Results
Forty-two (42) peer-reviewed qualitative and mixed-method papers published between 2001 and 2012 from thirteen (13) SSA countries were included in the synthesis (see Table 1). Thirty (30) were exclusively qualitative studies and twelve (12) were mixed-methods papers. While SSA is not a heterogeneous setting, some common characteristics could be deciphered: generalised HIV epidemic (HIV prevalence of more than 1% in the general population), and predominantly low-income countries with generally weak health systems and where HIV is mostly heterosexually transmitted. Twenty-three (23) second-order constructs were generated and summarised into eight (8) third-order constructs (Table 2). The findings are derived from second-order constructs and are categorised into enabling and deterring factors.
Enabling Factors for HIV Testing
Poor Health or Death of Sexual Partner or Child Physical deterioration of health and poor health/death of sexual partner or child elevated the perceived risk of infection and a decision to test:
"My husband passed away two years ago, he had TB [tuberculosis]. I also looked after my daughter who was sick for a long time before she passed away and so my mind was not settled as I was suspecting that I could have acquired the deadly virus. When I heard that VCT was taking place today, I decided to put my mind at rest by being tested." (Female Tester, Zimbabwe).
Experience of a sexually transmitted infection sometimes heightened risk perception as did personal contact with or knowing someone who had died of AIDS, thus increasing the willingness to test. Experiences of multiple sexual partners and perceived partner unfaithfulness also created as sense of vulnerability and therefore encouraged uptake of HIV testing.
While heightened risk of HIV infection triggered uptake of HIV testing, sometimes it dissuaded people from testing as some assumed that they were already infected.
Availability of Life-prolonging Antiretroviral Therapy While HIV was previously perceived as a 'death sentence', the increasingly wider availability of life-saving medication in many countries of SSA has shifted this notion. In some countries of SSA, this was found to be an incentive to test. Therefore, testing and knowing one's HIV status was no longer associated with death, but as a path to start treatment and prolong one's life. For pregnant women, and despite the reported existence of gender inequality in health seeking decision making, testing was often undertaken as maternal obligation to protect the unborn child from HIV infection.
"I tested the time I was pregnant. I wanted to know if I was negative or positive, and I didn't want to put my baby at risk…" (Woman respondent, South Africa).
HIV Testing as Preparation for Marriage In other instances, HIV testing was undertaken as an essential part of preparation for marriage. For instance, a study in Ghana encapsulates the role that the church was playing in increasing the uptake of HIV testing as an integral part of marriage preparation and counselling. As part of marital rituals, the church required prospective couples to seek HIV testing before the church could sanction such marriages. Explaining how this 'mandatory' strategy came about, one study participant noted that:
"We had an HIV/AIDS awareness programme in our church…After an expert delivered a lecture, we were shocked at the numbers… we decided all those who are planning to marry must be tested for HIV/AIDS… We wanted to protect our future generations…" (Respondent, Ghana).
Organisation and Delivery of HIV Testing
The roll-out of diverse HIV testing initiatives has contributed towards uptake of HIV testing. The implementation of 'opt-out' provider-initiated HIV testing - HIV testing and counselling which is recommended by health care providers to persons seeking health care services as a standard component of medical care - has contributed to increased uptake of HIV testing. For instance, service users reported being tested at antenatal care, or as TB patients as an integral part of health care. This strategy was sometimes regarded as non-voluntary. Individuals sometimes acquiesced to the pressure by service providers to test:
"Although they say its voluntary, but they put pressure on you to test for it….If you don't want to do it then, they must say 'Okay, tell us when you feel comfortable for an HIV test."' (23-year old female tester, South Africa).
Similarly, bringing testing services closer to the people through outreach mobile HIV testing attenuated (opportunity) costs of travelling and waiting times, and provision of free testing services in Kenya, and expectations/provision of material benefits (i.e. food relief) encouraged uptake of HIV testing. The use of non-familiar counsellors through mobile VCT was viewed as enhancing confidentiality, thus improving uptake of HIV testing.
Social Network Influence and Support Decision making about HIV testing were inextricably linked to social network influence. A study in Zambia poignantly describes how individuals sought the views and support of their peers and family members during the decision making process about seeking HIV testing. In part, this was because friends and family members were crucial sources of psychosocial support and for family members a critical source of economic support:
"In the first place I never wanted to go there [for an HIV test], but I consulted my sister. She said no and I also said no. But afterwards I asked my brother who said . . . you should go for VCT, so that is when I went." (Male tester, Zambia).
Deterrents to HIV Testing
Perceived Low Risk of Infection One recurring theme was that across SSA, individuals self-assessed their risk of infection. Lay interpretations of being at low risk of infection, sometimes because of abstaining from sex or lacking a sexual partner negatively affected uptake of HIV testing. Proxy testing - adopting the status of sexual partner - was sometimes used as a risk estimate and a representation of one's own HIV status. Some people felt they were at low risk of infection because they trusted their partner or because HIV was mainly perceived as a problem for sex workers. A lack of physical symptoms or deterioration of health was also perceived as a sign of not being infected. In low prevalence settings like Mali, not knowing someone with HIV or who had died of AIDS created a perception of being at low risk of infection, thus undermining uptake of HIV testing.
Stigma, Social Exclusion and Gendered Relationships Fear of stigma was another dominant theme for the low uptake of HIV testing in many settings of SSA. Particularly because HIV transmission is predominantly heterosexual across SSA, being seen at a testing centre was synonymous with sexual promiscuity and assumed HIV-positive status. For TB patients in South Africa, Ethiopia and Cameroon, the prospects of dealing with potential 'double' TB/HIV stigma acted as disincentive to test. The fear of HIV-related stigma is reflected in the following:
'Even if I am already infected, nobody knows and it causes me no problems, at least for now. Imagine I go and do the testing and I find out I am positive, for how long will I hide it? Once people get to know I will be finished. My family will shun me. My friends will desert me. I will not be able to get a decent job. That is dying even before the infection kills me.' (25-year old female non-tester, Nigeria).
A study in Tanzania found that while the effect of ART on improving corporeal health had motivated uptake of HIV testing, a new form of stigma had emerged in which individuals on ART were stigmatised as they were viewed as being responsible for the continued spread of HIV on account of them living longer with HIV. This in turn undermined uptake of HIV testing.
Across the sub-regions of SSA, fear of social exclusion also negatively influenced uptake of HIV testing. The fear of losing social support and sexual partners, and the fear of straining marital relationships, including possibilities of abandonment, divorce, or even violence inhibited uptake of HIV testing. The desire to marry also weighed heavily on people's mind and a positive sero-status was viewed as threatening the chances of finding a marriage partner. In Uganda, there was fear that where discordance arose, test results could be used as confirmation of infidelity which could strain marital relationships.
Within marital relationships, gender inequality affected women's uptake of HIV testing. Studies in South Africa, Uganda and Tanzania found that men enjoyed decision-making autonomy on HIV testing. Most studies reported women lacking control over their health; decisions about seeking HIV testing had to be discussed with, and permission obtained from, spouses. In Tanzania and Zimbabwe, obtaining consent still raised suspicions of possible infidelity and those found HIV positive risked being blamed for contracting HIV. Thus HIV testing was shunned to avoid straining marital relationships. In Malawi, Uganda and Zimbabwe, men refused to test since this was at odds with masculine identity of self-confidence, resilience and stoicism. In Zambia, one study found that if the wife suggested testing, this was viewed by men as undermining their role as decision makers.
Quality of HIV Testing Services Across sub-regional settings of SSA, individual perceptions of and experiences with the health care system undermined uptake of HIV testing. Perceived lack of confidentiality by health staff; perceived lack of confidence in the competence of health personnel; and perceived poor attitude of health staff dissuaded people from testing. Perceived unreliability of test results in Malawi and Uganda and distrust of HIV testing technologies in Uganda and Zambia discouraged uptake of HIV testing. Describing his concerns about confidentiality, one respondent in Malawi said:
"It's because if I can be tested at Mhojo Health Centre, VCT counsellors there know me and if that counselor at the VCT [centre] finds me with the virus then he can start spreading the messages to friends of mine, and if I know about that then it becomes very bad to my life, that's why to be tested with someone else whom you never know it's good" (Male, 48 years old, Malawi).
Similarly, at health facilities, perceived poor location of testing facilities undermined uptake of HIV testing. Secluded testing facilities or use of VCT-specific clinic cards created social visibility of seeking HIV testing and assumption of being sexually active and/or already being infected. Where couple counselling was conducted at antenatal clinics, men perceived the testing sites as feminised settings, and therefore out of bounds.
Trust in the Health Care System and Conspiratorial Beliefs Although not universally held across SSA, conspiratorial beliefs about HIV being a 'western plot' to dominate SSA were reported in Mali and Zambia. This inhibited uptake of HIV testing. These conspiracy views were nested within historical discourse about "colonial projects [which] turned African patients into objects to be studied and scrutinised, categorised and measured". In Mali, HIV was viewed as an invention to halt the growth of the African population or to sell western bio-medical products. Promotion of HIV testing by western countries as a gateway to accessing treatment and living a longer, healthy life was therefore viewed as a ploy to expand western countries' interests:
" In reality, AIDS is an invention to sell condoms. The West created the idea of AIDS to put a stop to sexual relations or even better it's a policy to put a brake on the growth of the African population."(23-year old male non-tester, Mali).
While HIV testing services were increasingly provided free of charge in many settings of SSA, this 'gift' by western countries and agencies or their local affiliates was viewed as attempts to further subjugate the weak African populations and to benefit western countries. As one old man in Zambia put it:
"Look around you, who is making money off of this disease? It is not Zambians. It is you [white Westerners]. This is why people are suspicious of this disease. This is why they think it [AIDS] was brought in from the outside." (Male respondent, Zambia).
Where religious discourse was dominant, a study in a rural setting of Zambia found that distrust of drawing blood for Satanic motives (synonymous with vampires), and perception of western medical technologies as instruments of the 'devil' created apprehension about HIV testing. HIV testing was viewed as plunging an individual into 'spiritual darkness, pain, loneliness and death'.
Financial Costs of Accessing HIV Testing In the context of fragile livelihoods, the direct and indirect financial costs of accessing testing services inhibited uptake of testing. Although HIV testing had become increasingly free in many settings of SSA in order to improve access levels, where user fees were charged, individuals weighed the benefits of testing against other competing human needs. More so, the indirect opportunity costs of suspending income generating activities and time-off work discouraged uptake of HIV testing. One respondent in Nigeria said:
"It costs 1000 Naira (approximately 8 US Dollars) to do blood test for HIV in the laboratories in Enugu. That is the minimum you can get it. I even heard that it costs more than that in some laboratories. So, why would I spend that amount of money to find out if I am HIV positive or not?" (24-year old non-tester, Nigeria).
Perceived Psychological Burden of Living with HIV The motivation to test also depended on a person's perceived ability to manage HIV. Even with availability of life-prolonging treatment, in many settings of SSA, a positive-HIV test result was still associated with death and mental distress was anticipated with an HIV positive test causing an individual to 'begin to think too much.' This was perceived as hastening physical deterioration of health:
"Why look for troubles; I will never do a test. I cannot look for my death. I am afraid of dying. Haven't you seen those who go for counselling? They are the ones who die very soon."(Male non-tester, Tanzania)
The reported absence of, or limited access to, treatment in some settings was a disincentive to test. Similarly, given the prevalence of HIV-TB co-infection, TB patients in Cameroon and South Africa avoided HIV testing to avoid the burden of being on dual strong treatment regimens for two diseases.
Discussion: Synthesis and Line-of-argument This synthesis shows that uptake of HIV testing in SSA is influenced by an array of individual, relational and contextual-based factors. While SSA is not a homogeneous setting, our synthesis suggests that the barriers and facilitators are comparable across SSA. It is worth pointing out that the factors influencing uptake of HIV testing are not mutually exclusive. As depicted by our conceptual model (Figure 2), they are inextricably linked and may coalesce or reinforce one another to influence uptake of HIV testing. Based on the analysis and interpretation of second-order constructs, high-level third-order constructs were developed (Table 2) to form a 'line of argument' about factors influencing uptake of HIV testing in SSA. These are condensed into four themes (Figure 2) and discussed as below:
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Figure 2.
Conceptual model of third-order constructs of nested relationships of factors influencing uptake of HIV testing.
Lay Construction of Risk of Infection and Health First, one dominant factor that influences uptake of HIV testing is lay construction of risk and health. Individuals engage in intense activity of experience-sorting and interpretation as they situate themselves in terms of danger. This lay assessment is informed by individuals' knowledge of own and partner's sexual behaviour and observations and experiences of their health. This lay analysis influences behaviour in two different ways. While heightened risk of infection provides impetus to test, there is also a disjunction between perceived risk of HIV infection and uptake of testing, as those who perceive themselves as being infected already do not see the value of knowing their HIV status. Thus, HIV testing is more often undertaken when there is clear decline in health status which necessitates access to health care.
Related to physical health is the psychological burden of living with HIV. Despite the increasingly wider availability of antiretroviral therapy in most parts of SSA, its impact on uptake of HIV testing still remains mixed. This is because while treatment is saving lives and has 'normalised' HIV from a fatal to a chronic condition, its incurable nature reduces the motivation to test (Figure 2). Knowing one's HIV status is viewed as imposing an inordinate psychological burden and is associated with imminent death. HIV testing is therefore undertaken when it is an absolute necessity – when diagnosis is needed to access health care.
Trust in the Health System and Conspiratorial Beliefs >Second, even when individuals view themselves at risk of HIV infection and/or are willing to seek HIV testing, uptake of testing is influenced by people's trust in the health care system and providers (Figure 2). The lack of trust manifests itself in lack of confidence in individual health workers and trust in the health institution as a whole. Perceived poor quality of health services as characterised by inability by health workers to maintain confidentiality, perceived poor calibre of health workers and lack of trust in testing technologies inhibit uptake of testing. As Gilson has noted, health systems are social institutions and therefore people's perceptions of and experiences with the health care system is crucial in influencing service utilisation which even good technical care may not remedy. Studies on trust conducted in the United States of America have reported how distrust of health providers and health system as a whole affect utilisation of HIV services. For instance, one study reported that trust in physicians was associated with acceptance of ART and a minority of individuals that felt mistreated by health care providers were resistant to accepting ART. Narratives from the synthesis indicate that lack of trust in health care providers was attenuated by the provision of HIV testing through non-facility based HIV testing by non-familiar providers, thus improving uptake of HIV testing (Figure 2).
Another dimension of lack of trust in the health system relates to conspiracy narratives (Figure 2). In a few settings of SSA, HIV and HIV testing were viewed as western countries' insidious ways of dominating SSA. HIV testing was viewed as being used to benefit western countries through creation of market for bio-medical products and job opportunities for its citizens. These geo-political conspiratorial beliefs sometimes coalesce with religious discourse. In Zambia for instance, blood drawn for HIV testing was viewed as being used for satanic rituals. These findings corroborate previous medical research conducted in Gambia and Zambia where local people were highly suspicious of and shunned medical tests which involved the drawing of blood.
Social Triad: Stigma, Gendered Influence and Reproductive Health Aspirations Third, HIV testing behaviour is strongly socially delineated. Social relationships play a significant role in influencing HIV testing behaviour through social influence and perceived (lack of) social support (Figure 2). For instance, in the absence of strong formal safety nets, social capital is central to survival. Therefore, the desire to preserve social relationships and identity inhibit uptake of HIV testing. This is because while individuals may acknowledge the importance of knowing their HIV status and even show willingness to seek testing in response to (perceived) decline in health or because of previous sexual risk behaviour, ultimate decision making and attitude towards testing is influenced by concerns about anticipated stigma, which is sometimes inextricably linked to possible loss of economic support. Thus, being found HIV positive represents an undesirable characteristic, a 'spoiled identity' from which individuals try to distance themselves.
Paradoxically, while the availability of treatment has become an incentive to test, a new form of stigma has emerged. A study in Tanzania found that while ART roll-out had led to the 'normalisation' of HIV and thus stimulated uptake of testing, the stigmatisation of people on treatment that they 'spread the disease' also undermined uptake of HIV testing.
Gendered power relationships also undermine uptake of HIV testing (Figure 2). In most parts of SSA, ultimate authority on health care seeking lies with men and communication with, and support from, partners improves uptake of HIV testing by women. This was a common narrative amongst women in some of the synthesised papers. Their lack of access to and control over financial resources affected their access to and utilisation of HIV testing services. Conversely as primary caregivers, their subordinate role in decision making about HIV testing was mitigated by their regular contact with reproductive and child health services, thus being able to utilise HIV testing services. The onset of provider-initiated HIV testing also absolved women from blame for testing without their partners' consent by shifting attention to testing as part of routine health care.
Similarly, the uptake of HIV testing is inextricably linked to individuals' marital and reproductive health aspirations. Thus, marriage and parenthood represent social duties, expectations and individual aspirations, and a connection with one's community. This affects uptake of HIV testing behaviour in two opposing ways. As an enabler, both men and women sought HIV testing as preparation for marriage or achieving reproductive health aspirations. Those that had never tested claimed willingness to seek HIV testing when it was time to get married. For women, as Fortes has put it, "the achievement of parenthood is regarded as a sine qua non for the attainment of the full development as a complete person to which all aspire….and a woman becomes a woman when she becomes able to bear children and continued child bearing is irrefutable evidence of continued femininity".
Narratives from the synthesised papers suggest that HIV testing was accepted during antenatal care primarily because it was essential for achieving reproductive health aspirations and as a moral and social obligation to give birth to a healthy child. On the other hand, both men and women declined HIV testing for fear of straining marital relationship or undermining chances of finding a marriage partner.
Organisation and Delivery of HIV Testing: Mitigating the Financial and Social Costs Lastly, the synthesis shows that uptake of HIV testing is influenced by the way HIV services are delivered. Where user-fees are charged or services are far away, investment in health (HIV testing) competes with, and is ranked low in relation to, other immediate human needs. This is because, for people in precarious living conditions, access to, and utilisation of, health care imposes inordinate opportunity costs. However, the roll-out of different HIV testing initiatives such as mobile HIV testing services, provider-initiated HIV testing, home-based HIV testing has mitigated these barriers such as distance, financial costs, long waiting times, inconvenient testing hours, and allayed fears of perceived lack of confidentiality. When individuals are in contact with the health system for other health conditions, provider-initiated HIV testing ensures uptake of testing not only because it is necessary and is conveniently available at the time of seeking medical attention, but also because it helps preserve service users' sense of moral worth by not making assumptions about their behaviour which could lead to stigmatisation. The drawback is that men shunned testing services even if they were readily available if they viewed them as being provided in settings perceived as 'female spaces' such as antenatal clinics.
Strengths and Limitations The strength of this synthesis lies in the extensive search of literature. The inclusion of papers utilising different methodological approaches, including mixed-methods papers provided in-depth insight into factors that influence uptake of HIV testing. Also, like previous studies that have used the meta-ethnography approach, not using pre-determined quality assessment criteria or excluding papers on the basis of pre-specified quality assessment criteria enabled us to draw on the 'richness' of these papers. Using a multi-disciplinary team also enriched the synthesis by enabling us to draw and collate team members' interpretations of the findings. However, an inherent weakness of this synthesis is the possibility of having missed some publications. We tried to mitigate this by scouring references of selected papers and manually searching the data bases. Another limitation of this synthesis is that due to language constraints, we only included papers published in English. Similarly, due to publication restrictions, the context of the synthesised studies were not extensively described thereby limiting detailed contextualisation of the synthesised findings and comparing the findings across different settings.