Introduction

HIV remains an ongoing global health concern. Among 38 million cases worldwide, sub-Saharan African (SSA) youth between the ages of 15 and 24 bear a disproportional disease burden [1]. In 2020, girls from that cohort made up six out of seven newly-diagnosed HIV infections worldwide [1]. Despite the high HIV incidence in this region and age group, some studies indicate youth have not perceived themselves to be at high risk of HIV acquisition, hindering HIV prevention efforts [2]. A contextual understanding of HIV risk perception, particularly among young sub-Saharan African women, is needed to address this aspect of the HIV preventive care continuum [3–5]. Such insight will provide a guide to health promotion and disease prevention programs globally.

In 2018, the Government of Kenya standardized and rolled out “test-and-treat” where interested individuals diagnosed with HIV immediately started on ART regardless of the CD4 count or viral load copies. At the same time the government began informational campaigns around Pre-Exposure Prophylaxis (PrEP) [6]. After the WHO recommended that HIV-negative individuals use ARVs for pre-exposure and post-exposure prophylaxis (i.e., PrEP and PEP) to prevent HIV infection in case of exposure in 2012, Uganda recommended the adoption of PrEP in its National HIV and AIDS Strategic Plan 2015–2019 [7, 8]. Kenya approved the use of PrEP beginning in 2015. Between May 2017 and August 2018, PrEP use increased twelve-fold in Kenya (from 1,425 people in 2017 to 17,466 in 2018), and by 2019 Kenya had the largest PrEP programme in Africa [9, 10].

Despite these positive developments, according to the UNAIDS data from 2018, the pace of HIV testing and linkage to care was too low (at 67%) to meet the 90-90-90 UNAIDS goals, especially among men. Recent work still indicates perceived low risk perceptions among youth in the contexts of prevention options uptake [11, 12]. While efforts to address some of the underlying factors behind this low uptake, such as increasing partner communication via HIV self-testing kits and the relationship between one’s own sexual behaviour and partner trust are ongoing, they present an opportunity to sharpen the commonly used Health Beliefs Model through the lens of how social script models influence risk perceptions [13]. This is especially pertinent to disentangling the relationship between sexual behaviour, communication, and trust.

We sought to evaluate youth risk perceptions in the context of the Sustainable East Africa Research in Community Health (SEARCH) trial, a community-based intervention tailored to HIV prevention and elimination by offering PrEP to individuals at risk of HIV in rural Ugandan and Kenyan communities, engaged in universal treatment and streamlined care services [14, 15]. This trial saw a massive uptake of testing, moving from 57% of the residents having had an HIV test before to over 90% within the first year of the study [16]. Many people learned their HIV status for the first time, which led to increased disclosure and consequent fear of stigma from disclosure, but also magnified linkage to care. Further, PrEP was offered at the end of Phase 1, which aimed at using streamlined care delivery to measure the impact of early diagnosis and ART delivery. Any one of these rapid changes could affect youth HIV risk perception. Understanding HIV risk perceptions among youth in SSA requires consideration of this dynamic character. The research question this paper examines is, “How are youth risk perceptions shaped by (while existing within) the context of rapid changes in the HIV prevention landscape?”

Risk perceptions are dynamic and modifiable in nature. Policies which acknowledge this complexity are crucial to achieve the greatest possible reach. We focus specifically on the complexities of risk perception as they relate to youth in the context of the rollout of PrEP and Test and Treat, as unpacking the complexity of youth HIV risk perception in full is beyond the scope of this paper. Such perceptions easily vary by demographic and contextual factors like age, education, wealth, religion, generational change and crucially, the introduction of novel therapies and more effective medications [17].

The Health Beliefs Model (HBM) posits that specific modifying variables, including how peers create normative behavior around risk by following context-dependent ‘social scripts’, influence risk perceptions and consequent uptake of preventative methods [2]. Modifying variables include the availability and accessibility of evolving health technologies, such as HIV testing and antiretroviral therapy (ART), community perceptions linked to HIV care and prevention, and HIV awareness as defined by community prevalence and incidence. The presence or absence of these influences may thus also affect what factors youth associate with HIV risk. Among the changing health technologies, rapid changes in HIV prevention between 2015 and 2018 included the introduction of PrEP and official support for U = U messaging campaigns. (U = U messaging informs the public that people with undetectable viral loads cannot spread HIV, under the slogan, “undetectable equals untransmissible”).

According to the HBM, the perceived threat of an illness, modifying variables, and cues to action all influence the likelihood of engaging in health-promoting behavior. For example, low perceived HIV risk decreases the likelihood of HIV testing and uptake of preventive measures [2]. The HBM has been applied to understanding risky behavior among youth in sub-Saharan African settings with varying results since the early 1990s [18]. However, the utility of HBM for HIV prevention behaviour could not be confirmed for condom use among students in late 1990s / early 2000s in South Africa [19]. Later, researchers there found that HBM predicts only about 25% of the acceptability of routine HIV testing among students, with perceived benefits having the greatest weight [20]. In contrast, Oyekale and Oyekale used the HBM to actively promote behaviour change among Nigerian youths in 2010. However, they did not find constructs in the HBM to predict behaviour. Instead, maturity, access to testing, family wealth, and educational background predicted a greater likelihood of changing behavior. Researchers applied the HBM to examine predictors of condom use among migrant construction workers in 2018 in Cameroon. They found perceived barriers overshadowed perceived benefits in predictive value, but HBM overall was not a significant predictor of consistent condom use [21]. Finally, a 2020 study in Malawi emphasized that more factors than risk perception are at play in PrEP interest among women [22].

Importantly, perceived benefits and barriers, in addition to perceived threat, are themselves subject to modifying variables like the influence of normative behaviour among peers, which changes based on age, gender, socio-economic status, and education. Multiple studies have borne this out. Gender norms have been found to influence risk perceptions for both women [22] and among men (in Ghana) [23]. Family connectedness competes with peer-exclusive networks to influence risk perception among youth in Ethiopia and KwaZulu-Natal [24, 25], even though peer networks among youth in Kenya and Malawi remain important for nearly all youth [26].

Assessing risk perceptions in the context of peer norms is important because in models of health behavior, especially those concerned with HIV [27], two factors are fundamental to the adoption of behavioral change: a) the perceived severity of the illness and b) the perceived susceptibility to that illness as mediated by peer norms. These two factors together form the ‘perceived threat’ in the four-part Health Belief Model (HBM) [27]. Therefore, the most useful parts of the HBM model to focus on concern perceptions that are amenable to peer norms. In both Nigeria and Cameroon, the interplay between perceived barriers and perceived access on the one hand, and socially mediated factors like age, wealth, and education on the other, highlight the importance of these peer-related variables.

Peer norms are often mediated by social scripts. Social scripts are models of social behaviour that allow people to perform certain activities near automatically, with a minimum of disruption because the models are both familiar and expected within a particular context [19, 20]. A subset of social scripts includes gender and sexual scripts [28, 29]. In these scripts, people play out certain expected behaviours which conform to the expected norms for their gender. Sexual scripts often intersect with gendered scripts to prescribe different (though overlapping) sexual behaviours for men and women [28].

Social and sexual scripts can be inherited from parents and communities but they can also be mediated or transmitted by peers within one’s age cohort. These scripts often underlie the dynamics which give rise to different risk scenarios for young men compared to young women, as noted in studies on risk behaviour [4, 30] and the societal expectations driving those differences. Crucially, social scripts are dynamic; when two or more actors are aware their scripts differ, as in intercultural exchanges, a new script can be negotiated or ‘co-written’ between two actors to smooth interactions and set common expectations [29]. While we wish to highlight the role that social scripts play in fostering perceptions of risk and informing the resultant behaviour among youth in our cohort, the purpose of this study is not to elucidate such scripts in full. Rather, this study seeks to build on the most replicable aspects of the HBM to examine youth perceptions of HIV risks and severity in the context of a rapid expansion of universal HIV testing and treatment in communities.

An earlier qualitative analysis by SEARCH investigators explored dimensions of PrEP uptake as influenced by mediating factors such as PrEP-related beliefs, HIV risk perceptions, and motivators for PrEP uptake and continuation [14]. This paper, informed by critiques of the HBM, differs from previous work by exploring how modifying factors influence HIV risk perceptions. Although the data is five years old, and despite having rolled out the HIV test-and-treat in Kenya in 2018, HIV incidence rate among youth remains significant. This study not only records a specific moment in time, but has the potential to continue to inform how researchers examine risk perceptions in rapidly changing health technology environments [1].

Methods

We use data collected through a qualitative study that was nested in the larger study Sustainable East Africa Research in Community Health (SEARCH) trial, a population-based HIV test-and-treat trial implemented in Ugandan and Kenyan communities with adult HIV prevalence from 7.9% (SW Uganda) to between 14.3% and 26% (Migori, Kisumu, and Homa Bay counties, Kenya) [31–33]. These communities are situated in the rural areas populated by fishermen, farmers, traders, school-going youth, and transporters such as bodaboda (motorcycle) drivers. The communities are also characterised by social dynamics like early marriages and intimate partner violence.

The qualitative sub-study employed both in-depth interviews (IDIs) and focus group discussions (FGDs) to explore individual perceptions. Because this was a population-level rollout of PrEP, we focused on FGDs alone because they provided insight into communal dialogue and debate in real-time, in contrast to IDIs which recorded individual perceptions without this communal dynamic influencing the reports.

Study design, sampling, and data collection

In 2016 and 2017, the SEARCH trial (NCT#01864603) conducted annual gender-specific focus group discussions (FGDs) in local languages to explore attitudes towards HIV, HIV knowledge, HIV risk perceptions, and interest in PrEP among youth ages 15–24 in the context of population-level PrEP implementation [34]. (See Table 1.) Community resident youth who participated in the FGD were purposively sampled for age, gender and having lived in the community for the past 6 months, through SEARCH-recruited Local Area Mobilizers (LAM) drawn from different social groups. The LAMs represented a range of youth peers drawn from various settings such as fishermen and fish traders, youth in school and out of school, bodaboda drivers, and farmers; they were further balanced by religion, marital status, age, and gender. Recruitment to the FGDs began on 16 September 2016 and ended on 5 May 2017 (the day of the final FGD).

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Table 1. Focus group distribution by community and participant numbers.

https://doi.org/10.1371/journal.pgph.0002922.t001

Each session comprised 8–17 participants. A total of 93 youth participated across all FGDs (48% male and 52% female). Each FGD lasted between 1.5 to 2.5 hours. FGDs were conducted with youth in five communities across the regions: two in Eastern Uganda, one larger FGD in Southwestern Uganda (where cultural norms dictate accompanying one another to social forums, leading to larger gatherings), and two in Kenya (see Table 1). The FGD guides assessed attitudes, beliefs, and social group norms related to PrEP, as well as target population insights into potential implementation strategies. We conducted the sessions in private settings within the community to ensure both confidentiality and access. Trained qualitative data collection researchers (two women and one man), who were experts in the local languages and who were familiar with these community settings [LO, IM, and AO] facilitated the sessions and participated in the analysis. Each FGD had one moderator and one field-note taker. FGDs were audio recorded, transcribed and translated into English for analysis.

Results

Tightly connected social networks and widespread uptake of antiretrovirals shaped youth HIV risk perception. We found complex and varied risk perceptions among participants showing that their health beliefs were influenced by their social ties in each aspect we studied. Below we decompose the category of perceived threat into perceptions of risk and perceptions of severity, before we describe the resulting interaction of perceived threat with youth-reported observations about peer norms as they influence the uptake of PrEP and other behaviours. Gendered differences in the dynamics of risk susceptibility were evident, while perceptions of the severity of HIV showed less distinct variations by gender, as noted below. We specify participants by their FGD participant number (e.g., “P5”), sex, community, and country.

Discussion

In this qualitative study conducted in the context of the SEARCH test and treat trial during the widespread offering of PrEP, we sought to explore the mechanisms of risk perception as framed in the construct of modifying factors from the Health Belief Model among young men and women ages 15 to 24 in rural Kenyan and Ugandan communities. Risk perception among youth at the time of PrEP introduction in East Africa was not well known, and this paper adds an understanding of a dynamically changing context through the lens of the HBM’s identification of the influence of those modifying factors. Specifically, we chose to focus on a specific modifying factor, i.e. the dynamic character of social scripts, as youth took those up and navigated through them in the context of a high HIV prevalence setting.

Participants cited the influence of peers at every stage in the formation of their health beliefs, whether as creating susceptibility to HIV through the impact of their peers’ behaviours or as exemplifying norms for our participants to follow. Our study and others [2, 37] suggest youth perceive high susceptibility because of inconsistent condom use, alcohol abuse, and intergenerational (transactional) sex among their peers. This means that our results demonstrate a post-facto judgement of risk, rather than an a priori assessment. This contrasts with Schaefer, who asserted that risk perception increases condom use [38]; we argue that lack of condom use either by oneself or among one’s peers increases risk perception before it increases condom use (if, in fact, condom use does increase). A study conducted in Uganda similarly showed the major drivers impeding behaviour change include not simply libido, but importantly peer pressure [39], while another conducted in Ethiopia mentioned peer pressure to have sex as a mediating factor [24]. Intimacy in the sense of pleasure was prioritized (sweet in its pack), but in contrast to much earlier findings from other regions, we did not find evidence of foregoing the use of condoms in order to demonstrate either virility or intimacy in the sense of trust or commitment in this sample [40–43].

Perceived threat, however, varies based on the particular social dynamics of gender and poverty in rural communities and the barriers these features raise to behavioural change. The study findings highlight the perceived susceptibility to transactional sex for both men and women. All youth voiced a desire for economic stability, which makes them vulnerable to older people who use wealth and the stability it promises in exchange for sexual favours. Young women, in particular, expressed little control over partner behaviors or felt pressured to engage in transactional sex. This perception has some epidemiological foundation [44, 45]. Similar experiences among young adults in Malawi [30], Tanzania [46], and South Africa [45] underscore the widespread lack of autonomy young women have when engaging in transactional sex even when they initiate such relationships [47]. In the context of widespread transactional sex, youth believe older men contribute to HIV transmission, creating the perceived dynamic of increased infection rates among both young women and young men due to such age-asymmetrical relationships [45]. Transactional sex, however, is nuanced and has its own peer norms and agentic behaviour, and both women and men do sometimes seek older partners who can pay for school fees or buy them nice things in order to be competitive with their peers; however, in the context of the interpersonal dynamics, women’s sexual agency in particular can be limited inasmuch as their reception of these material benefits is dependent on particular forms of sexual compliance [45, 46]. Further, this phenomenon produces different perceptions among men and women about each gender’s goals in pursuing sexual relationships, with men believing women are materialistic and women believing that men seek sex and will exchange material goods to obtain it. Together, the combination produces a feedback loop which raises the risk of HIV for everyone involved in this complex sexual economy. Ultimately, motivations to engage in transactional sex in our sample, as well as those from elsewhere on the continent, are driven by multiple, interpenetrating factors.

A persistent rumour youth report is belief that others engage in purposeful transmission of HIV, which youth tie to lack to disclosure. In contrast, participants in a study conducted in Botswana did not perceive high HIV severity because respondents believed people on ARVs do not necessarily increase risky sexual behaviors [48]. A study of HIV-positive MSM in the Southeastern and Midwestern US indicated that depressive symptoms and compulsive sexual behaviour were more highly associated with beliefs in intentional transmission of HIV [49]. Suggestively, sexual compulsivity was also expressed by multiple participants in our study. While both men and women sought multiple partners, the gender differences point to differing sexual scripts youth grapple with adopting or changing. Men reportedly engage in a supremacy battle of “who owns many sex partners’ among themselves, in line with other studies in Ethiopia [50]. Young women, in contrast, encourage their peers to also take multiple lovers as a form of ‘helping one another out,’ and debate over whether to follow their libido or be more sexually selective, while at the same time desiring to gain more sexual experience or maturity. In our sample we did not find many young women who seemed to prioritise being in a steady relationship, so we cannot say that they prioritized (non-financially-motivated) relationship security over using condoms. This is perhaps an artefact of the age group of our sample, and that once older, more stable relationships better fulfill gendered expectations and scripts. Self-fulfilling sexual needs through masturbation was also mentioned, suggesting that partnered sexual practice is not the sole script in a youth’s life. A high perceived impact of masturbation correlated with a high level of abstinence, and therefore a correspondingly lower risk of HIV in other contexts [51].

Similar to other studies on the continent, youth also accused parents of failing to offer appropriate guidance, not only abandoning informational support to other sources like school teachers, but also offering inadequate material support to the young woman, leading her to seek support elsewhere [52]. A Botswana study also found parents’ misperceptions about their adolescent children’s relationships to be associated with higher risk activities on the part of the adolescents [53]. Although nothing guarantees that youth will listen to their parents, the accusation that they do not provide any guidance at all highlights the possibility that parents don’t have a ‘script’ of their own to provide their children. They can provide neither behaviours to illustrate, nor health beliefs to pass on–perhaps trusting that teachers teach the necessary information. This is similar to the pre-intervention state in at least one intervention study conducted in South Africa, which demonstrated success in overcoming barriers on both the youth and parental sides of the equation [52].

Finally, some studies have raised the concern that normalizing HIV and ART can have the effect of lowering risk perceptions and consequent preventive behaviours–including testing behaviours [54]. In one study in South Africa, like in ours, the younger cohort feel HIV is a manageable illness today, even though they nonetheless fear getting a positive HIV test result. While that attitude can be interpreted as a contradiction, in the HBM it is explainable by the difference between risk perception and disease severity. While perception of HIV severity is low because it is treatable, risk perception can remain high, especially when the ‘risk’ extends beyond risk of the disease itself to involve the social consequences of living with the disease. Such consequences can include stigma and challenges to one’s social relations (e.g. finding a marriage partner, disclosure, etc). While such social consequences should be considered within the category of ‘severity’, too often a clinical approach focuses only on how a disease affects the body, which is then taken up socially. Broadening a strict disease-focus to include the social scientific recognition that illness is a biopsychosocial phenomenon that extends beyond the mere biomedical diagnosis of a disease means that care must be taken to determine whether lay participants include the social consequences of a diagnosis within perceptions about either severity of a disease or the risks it presents to their (socially-embedded) lives. In our cohort, youth appear to associate social consequences with over-all risk perception (i.e. likelihood of acquiring the infection and what it means socially), rather than severity (i.e. degree to which it affects the body and care of the embodied self).

Supporting information

Acknowledgments

We gratefully acknowledge Dr. Dickens Aduda of JOOUST for reviewing the primary concept, the Ministries of Health of Kenya and Uganda, the SEARCH research team, collaborators and advisory boards, and especially all communities and participants involved.