Bernays S et al.

Journal of the International AIDS Society 2023, 26:e26153

http://onlinelibrary.wiley.com/doi/10.1002/jia2.26153/full | https://doi.org/10.1002/jia2.26153

RESEARCH ARTICLE

“They test my blood to know how much blood is in my body”: the

untapped potential of promoting viral load literacy to support
adherence and viral suppression among adolescents living with
HIV
Sarah Bernays1,2,§ , Joni Lariat1 , Frances Cowan3 , Beula Senzanje4 ,
Nicola Willis5 and Zivai Mupambireyi Nenguke6
§ Corresponding author: Sarah Bernays, School of Public Health, University of Sydney, Camperdown, NSW 2006, Australia. ([email protected])

Abstract
Introduction: Achieving sustained HIV viral suppression is a key strategy to optimize the health and wellbeing of those living
with HIV. Sub-optimal adherence to antiretroviral therapy (ART) in adolescents and young people living with HIV (AYPLHIV)
in Southern Africa, due to a range of social and contextual factors, including poor mental health, has presented a substantial
challenge to meeting targets aimed towards improving treatment outcomes and reducing transmission. With the increasing
availability of viral load (VL) testing in Southern Africa, there is an opportunity to better understand the relationship between
VL literacy, wellbeing and adherence among adolescents.
Methods: We conducted qualitative interviews with 45 AYPLHIV aged 10–24 years in three districts (urban, peri-urban and
rural) in Zimbabwe between March and August 2021. The sample was purposively selected to represent a range of experi-
ences related to HIV status disclosure, gender, marital status and treatment experience. Separate workshops were conducted
with 18 healthcare workers (HCWs) and 20 caregivers to better understand existing support mechanisms to AYPLHIV access-
ing ART. We used thematic analysis to examine adolescent VL literacy, treatment support networks, experiences of clinic inter-
actions, VL testing procedures and barriers to adherence.
Results: VL literacy was consistently under-developed among participants. Comprehension of phrases commonly heard during
clinic visits, such as TND (target not detected) and “high” and “low” VL, were better understood by older participants. VL
testing was predominantly understood as a clinical procedure that enables HCWs to monitor treatment adherence. Absent
throughout the interviews were descriptions of how viral suppression improves health and quality of life, likely fosters
wellbeing and enhances self-esteem, enables participation in education and social activities, and eliminates the risk of onward
transmission.
Conclusions: It is imperative that we reconsider how routine VL monitoring is communicated to and understood by AYPLHIV.
Reframing ART, including VL test results, in terms of the psychosocial benefits that viral suppression can generate is likely
to be crucial to motivating AYPLHIV to maintain optimal treatment engagement and develop self-management approaches
as they move into adulthood. Access to accurate information tailored to individual concerns and circumstances can support
AYPLHIV to achieve wellbeing.

Keywords: adolescents; HIV; antiretroviral therapy; adherence; viral load literacy; viral suppression

Received 18 January 2023; Accepted 16 August 2023

Copyright © 2023 The Authors. Journal of the International AIDS Society published by John Wiley & Sons Ltd on behalf of the International AIDS Society.
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,
provided the original work is properly cited.

1 INTRODUCTION The usual stressors associated with adolescence that place

adolescents and young people at higher risk of mental health
Adolescents and young people living with HIV (AYPLHIV) conditions [9] are exacerbated by the additional challenges
continue to have the worst health outcomes of all age groups AYPLHIV face during this period [9–11]. This can significantly
living with HIV [1]. Rates of viral suppression remain lower in impact treatment adherence, leading to inconsistent viral load
this group than in children and adults, due to higher rates of (VL) and low rates of viral suppression [9, 12–16]. Adherence
attrition from care and suboptimal adherence to antiretroviral and retention in care has also been shown to be impacted by
therapies (ARTs) [2–8]. structural factors associated with poverty [17]; social stigma

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Bernays S et al. Journal of the International AIDS Society 2023, 26:e26153
http://onlinelibrary.wiley.com/doi/10.1002/jia2.26153/full | https://doi.org/10.1002/jia2.26153

[2, 3, 18]; relationships with healthcare workers (HCWs) and an urban primary care facility and a peri-urban secondary care
caregivers [19, 20]; and, the transition from adolescent to facility. Forty-five AYPLHIV out of 63 eligible individuals were
adult HIV care and from caregiver-supported to autonomous selected from facility ART registers (15/site), using purposive
treatment taking [21]. These factors are interconnected and sampling with the aim of maximum variation, considering age,
are exacerbated by the limited opportunities available to gender, duration on ART, current ART regimen (first/second
address mental health challenges arising from growing up with line), timing of last VL test and mode of transmission. All par-
HIV, particularly in resource-constrained settings, such as in ticipants were fully aware of their HIV status prior to enrol-
Southern Africa where the epidemic has been concentrated ment in the study.
[9]. Significant attention has been invested in supporting
adherence interventions [22] with variable success and patchy
coverage [22, 23]. However, a pattern has emerged that the 2.2 Data collection
most effective interventions in improving adherence primarily
focus on providing psychosocial care, commonly delivered by Individual semi-structured interviews with AYPLHIV, con-
peers, to support AYPLHIV’s wellbeing [24–30]. ducted by local, trained social scientists, explored their experi-
Routine VL testing is a critical component in improving ences of VL testing, understanding of viral suppression and its
treatment opportunities for HIV in resource-constrained set- influence on treatment engagement and wellbeing. Three par-
tings, and is a particularly useful tool among groups with a ticipatory workshops (one/site) were conducted with 20 pur-
high risk of virological failure, such as adolescents [31], to posively selected caregivers (aged 39–64 years) connected to
identify how to target enhanced support [6]. AYPLHIV and three participatory workshops with 18 HCWs
Adolescents often have poor HIV literacy, particularly in (aged 34–54 years) who directly provided HIV treatment and
low-and-middle-income settings where resources are limited care services to AYPLHIV. Conducted by the same team of
[32, 33]. As VL monitoring has become more widely avail- local, trained social scientists, these workshops explored their
able in most settings, VL literacy, that is understanding the perspectives on improving adolescent adherence, including
meaning of VL test results and the broader implications of how VL monitoring could be better communicated to adoles-
these results for health and wellbeing, could become a core cents. To maximize participation, we used participatory tools,
component of HIV literacy. For example, understanding Unde- such as voting and topic cards.
tectable equals Untransmittable (U = U) and Treatment as
Prevention (TasP) has changed the narrative about what it
means to live with HIV and is the basis for much of the opti- 2.3 Data analysis
mism around the global targets aiming to “eliminate” AIDS. All the data were audio-recorded, transcribed verbatim and
VL literacy is having a positive effect on stigma reduction translated from the local languages of Shona and Ndebele
and improving wellbeing among adults who are living with into English for analysis. A coding framework was devel-
HIV [34, 35]. However, VL literacy among AYPLHIV has oped by SB and JL through independent line-by-line coding.
received little attention. Significantly, the emphasis on adher- The coding framework was finalized through consensus and
ence behaviour among adolescents in the literature remains then applied to all remaining transcripts to conduct thematic
orientated towards protecting against ill health rather than analysis. Themes and patterns were identified by triangulat-
optimizing good health and quality of life [36]. ing the data, to support insights into AYPLHIV’s lived expe-
Given how integral viral suppression is to current 95-95- riences within the broader relational context which framed
95 global targets, particularly among the most vulnerable and their understanding of VL literacy.
at risk groups, it is important to understand how AYPLHIV
understand VL results, how this influences their treatment
engagement and the potential value of investing in its devel- 2.4 Ethics
opment. In this paper, we examine how AYPLHIV understand
VL monitoring and consider how improved VL literacy might The Ministry of Health and Child Care (Zimbabwe) approved
impact upon the interconnected spheres of AYPLHIV wellbe- the study and ethical permission was granted by the Medi-
ing, adherence and viral suppression. cal Research Council of Zimbabwe (MRCZ/A/2657). Written
informed consent/assent were obtained from all participants.
Parental informed consent was sought for all adolescents
2 METHODS below the age 18 years from primary caregivers. Pseudonyms
have been used in this paper to protect anonymity.
2.1 Study design and sampling
This paper draws on qualitative data collected through individ-
ual in-depth interviews with 45 AYPLHIV aged 10–24 years 3 R E S U LT S
and six participatory workshops conducted with 20 caregivers
and 18 HCWs between March 2021 and August 2021. Partic- Forty-five AYPLHIV aged 10–24 years were recruited. The
ipants were recruited in three healthcare facilities from high sample characteristics are outlined in Table 1. All partici-
HIV burden districts in Zimbabwe: Harare (Hopley), Bulilima pants were attending community-based psychosocial support
and Buhera districts; representing a rural primary care facility, groups.

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Bernays S et al. Journal of the International AIDS Society 2023, 26:e26153
http://onlinelibrary.wiley.com/doi/10.1002/jia2.26153/full | https://doi.org/10.1002/jia2.26153

Table 1. Characteristics of AYPLHIV study participants Table 3. Characteristics of healthcare worker study partici-
(n = 45) pants (n = 18)

District Buhera Bulilima Hopley Healthcare worker (n = 18)

Characteristics Characteristics
Age Sex
10–14 years 3 3 5 Male 3
15–19 years 6 6 6 Female 15
20–24 years 6 6 4 Employment position
Orphanhood status Opportunistic infection nurse 10
Double orphans 4 7 5 Primary care counsellor 8
Maternal/paternal 5 5 7
Non-orphans 6 3 3
ART the virus. Most younger participants (10–14 years old) had
First line 12 13 10 only a limited understanding of what their VL results meant.
Second line 3 2 5 Older adolescents (aged 16–24) typically demonstrated a
Marital status greater understanding of how VL results provide information
Married 4 1 2 about their body’s immunological response to the virus and
Single 11 14 13 their treatment.
Note: The sample characteristics of the 20 caregivers (aged 39–64
“On viral load they will be checking if you are taking
years) and 18 healthcare workers (aged 34–54 years) are outlined in
Table 2 and Table 3, respectively.
your medication correctly and if you are not defaulting.
They will be checking to see how many soldiers [CD4
cells] are in your body and if they can suppress your
Table 2. Characteristics of caregiver study participants
viral load.” (Susan, 23-year-old female)
(n = 20)
Many older adolescents (16+) were able to explain the clin-
Caregiver (n = 20) ical objective of VL testing:
Characteristics
“When they are testing your viral load, the reason is to
Sex see how many red blood cells you have and how much
Male 3 virus you have in your blood and whether it is going
Female 17 up or going down or it’s stagnant.” (Richard, 24-year-old
Marital status male)
Married 10
Single 4 Although HCWs reported providing age-appropriate
Widowed 6 immunological explanations when introducing VL testing,
Employment status younger adolescents were rarely able to confidently recount
Formally employed 4
them during our interviews. Several participants reported that
they could not remember ever being told why their blood was
Informally employed 5
being tested and they did not know what VL testing meant.
Unemployed 11
Consistently, the primary reason that AYPLHIV gave for
Caregiver type why blood was being taken, was to allow HCWs to infer
Biological parent 12 whether they were taking their treatment as “they should.”
Non-biological primary caregiver 8 Even among those who were familiar with the term “sup-
pressed” or “undetectable,” VL testing was defined as a proxy
for assessing adherence behaviour.
3.1 VL literacy
Interviewer: Alright so how does having a suppressed
Most adolescents understood that HCWs used VL testing viral load help you?
to monitor adherence and identify problematic adherence
behaviour. There was little evidence to suggest that AYPL- “Participant: It helps because I would have followed
HIV understood how viral suppression might positively impact all the instructions properly.” (Thembinkosi, 21-year-old
their social and relational lives. female)
Participants had, at the minimum, a basic knowledge about
how HIV impacts the body and the importance of ART. Many Across all age and gender groups, further understanding
drew on well-developed metaphors, such as describing CD4 about VL, such as what an undetectable VL means and
cells as soldiers, to explain the interaction between ART and how viral suppression prevents onward transmission, was

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Bernays S et al. Journal of the International AIDS Society 2023, 26:e26153
http://onlinelibrary.wiley.com/doi/10.1002/jia2.26153/full | https://doi.org/10.1002/jia2.26153

limited. Only one participant, a 24-year-old male trained as ticularly those who are HIV seronegative, are also unaware of
a CATS in an HIV peer-support programme, was able to this information.
describe the relationship between being undetectable and
transmissibility:
3.3 Deductive interpretation of results
“Having an undetectable viral load helps in that if you Whether adolescents became aware of their test results was
are a guy, and you have a girl, if you have sex your variable but appeared to depend largely on their age and VL
chances of infecting her are low.” (Richard, 24-year-old result. For those who returned a low or undetectable VL,
male) results were noted in their medical file and tended not to be
discussed with them. Some older participants reported taking
the initiative to independently check their results. However,
3.2 Missed opportunities to develop VL literacy
without having had prior opportunities to develop their under-
Throughout our interviews, a pattern emerged of missed standing of what the results could mean and in the absence
opportunities during the process of VL testing to explain the of any guided interpretation, it remained just a number which
procedure taking place, or to enhance or reinforce clinical held little interpretive value.
knowledge about HIV, ART and VL testing, and critically to All participants assumed that the absence of any interven-
foreground the psychosocial benefits of achieving a low or tion or discussion with staff about their test results indi-
undetectable VL. There were no reported examples of nursing cated that no adjustments were needed and that there was
staff utilizing the interaction to reinforce existing knowledge no cause for immediate concern. The opportunity to provide
or develop new understandings that might incentivize optimal direct reassurance about what could be deduced from an
adherence. undetectable result or to further incentivize continued adher-
HCWs explained the constraints that limit their ability to ence went unrealized.
engage consistently in detailed conversations about VL test
results with all the AYPLHIV in their care.
3.4 Caregivers’ engagement with VL results: no
news is good news
“We see a lot of children in a day and it’s very difficult
to remember when the VL was taken and if the results Caregivers described a strong sense of responsibility to
were disseminated or not, especially for those with a ensure their child’s optimal adherence, especially among those
suppressed viral load. Remember we are overwhelmed, with children under 15 years old. However, for many, accom-
and we will be in a rush to serve other clients. If par- panying their child to clinic appointments to check on their
ents ask for the results, they will be shown.” (35-year- adherence and health was rarely feasible given their other
old female nurse). income-generating and/or additional caring commitments. Sev-
eral caregivers of older adolescents, who are encouraged to
attend independently, said that they often felt frustrated by
As illustrated, HCWs must triage their clients according to
the lack of information they received from their child and the
need. Those with a suppressed VL who are not in immediate
inconsistent contact they had with HCWs. It was common
need of referral to counselling will often receive less direct
that they would get information inadvertently when the clinic
attention from nursing staff because they were not consid-
called searching for their child who may have missed a review
ered in need of “enhanced support.”
or had received a high VL test result.
Caregivers primarily characterized their role in their ado-
Even among the caregivers who were able to attend the
lescent’s HIV treatment as being one of treatment supervi-
clinic with their child, this rarely facilitated access to per-
sion and encouragement. None suggested that they explained
sonalized information about their child’s state of health, with
VL test results beyond whether they were low or high or the
minimal discussion of their child’s results within these clinic
broader implications of viral suppression.
reviews. Their limited engagement with VL monitoring fol-
lowed a similar pattern to that observed among adolescents,
“Our job as parents is to encourage them to take their in which they assumed that an absence of action (and related
medication correctly without skipping and taking it on discussion) by HCWs could be interpreted as a positive signal
time so that their viral load will remain low and taking of their child’s health.
balanced diet meals. We also encourage them if they We found that caregivers’ VL literacy was also limited, fol-
are dating to use protection so that they will not spread lowing a similarly narrow pattern to young people in which VL
the virus and protect their partners” (Luyanda’s mother, testing should serve only to monitor adherence behaviour. As
45 years old). 19-year-old Sandile explained, “my mother receives my results
and then she encourages me to continue taking the medica-
For many caregivers, encouragement extended to various tion because my life depends on it.” For ethical reasons, care-
aspects of everyday life, including diet and relationships. This givers were not asked to reveal their HIV status, but given at
shows that discussing sex, in the context of HIV prevention, least some were their child’s biological parent, it is reasonable
is not necessarily a silenced or avoided topic. It also shows to assume that some may have also had a positive HIV status,
that the link between aiming for sustained viral suppression suggesting that they may not have been aware of (or willing to
and the risk of onward transmission is not fully explored for reveal) a fuller understanding of the implications of viral sup-
its motivating potential. This could be because caregivers, par- pression.

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Bernays S et al. Journal of the International AIDS Society 2023, 26:e26153
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3.5 A clinical gauge of behaviour: reinforcing cial support for AYPLHIV and so are likely to have better
binary categories of good or “failing” adherence VL literacy than those who are not engaged in support pro-
grammes, suggesting that low levels of VL literacy is likely to
The categorization of test results as either “high” (above be a widespread problem. This is reinforced by the relative
1000 copies/ml) and “low” (below 1000 copies/ml) VL enabled absence of any focus on VL literacy for AYPLHIV within the
HCWs to quickly determine a patient’s clinical care require- literature [36].
ments. A high result triggered an alternative course of action: This study also supports what is already well-documented
increasing the frequency of clinic visits with treatment given in the literature: that when discussions do occur, they tend
only for 1 month at a time, rather than for 3 months, and a to focus on mitigating the negative outcomes of suboptimal
referral for enhanced adherence counselling. adherence [21, 37, 38], and overcoming adherence barriers
Many adolescents considered that their relationships with through practical strategies, such as developing a better rou-
HCWs hinged on the return of a “low” test result. An 11- tine, reinforcing the need for parental supervision or disciplin-
year-old boy, Edward, said that “I get along with the nurses ing what are perceived to be negative attitudes towards treat-
because I follow their instructions and I take my medicine ment [10, 21, 39]. Rarely, if ever, was VL testing harnessed
on time,” suggesting that a smooth relationship depends as an opportunity to explain the benefits of viral suppression
upon demonstrating (through VL test results) good adher- for AYPLHIV’s social and relational lives. This was clear in
ence behaviour. Young people anticipated that HCWs would the consistent silence that immediately followed interviewer’s
interpret a “high” VL, which was assumed to be a proxy invitation for AYPLHIV participants to share their understand-
for non-compliance, as reflecting disobedient or troublesome ing of viral suppression and what an undetectable VL means.
behaviour, thus negatively impacting their relationship. Given It was also clear in how caregivers and HCWs described their
caregivers’ sense of responsibility for ensuring adherence, roles in supporting AYPLHIV.
framing VL results as reflective of behaviour may have had Currently, VL monitoring is used to assess progress
wider repercussions, further entrenching secrecy about the towards global and national targets, or to identify adherence
drivers of precarious adherence. It was not implied or explic- behaviour issues at the individual level. Limiting the use of
itly stated that a bad experience with an HCW influenced test results in this way forgoes a critical opportunity for it to
non-attendance. Given the lack of alternatives and that young simultaneously be used as a social tool to build health literacy
people may not recognize that the care they receive could be and motivation among AYPLHIV, as well as to support differ-
different, we would expect that they would still attend but entiated tailored support at an individual level. Furthermore,
might be even more reluctant to share their concerns or ques- by perpetuating a false binary that adherence falls into two
tions. discreet categories (good/bad), current efforts fail to reflect
Occasionally, however, participants expressed that monitor- that achieving and sustaining viral suppression is challenging
ing would facilitate access to help for challenges they are fac- and likely to be an imperfect journey. We propose that this
ing, and support HCWs to recognize potential indicators of narrow framing misses out on building VL literacy by centring
poor wellbeing not otherwise identified through discussion, as the psychosocial benefits of viral suppression in conversations
exemplified in the following quote: between HCWs, adolescents and their caregivers may incen-
tivize adherence, which in turn may support positive outcomes
Viral load testing means that I can be helped on time. for wellbeing.
They (HCWs) say that if I don’t get tested there is no
way they are going to be able to help me. Let’s say I
don’t get tested. Maybe I am not taking my medication 4.1 More than a number: translating viral
well, I just have them at home, then I don’t get tested suppression into socially enabling narratives
so there is no way they are going to know what is hap- The untapped potential of VL literacy noted in our study
pening to me. (Richard, 24-year-old male) reflects a trend identified in a recent World Health Organi-
zation (WHO) global consultation with AYPLHIV, which found
The singular focus on rectifying “poor” adherence, without very uneven VL literacy among young people [40]. This gap
also reinforcing good adherence behaviours or offering opti- between assumed and actual knowledge may explain why the
mistic narratives associated with viral suppression, appeared need for investment in conversations to generate and sus-
to leave some participants resistant to engage with available tain a widespread understanding of the positive implications
support. They considered that VL monitoring risked punitive of viral suppression remains under-recognized. VL literacy can
consequences, reinforcing the limited conceptualization of VL enable test results to be interpreted as more than a number
testing as serving to identify, and potentially “catch out,” those reflecting good or failing adherence and can equip adolescents
who are struggling. to appreciate the value of their adherence more broadly. It
can stave off complacency and motivate continued adherence
because of the proof that it provides that their treatment is
4 DISCUSSION working. This is critical given that research with young peo-
ple has indicated that in the absence of accurate information
This study revealed low levels of VL literacy among par- about how ART works, feeling healthy and not experiencing
ticipants, indicating that VL monitoring is under-utilized in symptoms can appear to justify stopping treatment [39].
the treatment and support of AYPLHIV. Participants in this There is growing evidence that integrating person-centred
study were all attending support groups providing psychoso- psychosocial support and HIV clinical care has the potential to

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http://onlinelibrary.wiley.com/doi/10.1002/jia2.26153/full | https://doi.org/10.1002/jia2.26153

significantly improve wellbeing among PLHIV [13, 14, 41–43]. nent in HIV support and counselling for all PLHIV, includ-
The evidence also suggests that improved wellbeing can facil- ing adolescents and young people [36]. It is well documented,
itate consistent adherence and increase the likelihood of sus- and supported by HCWs accounts in this study, that HCWs’
tained viral suppression [13, 14]. Our findings, and that of the lack the time, training, access to tailored resources and guide-
WHO global consultation [40], suggest that conveying VL test lines to be able to prioritize talking with young people about
results in ways that are individually meaningful may allow ado- their health, whether it be HIV status, ART or VL literacy
lescents to appreciate the relevance of their results and this [45, 46]. Developing HCWs’ communication competency, con-
may, in turn, support improved adherence. AYPLHIV in this fidence and access to tailored resources and guidelines that
study highlighted the significance of relationships with fam- emphasize the need to prioritize talking with AYPLHIV about
ily and friends, future intimate relationships, avoiding stigma, their health will be required. While tailored to the develop-
looking healthy and having an ordinary life as key barriers and mental stage, VL literacy should be integrated into the pro-
motivators for maintaining optimal adherence. Translating VL cess of disclosure, so that the relationship between adher-
test results from a number to a story that extends beyond ence, viral suppression and wellbeing is introduced from the
the clinic into young peoples’ lives sparks the potential of VL earliest opportunity. We need to create space and time for
to radically transform young people’s relationship with their these intentional conversations to occur, given that finding
health and treatment. such opportunities within existing care are becoming more
Ross and colleagues’ five domains of adolescent wellbeing challenging as efforts focused on fast-tracking clinical care
is useful for considering the opportunities facilitated by and reducing HCWs’ engagement with clients at health facil-
developing VL literacy among AYPLHIV [44]. The framework ities are stepped up. Once initiated, opportunities for further
describes the multidimensionality of adolescent wellbeing reinforcing discussion could be cascaded throughout the psy-
and the support needed to achieve wellbeing within each chosocial support AYPLHIV receive as part of their care. For
domain. It encompasses the subjective, objective and rela- example, the promotion of VL literacy could be supported by
tional constructs of wellbeing, and so includes feelings of trained, mentored peer counsellors within the clinic or outside
optimism and fulfilment, access to material resources, such of healthcare facilities, who can be part of providing psychoso-
as income, food, housing education and social networks, and cial support as integral to standard care for AYPLHIV.
harmony across one’s personal, societal and environmental Our research has contributed to the development of
relationships [44]. The framework’s emphasis on adolescents’ resources to support this shift in practice. We developed a
right to information, care and services to promote agency VL literacy package for AYPLHIV which included two anima-
and resilience is particularly relevant to what VL literacy may tions “Not just a number: Understanding your viral load” and
enable for AYPLHIV. “Taking charge of HIV: The journey to undetectable” [47, 48]
Although our findings highlight its absence, drawing on the and accompanying discussion guides to be disseminated by
emphasis participants’ placed on healthy relationships, we pro- the peer-led HIV and mental health programme, Zvandiri, as
pose that conversations with HCWs and knowledgeable care- online resources. To ensure the relevancy and fidelity of our
givers who explain the clinical meanings of VL results through findings, we infused the personal narratives of the fictional
the social benefits that viral suppression facilitates are likely characters with the words, experiences and aspirations of the
to enable young people to appreciate how their health and young people who participated in this study. These are yet to
wellbeing are interconnected. Our hypothesis that there is be evaluated, but anecdotally have been useful tools for CATS
considerable untapped value in VL literacy if it aims to moti- to describe VL in their interactions with AYPLHIV.
vate and build self-esteem and hope is supported by its align-
ment with the key dimensions of sustained and supported
adolescent wellbeing described by Ross and colleagues [44].
4.2 Taking “perfect use” off the table: reframing
Using VL testing to connect viral suppression to these desired
adherence as precarious and always in need of
outcomes and grounding them in conversations about their
responsive support
interests, hobbies, values, worries and hopes for the future
is likely to enhance the value of VL testing by presenting Research has shown that adherence can not be understood as
it in ways that appear to be meaningful and consequential detached from the social and relational lives of those engag-
for young people. For example, a key insight from the WHO ing in ART, but is an active practice that waxes and wanes in
global consultation [40] was that emphasizing the health and accordance with shifts in motivation and competing burdens
social benefits associated with sustained viral suppression rad- and responsibilities [21, 39, 49]. Shifting focus from “non-
ically improved mental health and wellbeing. Benefits such adherent” or “failing” adherence, by taking “perfect use” off
as increased energy levels, improved physical appearance, the table and situating VL test results within an individual’s
enhanced capacity to engage in educational, employment and treatment journey could improve AYPLHIVs’ relationships
social activities, and the possibility that the risk of onward with HCWs and motivate consistent engagement [10, 50, 51].
transmission (to a partner or future child) can be eliminated AYPLHIVs’ understandings of “health, illness, and medicines-
were described by participants in the consultation as truly taking” is in flux; it is in a constant process of re-definition,
motivating. We suggest that these are the very supports ado- often experienced in tension with the production of those
lescents need to achieve the social connectedness, agency and very themes at home, in the clinic and in the broader social
resilience that are the basis for optimal wellbeing. contexts in which their lives are lived. “Doing adherence” bet-
Facilitating this shift towards improved VL literacy requires ter captures the lived reality of what it means for AYPLHIV
recognizing and investing in VL literacy as a central compo- to engage in long-term ART because it acknowledges the

6
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Bernays S et al. Journal of the International AIDS Society 2023, 26:e26153
http://onlinelibrary.wiley.com/doi/10.1002/jia2.26153/full | https://doi.org/10.1002/jia2.26153

necessary everyday work required to constantly and consis- counsellors are operating, suggesting our findings likely reflect
tently reinstate ones’ treatment practices in such flux [52]. a best-case scenario. Participants in this study echoed findings
To maximize the potential of VL literacy to support sus- in other studies, particularly in terms of the social barriers
tained viral suppression, we propose a model of psychoso- they experience when navigating their HIV status and treat-
cial support, focused on young people’s five domains of well- ment adherence within their friendships and intimate relation-
being [44], that assumes adherence is precarious and likely ships.
to fluctuate. Viral suppression needs to be seen as a jour-
ney, recognizing the unstable terrain of adolescents’ lives and
not assuming adherence behaviours and VL will remain stable
5 CONCLUSIONS
or consistent. Given this, AYPLHIV are likely to need contin-
We argue that investing in VL literacy holds great promise
ual support over time, understanding of their individual cir-
and ought to extend beyond simply inviting AYPLHIV to
cumstances and transparent acknowledgement that maintain-
understand how ART is suppressing the virus in their body. It
ing adherence is difficult [21, 40, 53]. Improving VL literacy
is cogent that we use VL literacy to develop a range of moti-
equips adolescents with the knowledge that will allow them
vating narratives about what a suppressed VL represents in
to understand their clinical results as part of this journey [36].
individuals’ social and relational lives, both present and future.
However, educating adolescents on the clinical implications of
Translating the clinical benefits of viral suppression into mean-
VL results alone does not go far enough. Sustained adherence
ingful narratives relevant to adolescents’ wellbeing and prior-
requires making space for AYPLHIV to share in a supportive
ity concerns may instil the hope and motivation critical to the
environment, for example with their peers, their experiences
pursuit of sustained long-term viral suppression.
of managing treatment and to realize with them what viral
suppression might mean for their relationships, their physical
and mental health, and their personal goals [26, 54]. A U T H O R S ’ A F F I L I AT I O N S
A first step is to move away from the dichotomized way in 1 School of Public Health, University of Sydney, Sydney, New South Wales, Aus-
which adherence is evaluated on the basis of VL results. If we tralia; 2 Department of Global Health and Development London School of Hygiene
use the analogy of a traffic light, VL results produce either a & Tropical Medicine, London, UK; 3 Liverpool School of Tropical Medicine, Liver-
pool, UK; 4 UNICEF, Harare, Zimbabwe; 5 Zvandiri, Harare, Zimbabwe; 6 Centre for
green or red light: a go or stop. Reimagining adherence more Sexual Health, HIV/AIDS Research (CeSHHAR), Harare, Zimbabwe
realistically and compassionately as “always on amber” recog-
nizes that all adolescents are always at risk; that their current
location is always only temporary. An amber approach expects COMPETING INTERESTS

there to be problems and invites anticipatory conversations The authors declare that they have no competing interests.
with adolescents about the complicated realities that impact
their ability to maintain motivation and routine. AUTHORS’ CONTRIBUTIONS
ZMN and SB performed the research. ZMN, SB and FC designed the research
4.3 U = U: you cannot become what you do not study. BS and NW contributed essential input to the design and focus of the study
and paper. SB, JL and ZMN analysed the data. SB and JL wrote the first draft of the
know is possible paper, with all of the co-authors reviewing subsequent drafts and approving the
Among population groups where U = U messaging has been submitted version.

promoted, a reduction in stigma and improved self-image has

been reported [35, 55–58]. Communicating U = U requires ACKNOWLEDGEMENTS
crafting the message to respond to different populations’ atti- The authors gratefully acknowledge all the participants who took part in the study,
tudes, existing knowledge and local contexts [59]. Responsible the research team for data collection that made this analysis possible, Zvandiri for
reception of U = U messaging for adolescents can be intro- supporting recruitment and dissemination of our findings within the community
duced by first building VL literacy, and then extended through and UNICEF Zimbabwe which funded the study.
Open access publishing facilitated by The University of Sydney, as part of the
age-appropriate approaches, which are in step with AYPLHIVs’ Wiley - The University of Sydney agreement via the Council of Australian Univer-
concerns and priorities. Embedding U = U within broader VL sity Librarians.
literacy may help to alleviate carer and HCW concerns about
complacency and the possibility of inconsistency in routine D ATA AVA I L A B I L I T Y S TAT E M E N T
testing, but it also lessens the risk that adolescents hear U =
The data that support the findings of this study are available on request from the
U without a full appreciation of how ART works to make that corresponding author. The data are not publicly available due to privacy or ethical
possible. restrictions.

4.4 Strengths and limitations

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