||University of Fort Hare PLWHA Support Group||4||6||10|
|1||Stigma confounds HIV disclosure|
|2||Disclosure creates a platform of conflict|
|3||Disclosure jeopardizes job opportunity|
|4||Disclosure confounds inadequate psychosocial support|
Unequivocally, the study failed flat to achieve the desirable gender parity. Men (13) were almost half of the women participants. However, the principal researcher and his two assistants were largely grossly interested with the views of the PLWHA and members of the support groups who constituted a bigger sample, more than the views of other stakeholders. This is because they were the ones who were likely to hold first-hand experience of disclosure, whereas other stakeholders were considered for their knowledge and perceptions pertaining to disclosure. However, the fact of fewer men volunteering to be study participants is a notable characteristic of people in Alice town and its environs where women are overrepresented in many community development platforms. Men usually display immense apathy in many community development agendas.
Stigma confounds disclosure
The study participants expressed fear that disclosure opens the door for the societal members to stigmatize those who disclose. This could be an overwhelming exercise, especially if the person who opt to disclose fails to get adequate psychosocial support, as well as if he/she is not strong enough to overcome an avalanche of stigma and discrimination from the society. This is because HIV/AIDS, despite continued acceptance by the general society, is still not considered a normal disease, but a dreadful one that people fear to be associated with. The following statements attest to the finding:
“For me, disclosure is like going to prison where all kinds of stigma will be subjected to oneself. I would rather not disclose”
“People who have disclosed are having a rough time as nobody wants to associate with them. They do not want to waste their time even giving you a handshake”
“Disclosure is sometimes an illusion that things will be good, but most of the time, it opens a tide of close kins and even friends laughing and talking about you all the times.”
Irrefutably, societies are still in fear of disclosure, and the phenomenon requires a lot of motivation to consider it. Stigma still remains a huge deterrent to people gaining courage to disclose (Mavhunga, 2018).
Disclosure creates a platform of conflict
The study participants expressed fear that disclosing was like shooting oneself on the foot. This is because it opened an opportunity of enmity between oneself and his/her close kins in tandem with friends. Perhaps, the situation becomes grave when the phenomenon creates bad blood between a PLWHA and his/her spouse. The following sentiments support the finding:
“Disclosure is pernicious in that it opens a can of worms bringing enmity with those one would bank on for support”
“It is a pity that upon disclosure, even one's kins are running away from you. Where do you go to if that happens?”
“Yes some of us get supported by our relatives and a few friends, but immediately you disclose, they do not want to associate themselves with you. You are left to sink or float. It's an awful process.”
Apparently, the wave of unacceptance of disclosure is still strong, making those who are supposed to avail the mush desirable psychosocial support to the PLWHA also succumb to the spates of stigma that the society harbors (Nobuhle, 2017).
Disclosure jeopardizes one's job opportunity
The study participants echoed that most people, especially those working and some looking for jobs, fear that disclosure is likely to wreak havoc their chances of either getting employed or for those employed, the risk being sacked. This they said was happening despite the government policies to stop the practice. The following sentiments bear testimony to the finding above:
“I will not disclose as I fear I can lose my employment. The employers do not respect the HIV/AIDS policy and the court processes may be protracted to an extent that one may die even before the results are forthcoming”
“It is very dangerous if all the potential employers know the job applicant is living with the virus. They may think one will come to pass the virus to their other workers. It is a very dangerous thing to do. Stigma has dealt this country a pernicious blow.”
Incontrovertibly, the fact that stakeholders did not have confidence with the enactment of the HIV/AIDS policy that governs against stigma and discrimination while offering services such as employment indicates that disclosure may not be a desirable phenomenon, as the PLWHA may feel disclosing could be disastrous to their life events such as their job opportunities. This challenges the government structures to ensure heavy penalty to employers who may treat the PLWHA differently from those who may be seronegative, or those who may have not disclosed. This also implores upon the members of social service profession such as social workers to strengthen their advocacy interventions to the government to ensure compliance with the policy.
Disclosure confounds inadequate psychosocial support
The study participants expressed dissatisfaction with psychosocial support to prepare the PLWHA to disclose. They indicated that some PLWHA were hoodwinked to disclose by HIV/AIDS campaigners and some nurses who wanted to justify they were winning the battle against HIV/AIDS. Unfortunately such personnel would face an environment bereft of psychosocial support to afford them resilience to a wave of stigma, cruelty, and maltreatment directed to the PLWHA who disclose. This was utterly a painstaking experience that left such a PLWHA heartbroken, despondent, and in a state of apathy. The following sentiments bear testimony to the finding above:
“Disclosure requires ample preparation with those disclosing understanding the dangers ahead of the exercise. Some are hoodwinked to tell the world they are living with HIV/AIDS and are then abandoned on their own”
“Disclosure is not an easier process and those luring the PLWHA to disclose without adequate psychosocial support like counseling are dealing them a pernicious blow.”
Unequivocally, inadequate preparation of a PLWHA to disclose is not only unethical and immoral, but also sets such a PLWHA in a very dangerous situation that can even be fatal. This is because upon abandonment, a PLWHA may be confused, anxious, and restless and can even decide to take away his/her life. Proper preparation, therefore, is an important prerequisite to engage a PLWHA to disclose. Availability of adequate psychosocial support to facilitate or support those undertaking to disclose is central.
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. 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. 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. 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. 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). 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. Obermeyer et al. 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.
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. 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. 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). 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). 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. 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. This finding is also supported by Obermeyer et al. 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.
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. established that urban communities with relatively modest socioeconomic status achieved more disclosure rate than those in rural areas with Meagre resources. 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. 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.
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.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
The researchers thank all the participants who participated in interviews and focus group discussions.
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