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RESEARCH ARTICLE
Project YES! Youth Engaging for Success: A
randomized controlled trial assessing the
impact of a clinic-based peer mentoring
program on viral suppression, adherence and
internalized stigma among HIV-positive youth
(15-24 years) in Ndola, Zambia
Julie A. DenisonID
1
*, Virginia M. Burke
1
, Sam Miti
2
, Bareng A. S. Nonyane
1
,
Christiana Frimpong
2
, Katherine G. Merrill
1
, Elizabeth A. Abrams
1
, Jonathan K. Mwansa
2
1Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore,
Maryland, United States of America, 2Arthur Davison Children’s Hospital, Ndola, Zambia
*jdenison@jhu.edu
Abstract
Background
Youth-led strategies remain untested in clinic-based programs to improve viral suppression
(VS) and reduce stigma among HIV-positive adolescents and young adults (AYA) in sub-
Saharan Africa. In response, Project YES! placed paid HIV-positive youth peer mentors
(YPM) in four HIV clinics in Ndola, Zambia including a Children’s Hospital (pediatric setting),
an adult Hospital and two primary care facilities (adult settings).
Methods
A randomized controlled trial was conducted from December 2017 to February 2019. Con-
secutively recruited 15 to 24-year-olds were randomly assigned to an intervention arm with
monthly YPM one-on-one and group sessions and optional caregiver support groups, or a
usual care comparison arm. Survey data and blood samples were collected at baseline and
at the six-month midline. Generalized estimating equation models evaluated the effect of
study arm over time on VS, antiretroviral treatment (ART) adherence gap, and internalized
stigma.
Results
Out of 276 randomized youth, 273 were included in the analysis (Intervention n = 137, Com-
parison n = 136). VS significantly improved in both arms (I:63.5% to 73.0%; C:63.7% to
71.3.0%) [OR:1.49, 95% CI:1.08, 2.07]. In a stratified analysis intervention (I:37.5% to
70.5%) versus the comparison (C:60.3% to 59.4%) participants from the pediatric clinic
experienced a relative increase in the odds of VS by a factor of 4.7 [interaction term
OR:4.66, 95% CI:1.84, 11.78]. There was no evidence of a study arm difference in VS
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Citation: Denison JA, Burke VM, Miti S, Nonyane
BAS, Frimpong C, Merrill KG, et al. (2020) Project
YES! Youth Engaging for Success: A randomized
controlled trial assessing the impact of a clinic-
based peer mentoring program on viral
suppression, adherence and internalized stigma
among HIV-positive youth (15-24 years) in Ndola,
Zambia. PLoS ONE 15(4): e0230703. https://doi.
org/10.1371/journal.pone.0230703
Editor: Matt A. Price, International AIDS Vaccine
Initiative, UNITED STATES
Received: October 4, 2019
Accepted: February 21, 2020
Published: April 2, 2020
Copyright: ©2020 Denison et al. This is an open
access article distributed under the terms of the
Creative Commons Attribution License, which
permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Data Availability Statement: Data are available
under Project SOAR’s subsection of the Harvard
Dataverse: https://dataverse.harvard.edu/
dataverse/projectsoar.
Funding: This work was supported by Project
SOAR (Cooperative agreement AID-OAA-140060),
made possible by the generous support of the
American people through the United States
among AYA in adult clinics, or in ART adherence gaps across clinics. Internalized stigma
significantly reduced by a factor of 0.39 [interaction term OR:0.39, 95% CI:0.21,0.73] in the
intervention (50.4% to 25.4%) relative to the comparison arm (45.2% to 39.7%)
Conclusions
Project YES! engaged AYA, improving VS in the pediatric clinic and internalized stigma in
the pediatric and adult clinics. Further research is needed to understand the intersection of
VS and internalized stigma among AYA attending adult HIV clinics.
Trial registration
ClinicalTrials.gov NCT04115813.
Introduction
Adolescents and young adults (AYA) living with HIV access HIV care less and have lower
rates of adherence to antiretroviral therapy (ART) and viral suppression (VS) compared to
adults [1–7]. While there has been a sustained international call to provide support and tools
for HIV self-management behaviors among adolescents as they transition into adulthood [5,8,
9], including adhering to ART, practicing safer-sex behaviors, and transitioning to adult care
[10–14], AYA in sub-Saharan Africa (SSA) do not routinely have access to youth-specific ser-
vices or opportunities to build life skills [5]. To address the unique challenges HIV-positive
AYA face during this distinct developmental stage characterized by physical, social, emotional,
and cognitive development [15] and to maximize resilience among youth, PEPFAR/USAID
guidance on the transition of care for adolescents living with HIV [16] emphasizes several key
issues:
• For some adolescents living with HIV, the transition of care process includes a physical tran-
sition from a pediatric or adolescent model of care to an adult facility;
• Many adolescents living with HIV in SSA already receive care in adult HIV clinics, yet still
need support to develop the skills to self-manage their HIV; and
• The process of transition of care and HIV self-management is complex and a “multifaceted,
active process” that must “attend to the medical, psychosocial, and educational or vocational
needs of adolescents” [17].
Despite our knowledge of the needs of transitioning adolescents drawn from other chronic
illnesses, as well as the impact families and peers have on AYA health [18–20], there is little
published literature on interventions to support HIV-positive youth and their families in SSA
[21]. For example, a 2015 review found only 14 studies on HIV-positive adolescents transition-
ing to adult care, all of which were conducted in the US or UK and the majority of which were
qualitative studies with sample sizes of 50 participants or fewer [22]. A 2016 systematic review
examined the literature to assess the effectiveness of self-management interventions for young
people across chronic illnesses. Out of 42 randomized controlled trials included in the review,
none were conducted in SSA. The authors note that most interventions focused on the medical
aspects of self-management rather than psycho-social issues [23].
To address this gap in evidence-based interventions, this study tested a peer mentoring pro-
gram that drew upon the “Five C’s” of positive youth development: competence, confidence,
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President’s Emergency Plan for AIDS Relief
(PEPFAR) and United States Agency for
International Development (USAID). The contents
of this paper are the sole responsibility of the
authors and do not necessarily reflect the views of
PEPFAR, USAID, or the United States Government.
This research has also been facilitated by the
infrastructure and resources provided by the Johns
Hopkins University Center for AIDS Research, an
NIH funded program (P30AI094189), which is
supported by the following NIH Co-Funding and
Participating Institutes and Centers: NIAID, NCI,
NICHD, NHLBI, NIDA, NIMH, NIA, FIC, NIGMS,
NIDDK, and OAR. The content is solely the
responsibility of the authors and does not
necessarily represent the official views of the NIH.
Competing interests: The authors have declared
that no competing interests exist.
connection, character and caring. Particularly salient principles are confidence, the internal
sense of overall positive self-worth, and connection, the positive bonds youth have with peers,
family, community and institutions [24–26]. The study also drew upon constructs from Social
Cognitive Theory including self-efficacy to perform a behavior, agency to change one’s situa-
tion and observational learning with peer mentors acting as role models [27,28].
Peer mentors, especially those who are well trained and given paid positions, have been
effective in other settings, such as the mothers2mothers program in South Africa which places
mentor mothers in clinics to work with HIV-positive pregnant women to prevent mother-to-
child HIV transmission [29] or the Restless Development program in Zambia that placed
young adults in schools to mentor students on life skills [30]. In addition, our prior research
among 311 HIV-positive adolescents in Ndola, Zambia found that 88% of participants were
interested in having a mentor, such as a young adult living with HIV, with whom to talk [31].
That same study found that 93% of interviewed youth wanted to attend group sessions with
their HIV-positive peers. Peer group interventions have shown some promise in reducing
HIV-related stigma in SSA among HIV-positive adults [32] and supporting ART adherence
among adolescents [33,34].
Drawing on this existing evidence, Project YES! trained and hired youth peer mentors liv-
ing with HIV as paid staff and placed them in four HIV clinics. By having mentors work with
youth individually and in group sessions over time, this research embodies the approach that
healthcare transition is “a continuum and not separate, discrete moves from pediatric to ado-
lescent to adult clinic settings” [35]. We hypothesize that such youth-led strategies are needed
to effectively support AYA to successfully adhere to ART and decrease internalized stigma in
order to achieve viral suppression and the 2030 UNAIDS 95-95-95 goals [36].
Materials and methods
Study design and setting
A randomized controlled trial was conducted among AYA living with HIV attending four
HIV clinics in Ndola, Zambia–one children’s hospital, one adult hospital, and two primary
health care facilities. The two hospitals each had HIV clinics with adolescent focused days and
hours. The two primary care clinics offered HIV services on specific days only. We estimated
that with a sample size calculation of 144 per group, we had 85% power to detect a difference
of 20% (an increase from 50% to 70%) between the proportions VS in the intervention versus
the comparison arms at midline, with Type 1 error of 5% and 20% loss to follow-up.
The trial was registered retrospectively at clinicaltrials.gov (NCT04115813), once authors
became aware of this requirement for publication. The authors confirm that all ongoing and
related trials for this intervention are registered; there are no ongoing trials related to this
study.
Study participants
Study participants were drawn from a population of AYA ages 15–24 attending the four HIV
clinics described above. AYA also had the option of inviting adult caregivers to the program as
well.
Eligibility. Eligible youth were between the ages of 15 to 24 years, aware of their HIV sta-
tus, had been on ART for six or more months, spoke Bemba or English, and planned to be
available to attend study activities over the next 18 months as needed. Exclusion criteria for
youth included being too sick to participate, attending boarding school, having a sibling
already enrolled in the study (one youth per household), or having participated in a prior ado-
lescent/caregiver intervention study held at two of the study sites [31].
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Sampling and recruitment. A systematic sampling approach based on clinic attendance
data from Zambia’s electronic health record system (SmartCare) was initially used by trained
study staff to recruit every other eligible youth, ages 15 to 24, in the children’s hospital and 15
to 19 in the adult clinic settings, while they attended clinic. Due to slow recruitment and the
receipt of revised, decreased SmartCare estimates, the study team amended the protocol to
recruit every eligible youth who attended the clinic as a consecutive sample and increased the
age of participation at all clinics to age 24. If determined to be eligible and interested, trained
interviewers would facilitate the informed consent process, enroll the AYA participant and col-
lect baseline data.
Randomization
After completing the baseline survey, all participants were randomized to either the interven-
tion or the comparison arms. A stratified randomly permuted block randomization (block
sizes 4 and 6) was used to generate the randomization scheme. Randomization was stratified
by sex and age within each of the four clinics for a total of 16 strata. A biostatistician unaffili-
ated with the study generated a random allocation list separately for each stratum using ‘ralloc’
command [37] in STATA statistical software [38]. Pre-labeled, opaque, sealed envelopes ran-
domly sequenced were opened by trained interviewers in the presence of the participants in
numeric order to assign treatment group in a 1:1 allocation ratio. This process resulted in 139
participants assigned to the intervention and 137 assigned to the comparison study arm for
analyses.
Laboratory testing procedures
At baseline, participants also underwent HIV-1 RNA viral load testing using the CobasAmpli-
prep/CobasTaqman 96 machine (Roche Systems, Germany). Blood samples with viral loads of
1,000 copies or more per milliliter (virologic treatment failure) were further subjected to an
HIV drug resistance test using an Applied Biosystems Genetic Analyzer model3500XL (Hita-
chi, Japan) [testing protocols available on dx.doi.org/10.17504/protocols.io.bcc7iszn]. Efforts
were made to contact and switch drugs for all participants who indicated resistance to a drug
in their current ART regimen before the start of the intervention, regardless of study arm
assignment.
Data collection procedures
Recruitment, enrollment and baseline data collection occurred from December 2017 to May
2018. Data, including ART start-date and pre-ART CD4 cell count, were also collected from
participants’ medical charts. A 6-month midline follow-up assessment consisting of a survey
and blood draw was conducted from October 2018 to February 2019. The analyses presented
in this paper are based on the 6-month midline data. After the 6-month midline the study pro-
ceeded with a cross-over design with all participants receiving a form of the intervention, the
results of which will be presented in a separate manuscript.
Project YES! intervention arm. The Project YES! intervention arm consisted of several
components. First, all participants received an orientation meeting with a health care provider
(HCP), their assigned youth peer mentor (YPM), and an adult caregiver (if invited by the
youth participant). During the orientation meeting, the HCP introduced the study participant
to their YPM, reviewed the viral load test result, and shared the Project YES! goal of supporting
the youth to maintain or achieve a suppressed viral load. In the second half of the orientation
meeting, the YPM and youth participant met separately while the HCP met with the caregiver,
if present, to discuss any questions related to Project YES! or the youth’s HIV care. Following
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the orientation meeting, intervention arm participants continued to meet with their assigned
YPM for one-on-one meetings once per month over six months. Participants were also invited
to monthly youth group meetings, the first of which was required in order to encourage those
youth to try a group format. These monthly youth group meetings were facilitated by YPM,
with a HCP invited to attend when clinical or technical information was needed.
Simultaneously, adult caregivers of youth participants were offered a total of three caregiver
group meetings, held every other month. These caregiver group meetings were designed to
provide adults with enhanced knowledge and skills to support their youth living with HIV.
The project also provided Youth and Caregiver Journals that participants could use to track
adherence, engage with educational topics, and reflect on their journeys. These journals drew
upon the USAID-funded AIDSTAR Transition Toolkit and the Positive Connections Youth
Group Manual [16,39]. After the midline data collection, as described above, intervention
arm participants started a maintenance phase.
Youth intervention participants attending the children’s hospital were additionally assessed
for a physical transition to the adult hospital before the start of the intervention. This assess-
ment was based on clinical eligibility (viral load status and opportunistic infections) and psy-
cho-social factors (i.e. does not have a challenge they are facing, such as moving homes or a
recent death in the family). Participants who were eligible to be transferred were then invited
to attend a group transition meeting prior to the start of the intervention to tour the adult
clinic with their HIV-positive peers and familiarize themselves with the new clinic and
assigned YPMs. The study team also planned to have a pediatric clinic staff member attend the
first two clinical visits of the newly transitioned youths to ease the transition process. However,
this program component did not occur systematically for every transitioned youth.
Youth peer mentoring training. YPMs were HIV-positive young adults between the ages
of 21–26 years who had successfully transitioned to self-management. These peer mentors
underwent a capacity-building process. First, they participated in an intensive two-week pre-
service training lead by a Training and Capacity Building Specialist that prepared them to be
skilled, valued, and paid youth mentors and employees of the health care system. The pre-ser-
vice training also included opportunities for the YPM to reflect on their own experiences of liv-
ing with HIV and assess their own self-management and self-care practices. Second, the YPMs
had a month of practice meetings with HIV-positive youth 18 years and older prior to the start
of the intervention. Third, about midway through Project YES!, the YPM underwent an in-ser-
vice training with the same Training and Capacity Building Specialist to reinforce and expand
their skills. Fourth, the YPMs met weekly as a group to discuss challenges, approaches, and
ideas. Fifth, throughout the study, YPMs were able to rely on active supportive supervision
from study team members.
Comparison arm. Participants in the comparison arm received the standard of care for
adolescents and young adults as offered at the HIV clinics, including regular clinic visits and
the option of joining monthly youth group meetings. After the midline data collection, com-
parison arm participants started the Project YES! intervention as described above, including
transitioning eligible youth from the children’s hospital to the HIV clinic in the adult hospital.
Measures
The pre-specified outcomes included viral suppression, ART adherence and internalized stigma.
Viral suppression was defined as a viral load test result of <1,000 copies/mL versus a viral
load test result of 1,000 copies/mL.
ART adherence. An ART adherence treatment gap was assessed at the two time points
through two questions: “In the past three months,did you have a day when you did not take any
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ART drugs?” and “What were the most days in a row that you missed swallowing your drugs in
the past three months?” [40,41]. A binary outcome was generated so that a participant was con-
sidered to not have a treatment gap if they said no to missing any full days of ART drugs in the
past three months, or if they said yes and only missed one day. Otherwise, they were consid-
ered to have an ART adherence treatment gap defined as 48 consecutive hours or more in the
past three months. If the participant was missing answers to both these questions, their ART
adherence treatment gap outcome was considered missing.
Internalized stigma. Internalized stigma was measured at both time points using three
agree/disagree questions from the Internalized AIDS Stigma Scale (IA-RSS) [42], that have
been used in a previous study among a population of HIV-positive adolescents in Ndola, Zam-
bia [41]. This measure asks participants to either “agree” or “disagree” with each of the follow-
ing three statements: (1) You feel guilty that you are HIV positive; (2) You are ashamed that you
are HIV positive; and (3) You sometimes feel worthless because you are HIV positive. From this
data, a binary outcome was generated with “1” indicating that the participant answered
“agree” to at least two of the three questions, and “0” otherwise [41]. If answers to all three
were missing, this outcome was considered missing.
Independent variables adjusted for in the analyses included sex (male vs. female), age (cate-
gorized as 15–19 versus 20–24) and enrollment site (the clinic where the AYA was recruited
and enrolled). In addition, we also assessed intervention exposure as defined by the number of
one-on-one peer mentoring sessions and the number of group sessions each youth attended,
as well as if the youth had a caregiver attend any of the Project YES! caregiver sessions. Finally
we assessed potential contamination by asking the following questions at the 6-month midline
assessment of the intervention arm participants: “Have you shared anything you learned or
talked to your YPM about with other patients at the clinic who are part of Project YES!, but
who are in the other group who will start meeting the peer mentor second”. We also asked the
comparison arm participants “has anyone from the group who has been meeting with a youth
peer mentor first shared anything they learned or talked about with a peer mentor with you?”
Participants who responded yes to these questions were then read a list of Project YES! inter-
vention topics to see if program content was discussed.
Statistical analysis
This paper presents the primary analysis comparing the intervention versus comparison arms
using baseline and 6-month midline data We summarized baseline socio-demographic and
clinical characteristics of the study sample using counts and percentages for categorical vari-
ables and means and standard deviations for continuous variables. The pre-determined out-
comes for the primary analysis comparing the interventions versus the comparison arms over
time (baseline versus midline) were VS (<1,000 copies/mL), ART adherence treatment gap,
and internalized stigma among youth participants.
Viral suppression. We fitted generalized estimating equation (GEE) models with a logit
link and an unstructured correlation structure to account for the correlation among individu-
als’ measurements. As a robustness check, we also fitted a GEE model weighted by the inverse
probability of truncation, which does not assume that the losses of participants by midline
were completely at random. The primary analysis model included study arm as the main expo-
sure of interest and adjusted for time point (midline versus baseline), time point by arm inter-
action, and the variables used for stratification in the randomization: sex, age and enrollment
site. We evaluated the potential mediation effect of the length of time between baseline and
midline measurement using a generalized structural equation model, with VLS at midline as
the outcome, adjusting for age, sex and enrollment site. A stratified analysis by pediatric versus
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adult HIV treatment sites, which had been specified a priori, was also conducted using a GEE
model.
ART adherence. We generated proportions of participants with a gap at both time points
(baseline and the 6-month midline) by study arm. We then fitted a GEE model to evaluate the
effect of study arm on having an ART adherence treatment gap, adjusting for time and stratifi-
cation variables.
Internalized stigma. We calculated a Cronbach’s alpha to evaluate internal consistency
among the three internalized stigma questions. A GEE model was fitted to evaluate the effect
of the intervention on internalized stigma.
Exposure. We conducted Chi-squared tests for the null hypotheses that attending at least
five out of six group meetings or having a caregiver attend any of the meetings was associated
with VS at midline.
Ethical considerations
This study was reviewed and approved by the ERES Converge Institutional Review Board in
Zambia, the Zambia Ministry of Health through the National Health Research Authority, and
the Johns Hopkins Bloomberg School of Public Health Institutional Review Board in the
United States. Participants were reimbursed 50 Kwacha (about 5.00 USD) for their time and
travel to the clinic for study-related appointments. In addition, intervention participants were
provided snacks during monthly group meetings.
In accordance with Zambian law, participants 15 to 17 years old provided written assent
and their parent/guardian provided parental permission [43]. Trained interviewers adminis-
tered tablet-based baseline surveys using Magpi software that included questions about various
background characteristics and HIV-related health outcomes as well as experiences of violence
and suicide ideation. The interviewers referred participants who reported severe violence or
thoughts of suicide in the past week to HCPs for additional care.
Results
During recruitment, the research assistants approached 373 youth the HCPs confirmed were
aware of their HIV status, of whom 74% (n = 276) enrolled into the study (Fig 1). Out of the 97
who did not enroll, 34 were not eligible, 39 requested to join later and then were not reach-
able/never returned, 16 did not obtain parental permission, and 7 declined for various reasons
including not being interested or not having travel money.
During data cleaning it was determined that three enrolled participants had been on ART
for less than six months. These three participants were subsequently excluded from analyses
for not meeting the eligibility criteria, bringing the analysis sample to 273. At baseline, the 137
participants randomly assigned to the intervention arm and the 136 to the comparison arm
were balanced with respect to key demographic and clinical characteristics (Table 1). The aver-
age age was 19 years (range 15–24) and 162 (59.3%) were female. The majority, 240 (87.9%)
had completed at least primary school. Most (n = 198, 72.5%) self-reported having acquired
HIV perinatally. The median CD4 count prior to ART initiation was 284 (IQR 154, 453)
among the 187 participants with available pre-ART CD4 cell count data and the median num-
ber of years on ART was 7.3 (IQR 3.5, 9.9). Within each study arm, the time between baseline
and midline viral load (VL) measurements varied substantially among participants, with an
overall median of 38.3 weeks (IQR 31.0, 42.4). As part of the intervention, 23 participants with
VS and no known psycho-social issues consented and moved from the children’s hospital to
the adult hospital clinic.
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At midline 92% of participants allocated to the Intervention group (n = 126) and 85% of the
Comparison group (n = 115) completed a survey and blood draw. Results from the primary
analyses on VS, ART adherence treatment gap, and internalized stigma are presented below.
No known unintended harmful effects of the intervention were found.
Viral suppression
Fig 2 shows the counts and percentages of participants with VS at baseline and midline by study
arm. At midline, 20 participants in the comparison arm and 11 in the intervention arm were lost
to follow-up (two youth from each study arm died before starting intervention activities, none of
whom were suppressed at baseline). VS was similar in both arms and increased from baseline val-
ues of 63.7% and 63.5% in the comparison and intervention arms respectively, to 71.3% and 73.0%
at midline. The results of the GEE model confirmed that the odds of VS was similar between arms
[Odds ratio (OR):1.03, 95% Confidence Interval (CI):0.68, 1.57]. The GEE model also showed a
Fig 1. Consort diagram.
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significant increase in VS between baseline and midline in both arms [OR: 1.49, 95% CI:1.08,
2.07], and no evidence of an interaction between study arm and time. As such, the final primary
model for this analysis did not include the interaction term. The inverse probability weighted esti-
mate had similar results: The odds of VS was similar between arms [OR 1.02, 95% CI: 0.66, 1.55],
and there was a significant increase in VS between baseline and midline in both arms [OR 1.52,
95% CI: 1.09, 2.10], and no evidence of an interaction between study arm and time.
The results also show that there was no evidence of a mediation effect of the length of time
between baseline and midline VL measurements [indirect effect: -.034, 95% CI: -0.12, 0.05]
and there was no significant partial effect of study arm on the time between baseline and mid-
line [partial effect: -.2,8 95% CI: -0.68, 0.11]
Table 1. Baseline socio-demographics and clinical characteristics of youth participants.
Intervention (%) Comparison (%) Total (%)
Participants 137 (50.18) 136 (49.82) 273 (100.00)
Mean age in years (range) 19.12 (15–24) 19.10 (15–24) 19.11 (15–24)
Age
15–19 years old 87 (63.50) 87 (63.97) 174 (63.74)
20–24 years old 50 (36.50) 49 (36.03) 99 (36.26)
Sex
Female 82 (59.85) 80 (58.82) 162 (59.34)
Male 55 (40.15) 56 (41.18) 111 (40.66)
Primary School
Did not complete primary school 20 (14.60) 11 (8.09) 31 (11.36)
Completed primary school 117 (85.40) 123 (90.44) 240 (87.91)
Missing - 2 (1.47) 2 (0.73)
How acquired HIV
From parents 97 (70.80) 101 (74.26) 198 (72.53)
Through sex 11 (8.03) 16 (11.76) 27 (9.89)
Another way 10 (7.30) 4 (2.94) 14 (5.13)
Don’t know 18 (13.14) 14 (10.29) 32 (11.72)
Missing 1 (0.73) 1 (0.74) 2 (0.73)
Baseline VL suppression
(<1000 copies/ml) 87 (63.50) 86 (63.24) 173 (63.37)
Missing - 1 (0.74) 1 (0.37)
Pre-ART CD4 count
median (25
th
, 75
th
) 285.5 (158–452) 280 (149–487) 284 (154–453)
0–349 61 (44.53) 57 (41.91) 118 (43.22)
350–499 12 (8.76) 14 (10.29) 26 (9.52)
500+ 21 (15.33) 22 (16.18) 43 (15.75)
Missing 43 (31.39) 43 (31.62) 86 (31.50)
Years on ART
median (25
th
, 75
th
) 7.19 (3.34–9.80) 7.45 (4.16–10.05) 7.28 (3.49–9.91)
<3 years 32 (23.36) 27 (19.85) 59 (21.61)
3–6 years 21 (15.33) 24 (17.65) 45 (16.48)
6+ years 83 (60.58) 83 (61.03) 166 (60.81)
Missing 1 (0.73) 2 (1.47) 3 (1.10)
Weeks between baseline & midline
median (25
th
, 75
th
) 37.57 (30.00–41 71) 39.00 (32.71–43.43) 38.29 (31.00–42.43)
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Viral suppression analysis stratified by treatment site type (pediatric versus
adult)
Figs 3and 4show VS at baseline and midline by study arm and by the type of site (pediatric or
adult) where the participant received the intervention. In the children’s hospital, VS at baseline
was 60.3% and 37.5% for the comparison and intervention arms respectively. The comparison
arm did not show a change by midline (59.4% suppressed) while the intervention arm
improved to 70.5%. The GEE model for the pediatric site confirmed that at baseline, the inter-
vention arm had a significantly lower level of suppression than the comparison arm [OR:0.36,
95% CI:0.17,0.79]. Among comparison arm participants, the odds of VS did not increase
at midline relative to baseline [OR:0.91, 95% CI:0.52,1.62]. There was a significant arm by
time interaction with the intervention arm participants experiencing a relative increase in the
odds of VS by a factor of 4.7 relative to comparison arm [interaction term OR:4.66, 95%
CI:1.84,11.78].
In the adult clinic settings, VS at baseline was 67.7% and 77.5% for the comparison and
intervention arms, respectively. The comparison arm improved to 86.3% suppressed by mid-
line while the intervention arm changed slightly to 74.4%. The GEE model for the adult sites
showed that among the comparison arm participants, time had a significant effect so that the
odds of VS at midline were three times higher than at baseline [OR:2.99, 95% CI:1.27,7.04].
Furthermore, among the intervention arm participants, there was a significant relative reduc-
tion in the odds of VS by midline compared to the comparison arm participants [interaction
OR:0.27, 95% CI:0.10, 0.79].
Fig 2. Viral suppression at baseline and midline by study arm.
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ART adherence
Fig 5 shows that among the comparison arm participants 44 (32.6%) at baseline, and 39
(33.9%) at midline, reported an ART adherence treatment gap of 48 consecutive hours or
more in the past three months. Among the intervention participants, 62 (45.3%) at baseline,
and 43 (34.4%), at midline reported an ART adherence treatment gap. The GEE model indi-
cates that the intervention had significantly higher odds of treatment gap than the comparison
arm at baseline [OR:1.74, 95% CI:1.06, 2.86]. Having a treatment gap did not change for the
comparison group between baseline and midline [OR:1.05, 95% CI: 0.68, 1.61], but there was a
notable relative change for the participants in the intervention arm [OR interaction term: 0.63,
95% CI: 0.35, 1.13]
Internalized stigma: Feelings of guilt, shame, worthlessness
The Cronbach’s alpha for the three items of internalized stigma was 0.74 at baseline and 0.73
at midline. Fig 6 shows that in the comparison arm, 61 (45.2%) participants at baseline and 46
(39.7%) participants at midline reported at least two of these feelings. In the intervention arm,
these feelings were prevalent among 69 (50.4%) participants at baseline which was reduced to
32 (25.4%) at midline, suggesting a potential time by arm interaction term. The GEE model
shows that there was no statistically significant difference between baseline and midline
among comparison participants [OR:0.83, 95% CI:0.54,1.29], but there was evidence of an
interaction so that for intervention arm participants, the odds of having these feelings were sig-
nificantly reduced by a factor of 0.39 relative to the reduction in the comparison arm [interac-
tion terms OR:0.39, 95% CI :0.21,0.7].
Fig 3. Viral suppression at baseline and midline: Pediatric clinic only.
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Exposure. Among the 126 intervention arm participants with a midline viral load test,
120 (95%) attended an orientation meeting, and the majority (93 [73.8%]) attended five or
six one-on-one meetings with a YPM (Table 2). Given a lack of variability in attendance and
the small numbers when stratified by VS, a further analysis to explore the potential relation-
ship between VS and Project YES! exposure to one-on-one meetings was not conducted.
Almost half (57 [45.2%]) of the participants attended five or six group meetings. There was
no significant association between attending at least five youth group meetings and VS at
midline (Chi-squared p-value = 0.66). In terms of caregiver support, 59 (47%) of youth had
at least one caregiver who attended one Project YES! session. There was no significant asso-
ciation between having a caregiver attend at least one of the meetings and VS at midline
(Chi-squared p-value = 0.14). We evaluated baseline characteristics to see if they were asso-
ciated with caregiver attendance and found that younger participants (15–19 years old)
were more likely to have a caregiver attend versus the older (20–24 years old) participants
(51.7% vs 28% p-value = 0.007). There was no evidence of an association with sex nor inter-
vention site.
We also assessed potential contamination between the two study arms. Overall, across all
the clinics, less than 5% (N = 12, 4.96%) of participants at the 6-month midline reported they
had talked with youth in the other arm about session content (5 intervention group partici-
pants and 7 comparison group participants). The topics most frequently discussed across both
study arms were “adherence or taking your ART drugs” (N = 9, 3.72%) followed by “Taking
care of your own health [self-management]” (n = 7, 2.89%) and “viral load test results and how
to suppress HIV in the blood” (n = 7, 2.89%).
Fig 4. Viral suppression at baseline and midline: Adult clinics only.
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Fig 5. ART Adherence Treatment Gap (48 hour or more in the past 3 months) at baseline and midline by study
arm.
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Fig 6. Self-Stigma at baseline and midline by study arm.
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Discussion
YPMs, when well trained and paid, are a feasible and effective way to reduce internalized
stigma and achieve VS among AYA living with HIV. Through a process of capacity building,
these young people, most of whom had never held formal employment before, were able to
gain the skills and self-confidence to share their experiences to mentor AYA and to become
valued and skilled clinic employees.
In this context, mentoring is substantially different from being a peer educator. While pro-
viding accurate information as a trustworthy peer source is a critical component of both edu-
cating and mentoring, mentoring also encompasses active role-modeling, listening, and
problem-solving based on the shared experience of living with HIV. It is this shared experience
coupled with a clear understanding of boundaries that allowed the Project YES! YPMs to serve
as empowered role models, demonstrating the behaviors of positive living and HIV self-man-
agement. Boundaries were particularly important because the YPMs were not trained to be
counselors or to attempt to resolve certain complex issues AYA may face, such as experiences
of violence and/or suicide ideation. Knowing one’s role, boundaries, and when to refer AYA
clients to clinical staff were important aspects of the YPM capacity-building process. Overall,
the YPMs took ownership of and shaped program delivery, becoming the experts. This
approach complements and builds upon existing support in Zambia for adolescent engage-
ment in HIV care as illustrated by the Ministry of Health’s Facilitator’s Guide for Adolescent
Peer Educators [44]. The Project YES! youth-driven process was also well received, as indi-
cated by the high uptake of the one-on-one meetings and represents an important approach to
addressing the needs of AYA living with HIV.
A main finding of Project YES! was the significant decrease in internalized stigma experi-
enced by intervention arm participants across all study sites. AYA are in a developmental stage
when they are “developing and consolidating their sense of self” [45], and the impact of inter-
nalized stigma among this age group is not well studied [46]. In a systematic review of stigma-
reduction interventions in low- and middle-income countries, the authors found only one
study that focused on youth [46,47]. This study used motivational interviewing to change sex-
ual risk behaviors and alcohol use among Thai youth and did not find evidence of an impact
on internalized stigma. Project YES! addresses this distinct gap in knowledge by providing crit-
ical intervention data on how to reduce internalized stigma. These results further support a
Table 2. Exposure to the Project YES! and viral load suppression at follow-up among intervention arm participants (n = 126).
VL Suppression (%) Non-VL suppression (%) Total
Orientation mtg
Yes 87 (94.6%) 33 (97.1%) 120 (95.2%)
No 5 (5.4%) 1 (2.9%) 6 (4.8%)
One-on-one YPM mtgs
0–4 25 (27.2%) 8 (23.5%) 33 (26.1%)
5–6 67 (72.8%) 26 (76.5%) 93 (73.8%)
Group YPM mtgs
0–4 54 (58.7%) 15 (44.1%) 69 (54.8%)
5–6 38 (41.3%) 19 (55.9%) 57 (45.2%)
Any caregiver engagement
Yes 42 (45.7%) 17 (50.0%) 59 (46.8%)
No 50 (54.3%) 17 (50.0%) 67 (53.2%)
11 lost to follow-up in the Intervention Arm
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growing body of literature on the relationship between internalized stigma, identity, develop-
mental stage and chronic illness outcomes among AYA [48–50].
Another key finding was the relative increase of 4.7 in VS among AYA intervention versus
comparison participants in the pediatric clinic at the children’s hospital. This finding provides
important evidence on the impact YPMs have when working in collaboration with AYA cli-
ents, clinic staff and caregivers. Evidence of this effect, however, was not found in the adult set-
ting. In the adult setting, the intervention arm had significantly greater VS at baseline than the
comparison arm, possibly due in part to the fact that 23 virally suppressed participants from
the children’s hospital clinic were transitioned to the adult hospital before the start of study
activities as part of the intervention and included in the adult clinic population for analysis.
This higher level of VS at baseline meant less opportunity for change over time for participants
in adult clinics. In addition, the adult setting comparison arm had twice the loss to follow-up
as the adult setting intervention arm, while the loss to follow-up was minimal in both study
arms in the pediatric setting. These research findings and biases reinforce the need to further
study AYA experiences in adult HIV clinic settings and to assess if reductions in internalized
stigma lead to increased VS over time. The large increase in VS found among AYA in the pedi-
atric clinic, however, is clear and this is one of the only studies that provides concrete evidence
of program impact on increasing VS in this age group. The fact that the intervention arm par-
ticipants in the pediatric clinic had higher levels of viral failure at baseline (given the transition
of those with viral suppression to adult settings) indicates the potential role Project YES! may
have in the provision of differentiated care focusing on AYA who are experiencing challenges
with their viral status. These findings have direct implications for programing and the need to
incorporate peer mentors into HIV clinic services in pediatric settings.
While the study did not find a significant relative reduction in ART adherence treatment
gaps among intervention versus comparison participants, we did see an overall decrease in
ART adherence treatment gaps from 45.3% to 34.4% in the intervention arm. A limitation of
this study is the adherence measures were self-reported and may reflect social desirability bias.
Newer technologies, like point of care (POC) urine test to measure adherence to Tenofovir-
based regimens [51–53], will help to evaluate how programs can improve ART adherence in
future studies.
Other limitations to consider include the individual randomization within clinics that may
have resulted in the comparison arm participants experiencing changes in usual care given
that several clinic staff, during in-depth interviews, reported that participating in Project YES!
changed the way they see and interact with all of their AYA patients [54]. Such changes may
have influenced HIV outcomes among comparison arm participants as they were attended to
by the same HCP as the intervention participants [55]. Purposive sampling of study sites and
consecutive sampling of study participants may also introduce selection bias and limit gener-
alizability of the study findings.
Overall, the Project YES! results establish YPMs as a valuable, underutilized resource to
support AYA living with HIV in an overburdened health care system. Peer mentoring
approaches have worked with other populations [29,30], and contributes to Zambia’s commit-
ment to AYA engagement [44] by training youth to serve not only as peer educators but also
as mentors and role models for their HIV-positive peers. Future research will focus on issues
of scale-up of YPM integration into clinical care using implementation science strategies.
Conclusions
Project YES! provides a feasible and effective clinic-based approach to engage AYA and
improve their HIV-related outcomes. The key intervention component was implemented and
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led by well-trained and paid youth, exemplifying how a virtually untapped resource in the HIV
epidemic–young people–can successfully engage and shape HIV outcomes among AYA.
Supporting information
S1 Checklist. CONSORT 2010 checklist of information to include when reporting a rando-
mised trial.
(DOC)
S1 Research Plan.
(PDF)
Acknowledgments
The team acknowledges with deep gratitude the adolescent and young adult clients who
engaged in this study. Their resilience remains inspiring. We also thank the heart and soul of
Project YES! the dynamic and amazing youth peer mentors who shared their time and their
experiences with us and made Project YES! a success. We also thank Ms. Teresa Peterson, the
Training and Capacity Building Specialist, for her time and amazing ability to see each per-
son’s potential and to provide the space, tools, and guidance for these young people to become
youth peer mentors. Without the support and guidance of the health care providers and study
team members, this study would not have been possible. We also wish to acknowledge the spe-
cial role of the research advisory board, chaired by Dr. Sam Phiri, that helped keep the study
accountable to the priorities and needs of youth in Zambia.
Author Contributions
Conceptualization: Julie A. Denison.
Data curation: Virginia M. Burke, Christiana Frimpong, Elizabeth A. Abrams.
Formal analysis: Virginia M. Burke, Bareng A. S. Nonyane.
Funding acquisition: Julie A. Denison.
Writing – original draft: Julie A. Denison, Bareng A. S. Nonyane.
Writing – review & editing: Julie A. Denison, Virginia M. Burke, Sam Miti, Bareng A. S. Non-
yane, Christiana Frimpong, Katherine G. Merrill, Elizabeth A. Abrams, Jonathan K.
Mwansa.
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PLOS ONE
Peer mentoring impact on viral suppression, adherence and stigma among HIV-positive Zambian youth
PLOS ONE | https://doi.org/10.1371/journal.pone.0230703 April 2, 2020 19 / 19
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