Access to this full-text is provided by PLOS.
Content available from PLOS One
This content is subject to copyright.
RESEARCH ARTICLE
“Project YES! has given me a task to reach
undetectable”: Qualitative findings from a
peer mentoring program for youth living with
HIV in Zambia
Katherine G. MerrillID
1¤
*, Christiana Frimpong
2
, Virginia M. Burke
1
, Elizabeth A. Abrams
1
,
Sam Miti
2
, Jonathan K. Mwansa
2
, Julie A. Denison
1
1Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore,
Maryland, United States of America, 2Arthur Davison Children’s Hospital, Ndola, Zambia
¤Current address: Center for Dissemination and Implementation Science, Department of Medicine,
University of Illinois at Chicago, Chicago, Illinois, United States of America
*kgm@uic.edu
Abstract
The Project YES! clinic-based peer mentoring program was a randomized controlled trial
(RCT) conducted among 276 youth from four HIV clinics to test the impact of the program
on promoting HIV self-management and reducing internalized stigma among youth living
with HIV (ages 15–24 years) in Ndola, Zambia. We conducted a qualitative sub-study involv-
ing in-depth interviews with 40 intervention youth participants (21 female, 19 male) to
explore their experiences with Project YES! which included: an orientation meeting led by a
healthcare provider, monthly individual and group counseling sessions over six months, and
three optional caregiver group sessions. Using baseline RCT data, we used maximum varia-
tion sampling to purposively select youth by sex, age, change in virologic results between
baseline and midline, and study clinic. A four-person team conducted thematic coding.
Youth described their increased motivation to take their HIV care seriously due to Project
YES!, citing examples of improvements in ART adherence and for some, virologic results.
Many cited changes in behavior in the context of greater feelings of self-worth and accep-
tance of their HIV status, resulting in less shame and fear associated with living with HIV.
Youth also attributed Project YES! with reducing their sense of isolation and described Proj-
ect YES! youth peer mentors and peers as their community and “family.” Findings highlight
that self-worth and personal connections play a critical role in improving youths’ HIV out-
comes. Peer-led programs can help foster these gains through a combination of individual
and group counseling sessions. Greater attention to the context in which youth manage
their HIV, beyond medication intake, is needed to reach global HIV targets.
Introduction
While progress has been made in the past decade in reducing the number of new HIV infec-
tions among young people (aged 15–24 years), this age group still accounted for two out of
PLOS ONE
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 1 / 13
a1111111111
a1111111111
a1111111111
a1111111111
a1111111111
OPEN ACCESS
Citation: Merrill KG, Frimpong C, Burke VM,
Abrams EA, Miti S, Mwansa JK, et al. (2023)
“Project YES! has given me a task to reach
undetectable”: Qualitative findings from a peer
mentoring program for youth living with HIV in
Zambia. PLoS ONE 18(10): e0292719. https://doi.
org/10.1371/journal.pone.0292719
Editor: Nabeel Al-Yateem, University of Sharjah,
UNITED ARAB EMIRATES
Received: September 20, 2022
Accepted: September 27, 2023
Published: October 13, 2023
Copyright: ©2023 Merrill 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: Funding was provided by Project SOAR, a
six-year cooperative agreement funded by the U.S.
President’s Emergency Plan for AIDS Relief
(PEPFAR) and the U.S. Agency for International
Development (USAID, Agreement No. AID-OAA-A-
14-00060) and the Johns Hopkins Center for AIDS
every seven new HIV infections in 2019 [1]. Compared to other age groups, youth living with
HIV in sub-Saharan Africa, home to 88% of youth living with HIV worldwide [2], experience
more incomplete antiretroviral therapy (ART) treatment and virologic failure [3,4]. All ado-
lescents and young adults are in a unique period of tremendous emotional, social, cognitive,
and psychological change [5,6], but those living with HIV face added pressures of coming to
terms with their HIV status and building their sense of identity [7], which can exacerbate the
barriers they face with their HIV care and treatment. Indeed, numerous factors have been
associated with incomplete ART adherence and/or virologic failure among youth in the region,
including stigma, treatment fatigue, non-disclosure to family members, and a lack of caregiver
assistance or people to talk with about living with HIV after disclosure [8–10].
Despite increasing recognition of the need to focus on the HIV epidemic among young
people to reach global HIV targets [11,12], systematic reviews have found few high-quality
intervention studies which address youths’ HIV care and treatment outcomes [13–15]. To
help fill this gap, our team developed and tested through a randomized controlled trial (RCT)
Project YES! Youth Engaging for Success for adolescents and young adults (AYA) living with
HIV in Zambia (NCRT #04115813; Clinicaltrials.gov identifier: NCT04115813) [16]. Zambia
has among the highest HIV prevalence rates globally (11.1% among people 15–59 years) [17],
and in 2016 only about one-third of Zambian youth aged 15–24 years had achieved viral sup-
pression compared to nearly three-quarters of adults [18]. Project YES! trained and paid
young adults living with HIV to work in clinics as peer mentors to facilitate youths’ HIV self-
management [19]. While evidence for the use of peer interventions among people living with
HIV broadly is mixed [20], studies have shown promising findings among youth living with
HIV in sub-Saharan Africa [21,22].
The Project YES! RCT found that the relative odds of experiencing feelings of internalized
stigma—measured via three items: 1) you feel guilty that you are HIV positive; 2) you feel
ashamed that you are HIV positive; and 3) you sometimes feel worthless because you are HIV
positive—were significantly lower among Project YES! intervention versus comparison group
participants (OR: 0.39, 95% CI: 0.21–0.73). Moreover, a sub-group of Project YES! participants
in the pediatric setting had a relative increase of 4.7 in the odds of viral suppression (95% CI:
1.84–11.78) compared to comparison group participants [16]. This study reports on qualitative
data collected from youth participants in the Project YES! RCT. We explored youths’ experi-
ences with Project YES! to strengthen our understanding of the intervention’s effectiveness
and implementation, while enhancing the literature on peer-centered approaches to improv-
ing HIV outcomes among youth living with HIV.
Materials and methods
Overview of Project YES!
The Project YES! RCT consecutively enrolled 276 youth living with HIV from four HIV clinics
—a children’s hospital, an adult hospital, and two primary health facilities—in Ndola, Zambia
(full study details elsewhere [23]). Youth were eligible if aged 15–24 years, an English or
Bemba speaker, aware of their HIV status, on ART for 6+ months, and available for the
18-month study. Participants randomized to the intervention arm received a six-month peer-
mentoring program, which included an orientation meeting (with optional caregiver partici-
pation), and monthly individual and monthly group meetings with a youth peer mentor
(YPM). Caregivers, if invited by the youth, could attend three caregiver group meetings
(Fig 1). The intervention draws on the Five Cs of positive youth development, including com-
petence, confidence, connection, character, and caring [24]. It also draws on elements of Social
Cognitive Theory, including agency to perform a behavior through essential knowledge and
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 2 / 13
Research (P30AI094189). The content is solely the
responsibility of the authors and does not
necessarily represent the official views of PEPFAR,
USAID, or the National Institutes of Health. The
funders had no role in study design, data collection
and analysis, decision to publish, or preparation of
the manuscript.
Competing interests: The authors have declared
that no competing interests exist.
skills, observational learning through modeling of behaviors by peer mentors, and self-efficacy
to perform a behavior through increased confidence [25,26].
YPM, aged 21–26 years, who were identified by healthcare providers (HCP) in the four
study clinics as successfully managing their HIV, completed a two-week training and were
hired by Project YES! to work in the clinics. They underwent one month of practice meetings
with youth before the intervention’s launch. HCP led the orientation meeting and caregiver
meetings and were available to answer youths’ questions if outside the scope of YPM knowl-
edge. Prior to the intervention, youth attending the children’s hospital were assessed for a pos-
sible physical transition to an adult hospital. Those with viral load failure at baseline were
assessed for drug resistance and recommended an ART medication change if needed [27].
Assessments, including surveys and blood draws for virologic testing, were conducted at base-
line, ~6 months, and ~12 months. While the intervention arm received the intervention, the
comparison arm received usual care. After six months, the intervention arm entered a six-
month maintenance period consisting of individual or group meetings every other month,
and the comparison arm received the intervention. After another six months, once the com-
parison arm had received the intervention, Project YES! activities ended, and participants
completed the endline assessment. Alongside the RCT, qualitative data were collected from
youth participants, in addition to YPM, HCP, and caregivers of youth participants (findings
from YPM and HCP are presented elsewhere [19,28]), to explore experiences with the Project
YES! intervention.
Qualitative data collection and analysis
Forty youth (21 female, 19 male) randomized to the Project YES! intervention arm partici-
pated in one-time semi-structured in-depth interviews (IDI) about their experiences with the
Fig 1. Overview of Project YES! intervention. The intervention was delivered to the study intervention arm for the first six months
and to the comparison arm for the following six months while the intervention arm completed a maintenance period.
https://doi.org/10.1371/journal.pone.0292719.g001
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 3 / 13
program. Interviews were chosen for data collection given their usefulness for exploring sensi-
tive topics (e.g., HIV stigma, ART adherence, etc.), where participants may not wish to discuss
such issues in a group environment [29]. Maximum variation sampling was used to achieve
heterogeneity in views about the program. Accordingly, youth were purposively selected to
ensure balanced representation from across the following characteristics, determined from
their reports on the baseline questionnaire: sex, age group (15–19 or 20–24 years), change in
virologic results between baseline and midline (~six months post), and study clinic. Three
Zambian interviewers who had previous research experience with young people and were
unaffiliated with the Project YES! programs team conducted the IDI following five days of
study-specific training. Interviewers were matched with participants by sex. IDI were con-
ducted in English or Bemba (based on youth preference) in a private space at the clinics. They
lasted 30–75 minutes and were audio-recorded with youth’s permission and transcribed in
English by a Lusaka-based transcription company. Transcripts were reviewed by the interview-
ers to confirm their accuracy. IDI were held from January to March 2019, after the completion
of the six-month intervention and midline RCT data collection during the intervention arm’s
maintenance period.
The IDI guide asked about youth’s experiences with the program generally and with the
individual and group meetings, specifically. It probed into any changes resulting from the pro-
gram, perspectives of caregiver involvement, experiences with HIV self-management, HCP
interactions, and program recommendations (sample interview questions are in Table 1). Two
topics in the guide—experiences with a drug change (if applicable) and with the study’s safety
protocol [30]—are the focus of other analyses.
Transcripts were thematically coded by a trained four-person team. We used deductive and
inductive approaches by creating a codebook based on the IDI guide and adding codes itera-
tively [31]. We drew on Tobin and Begley’s criteria for ensuring qualitative rigor [32]. The
coding team and principal investigator (JD) met regularly to develop a common understand-
ing of the codes and their application and to discuss emerging patterns. These meetings were
used to achieve credibility—i.e., ensuring that the researchers’ representation of the themes fit
with the respondents’ views expressed during the interviews—and confirmability—i.e., that the
interpretations were clearly derived from the data [32]. Memoing was used to consolidate
emerging themes and as a reflexivity tool, whereby the researchers kept a “self-critical” account
of the research process and reflected on potential biases vis-à-vis the research topic to enhance
Table 1. Sample interview questions for youth participants by domain of interest.
Domain Sample interview question
Overall experiences in program Tell me about your experience in the Project YES! peer mentoring program.
What did you like and dislike about the program?
One-on-one and group
meetings
What do you prefer: the one-on-one sessions, the group sessions, or both? Please
explain.
How things changed or stayed
the same
How has the project affected your health? What changed or stayed the same about
how you care for your health and HIV after talking with your peer mentor?
Caregiver involvement Tell me about a time you discussed Project YES! with your caregiver. How did
your caregiver feel about your participation in Project YES!?
HIV self-management Tell me about the last time you missed taking your HIV medication. What
happened?
Healthcare provider
interactions
How do you feel about your interactions with health care providers at your clinic?
How comfortable do you feel asking questions during your visit if you want
something to be clearer?
Program recommendations Would you want this program to continue or stop? Why or why not?
https://doi.org/10.1371/journal.pone.0292719.t001
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 4 / 13
the dependability of findings [32]. Findings were compared with those derived from in-depth
interviews with YPM and HCP to achieve completeness in recognizing the full complexity of
an exploration of experiences in the Project YES! intervention [32]. NVivo 14 facilitated the
coding and organization of findings.
Ethics
Participants provided written informed consent to enroll in the RCT, including to participate
in an IDI. Written parental consent and youth assent were obtained for 15-17-year olds [33].
At the beginning of the IDI, interviewers read a script to remind participants of key ethical
issues and asked participants to verbally agree to proceed. Interviewers were trained to bring
IDI participants who described severe experiences of violence (e.g., forced sex, physical beat-
ing) or suicidal ideation to HCP at the clinic according to the study’s safety protocol. The pro-
viders handled these cases according to clinical practice, local policy, and Zambian law, and
provided onward referrals as needed [30]. Participants were reimbursed 50 Kwacha (roughly
$5.00 USD) for their time and transportation to the clinic. This research was approved by the
ethics review boards at ERES Converge in Zambia (2017-Sept-012) and the Johns Hopkins
Bloomberg School of Public Health in the United States (00007870), and the Zambia Ministry
of Health through the National Health Research Authority.
Results
The predominant themes emerging across the IDI concerned youths’: a) increased motivation
for HIV care, b) reduced feelings of shame and fear and enhanced self-worth, and c) greater
sense of community, which they attributed to the Project YES! intervention. Respondent char-
acteristics are in Table 2. Findings did not differ based on the youths’ sex, age, change in viral
load status during the project, or study clinic.
Table 2. Interview respondent characteristics according to sampling criteria.
Sampling characteristic n (%)
Sex
Female 21 (53%)
Male 19 (47%)
Age group
15–19 years 24 (60%)
20–24 years 16 (40%)
Change in viral load from baseline to midline (~6 months later)
Failure to suppression 10 (25%)
Suppression to suppression 16 (40%)
Suppression to failure 7 (18%)
Failure to failure 6 (15%)
Missing 1 (3%)
Study clinic
Child hospital 14 (35%)
Adult clinic 15 (38%)
Transitioned*11 (27%)
*From children’s hospital to adult hospital.
https://doi.org/10.1371/journal.pone.0292719.t002
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 5 / 13
“A task to reach undetectable”: Gaining the motivation to take their HIV
care seriously
As the most salient theme, youth described how Project YES! had inspired them to be mindful
of their HIV care. Most described taking their medication inconsistently before the project—
they were “not paying attention” and “didn’t really care”—but many described improvements
through the project. As a 16-year-old male participant explained, “I am concerned about my
health. . .When I get home, I no longer forget [to take my medication]. I manage everything.”
Among the subset sampled whose viral load went from failure to suppression, most gave exam-
ples of how their viral load had gone down since participating in Project YES!, which had
encouraged them to remain diligent with their ART. “Project YES! has. . .given me a task to
reach undetectable,” said a 21-year-old male participant. A few youth explained that their fam-
ily members no longer needed to “force” them to take their medication since they now had the
self-motivation to carry through with the task.
The youth also described increased motivation to take care of themselves in other ways.
Many, for instance, described learning about nutrition as it relates to their health. They learned
about the importance of eating a balanced diet and consuming sufficient food to support ART
adherence—i.e., “foods which can help us to have energy so that this medicine can work in our
bodies” (female, 21 years). A 23-year-old explained how she used to feel “that diet was not nec-
essary,” but “from the time I started attending this [program], I am able to know. . .if I don’t
eat right. . .my health will be affected. And since then, my health has been better.”
Youth attributed their increased motivation for self-care to a combination of factors. For
most, the knowledge gained from the program enhanced their motivation for self-care. They
learned, for instance, the importance of taking their ART medication “properly” and “on time”
because “we know the effects of not doing so.” Many gained practical skills to apply in their
daily lives. They cited strategies for taking their medication (e.g., setting an alarm, keeping a
record/diary) and managing their stress. A 19-year-old male participant, for example,
described the importance of factoring his medication intake into his daily schedule; if he knew
he is due for his medication at 20 hours but was leaving home at 19 hours and was unsure of
his plans, he should bring the medication with him.
Youth also highlighted the supportive role of the YPM and HCP and their recognition of
the difficulties that youth face; as a 17-year-old female participant explained, “They tell
us. . .every person has a challenge. . .. I’m grateful because I did not know that they would be
this encouraging to me.” In particular, the youth described the benefits of meeting with a YPM
who was also living with HIV and only slightly older than them. It made them feel “comfort-
able” sharing information about their lives and the challenges they face, knowing that the YPM
would “understand more” than someone who was not living with HIV. According to a
21-year-old male participant, “If you are opening the secret to someone who is in the same sit-
uation as you, it just comes out easily, with no hesitation, fear, or embarrassment.” Finally, the
youth developed future aspirations. They learned that every person has a right to marry, no
matter their HIV status, and that it is possible to avoid giving HIV to a partner and to a baby.
This knowledge allowed them to envision healthy future lives with their HIV status.
“I have learned not to fear anyone or anything”: Overcoming shame and
fears of living with HIV, and developing greater feelings of self-worth
The second most-salient theme, which builds on the first, centered on how Project YES! helped
many youth accept their HIV status and “stop being scared.” The youth learned to identify
self-stigma and accept their HIV status “from the heart,” while gaining self-confidence and
greater feelings of self-worth. They learned to “ignore” negative comments from people about
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 6 / 13
HIV, and no longer feared socializing with others. They came to realize that being HIV-posi-
tive “doesn’t mean the end of your life.” For example:
Acceptance was difficult for me. So even taking medication daily was a problem. When I
came here. . .they were teaching me that . . .if you are taking your medication, you can do
things that people who are not sick do. . .Now, I am free to associate with anyone. I can
make friends with anyone. I can go to school. . .I used to feel as though I am not part of
those people.
(female, 18 years)
Sometimes even on our own you have a certain stigma. You feel embarrassed. You don’t
feel free in your own life. But for me, [the program] has taught me a lot. I can even stand in
public and talk about my status with confidence.
(female, 24 years)
By accepting their status, many youth were able to transcend their fears associated with liv-
ing with HIV, including speaking with HCP about their status and picking up their ART medi-
cation from the clinic. Several described how they used to avoid asking HCP questions about
living with HIV or sexual relationships out of concern that they would be judged—e.g.,
“Should I really ask? What will they think?” (male, 21 years). Project YES!, however, gave
youth an opportunity to become familiar with and confident around the HCP, showing them
that the HCP are resources for young people. As one explained:
Before we started having the meetings [for Project YES!], we were afraid of the
counselors. . . But now we have learnt that the problems we have, they are the ones who can
help us. . . They will teach you how to handle what you are facing. . . Now we look at them
[the HCP] as family, where you are open and you can say anything to them.
(male, 19 years)
Several described how they had begun to collect their medication independently rather
than sending someone else to collect their medication, since they no longer felt “afraid” that
someone they know would see them there.
Project YES! also helped some youth develop “that confidence” and “muster up the cour-
age” to disclose their HIV status to those people whom they could trust. A 20-year-old male
participant explained that before the project, “I was scared to disclose my status—even to tell
my best friend or some relatives of mine, for example, my younger brother or my sister. But
being part of Project YES! helped me and I don’t feel ashamed of being HIV-positive.”
“I am not alone”: Building a community for young people living with HIV
The final theme, discussed by about half of the youth, was that Project YES! helped them rec-
ognize that they are not the only ones living “a positive life.” Many youth felt isolated prior to
the project and were “surprised” and “happy” to discover that many others had the same HIV
status. A sense of community formed:
Project YES! has actually opened my eyes to see we are not alone. I am not alone. It’s made
me to see that even if though I have a family at home, there is another family I have at Proj-
ect YES! that would relate to everything I’m going through.
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 7 / 13
(male, 21 years)
Within this community, the youth were “free” to share their experiences and questions with
others who understood their situations.
They depicted the individual and group meetings, together, as critical to helping them over-
come their feelings of isolation. The individual sessions gave the youth an opportunity to open
up to their YPM about any personal issues they were facing or ask questions about topics like
condom use and sexual behavior, which they felt less comfortable raising in a group setting.
These sessions were especially useful for youth who described themselves as being reserved.
For example, “If you are a shy person, since you are just the two of you, you can ask about any-
thing” (male, 17 years). They bonded with and were encouraged by their YPM. A 15-year-old
male explained, “My peer mentor understands me, like, she knows me. She knows how to talk
to me, how to cheer me up. . . She’s just family to me.” A few youth recommended identifying
a dedicated private space for individual meetings with YPMs; some meetings had to take place
in larger spaces where other people were coming in and out, given the busy nature of the clinic
settings.
The group meetings complemented the individual meetings by fostering opportunities for
learning and relationship-building with other youth living with HIV. One participant disliked
that not everyone in his group chose to speak up during the group sessions. But most partici-
pants discussed how the group sessions allowed them to share their feelings, thoughts, ques-
tions, and challenges they are facing—i.e., the “things they may not even ask you at home”
(female, 17 years). Many appreciated talking with others who could relate to their situations.
Beyond the benefits of discussion and learning, several youth built lasting friendships with the
others.
Discussion
Our findings highlight the critical role of self-worth, identity, and sense of community for
young people living with HIV to engage in self-care behaviors. Extant data supports this find-
ing for other age groups. For example, among adults living with HIV in Zambia who disen-
gaged from HIV care, three-quarters re-engaged after repeated clinic outreach [34].
Qualitative research has elucidated how positive social interactions and relationships with
clinic providers can buffer against fears of living with HIV and stigma while making adults feel
respected, thus supporting re-engagement in care [35,36]. These feelings may have particular
influence among adolescents and young adults during a distinct developmental stage charac-
terized by identity formation and solidification. By addressing their concerns, fears, and ques-
tions, Project YES! helped free these youth from shame and fear and recognize their self-
worth. They gained the courage to disclose their HIV status to important figures in their lives,
which can have beneficial effects on social support [37]. They also became comfortable speak-
ing openly with HCP and picking up their ART medication from the clinic—changes which
were similarly observed in qualitative in-depth interviews with the HCP involved in delivering
Project YES! [28,30] and are increasingly recognized as critical in youth HIV care and treat-
ment [38]. Together, these findings reinforce and clarify the Project YES! quantitative RCT
results of reduced feelings of internalized stigma among intervention versus comparison par-
ticipants [16].
Our findings strengthen and extend the limited evidence [15] for the use of peer relation-
ships and modeling to improve youths’ HIV care and treatment outcomes. Project YES! partic-
ipants attributed the intervention with increasing their motivation to take their HIV care
“seriously” by regularly taking their medicine and attending clinic appointments. By receiving
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 8 / 13
information, practical skills, encouragement from Project YES! peer mentors and other partic-
ipants, they developed greater mindfulness towards their HIV care and enhanced future aspi-
rations. Other projects emphasizing peer connection have found positive outcomes along the
HIV care continuum in Zimbabwe [21] and Kenya [22]. Our findings support this evidence
while underscoring Project YES’s distinctive approach of using peer mentors rather than peer
educators who are actively engaged in role-modeling, listening, and problem-solving [16] and
who receive extensive training and pay [19]. Findings lend credence to the intervention draw-
ing on the five Cs for positive youth development [24]—particularly confidence and connec-
tion with peers and adults alike—and the Social Cognitive Theory constructs of self-efficacy,
agency, and observational learning [25,26]. Furthermore, these findings are consistent with
the in-depth interviews conducted with YPM and HCP, both of whom highlighted YPMs’
unique abilities to connect with the youth given their similar age and shared experience of liv-
ing with HIV [19,28]. Interestingly, these findings were consistent for both youth who had
viral load suppression and failure at midline data collection for the RCT. For those with viral
load failure at midline, it may be that other factors outside of the scope of the project were at
play in explaining the viral load failure, such as poverty, religious beliefs, or partner relation-
ship dynamics [8].
The IDI highlighted another distinctive feature of the Project YES! intervention in its inclu-
sion of peer-led individual and group counseling sessions, a combination which had great
appeal among the youth interviewed. Group-level interventions for young people living with
HIV have been praised for their ability to reach more adolescents using fewer resources than
individual-level approaches [39]. Indeed, the youth interviewed described these sessions as
essential to overcoming their feelings of isolation by interacting with peers who were also liv-
ing with HIV. They no longer had to wonder if they were the only ones living a “positive life.”
Our study, however, highlights the importance of also including individual-level sessions for
youth—particularly those describing themselves as shy—to feel comfortable discussing sensi-
tive topics. The individual sessions allowed the youth to bond with their YPM over shared
challenges and experiences, which the YPM themselves highlighted as key to building a foun-
dation of trust [19]. The combination of peer-led individual and group sessions thus supported
complementary but distinct aims while appealing to a variety of needs among the youth. Exist-
ing projects for youth living with HIV have typically included either individual counseling
[22] or group counseling [40,41] but not both, and these sessions are often led by adults [40,
41]. We are aware of only one project which draws on a similar methodology integrating peer-
led individual and group engagement with youth living with HIV [21], highlighting the impor-
tance of further exploring this approach as well as factors that influence its implementation in
future studies. In addition to the combination of group and individual sessions, IDI under-
scored benefits of the Project YES! model in facilitating meetings between the youth and their
regular HCP, which set a foundation on which these relationships could continue to grow
beyond the life of the project. Additionally, the youth interviewed were supportive of the range
of content covered in the sessions beyond ART adherence, such as nutrition/healthy living and
sexual and reproductive health.
One topic which did not emerge as a theme concerned the involvement of caregivers in the
Project YES! intervention. Some youth described benefits of having their caregivers included
in the project, but nearly half did not have a caregiver attend the program. This is a limitation
of the study given that caregiver involvement was not included as one of the sampling criteria.
As a result, the findings on caregiver involvement did not reach saturation. The topic should
be explored in future studies of Project YES! given that the family environment is recognized
as playing a critical role in youths’ HIV care and treatment practices [8–10,38]. Another study
limitation concerns the potential for social desirability bias given the use of individual
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 9 / 13
interviews, but we sought to account for this bias by drawing on methods to achieve qualitative
rigor recommended by Tobin and Begley (described above) [32].
Conclusions
Allowing youth to change their narrative from one of being “alone” and “scared” to having a
family and confidence in their future, combined with an understanding of how ART works,
can positively influence their ability to manage their HIV. One of the authors (JAD) had the
honor of hearing Dr. Jonathan Mann, the first Director of the World Health Organization’s
Global Programme on AIDS, speak in 1997 and he said something to the effect that before giv-
ing a youth a condom (to protect themselves from HIV) you need to give them a future. Proj-
ect YES! was built on the premise that the greatest experts available to help AYA living with
HIV achieve health outcomes and general wellness are young adults living with HIV. This
study shows how addressing HIV is not only about medication; it is about self-worth, identity,
and a sense of community. The program helped many accept their HIV status, develop greater
feelings of self-worth, and reduce their fear and shame of living with HIV. Interacting with
YPM and other peers living with HIV in both individual and group sessions helped the youth
realize that they are not alone with their HIV status. Together, these findings reinforce the
added value of using peer mentors in clinic settings to strengthen youths’ HIV care and treat-
ment practices. They highlight that in order to make progress with addressing HIV among
young people globally, we need to integrate personal and community agency into our pro-
grams and efforts.
Supporting information
S1 File. PLOS’ questionnaire on inclusivity in global research.
(DOCX)
Acknowledgments
We wish to thank the youth participants for their time and for openly sharing their views on
the program. We express our deepest thanks to the Project YES! youth peer mentors, study
staff, and the healthcare providers for the essential roles they played in this study. Special
thanks to Kayayi Chibesa, Able Hang’andu, and Gift Musenga for conducting the interviews.
Finally, we thank Ms. Teresa Peterson for her thoughtful and inclusive approach to developing
the Project YES! curriculum.
Author Contributions
Conceptualization: Virginia M. Burke, Julie A. Denison.
Data curation: Christiana Frimpong, Virginia M. Burke, Elizabeth A. Abrams.
Formal analysis: Katherine G. Merrill, Christiana Frimpong, Virginia M. Burke, Elizabeth A.
Abrams.
Funding acquisition: Julie A. Denison.
Methodology: Virginia M. Burke, Julie A. Denison.
Project administration: Christiana Frimpong, Virginia M. Burke, Sam Miti.
Supervision: Julie A. Denison.
Visualization: Katherine G. Merrill, Christiana Frimpong.
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 10 / 13
Writing – original draft: Katherine G. Merrill.
Writing – review & editing: Katherine G. Merrill, Christiana Frimpong, Virginia M. Burke,
Elizabeth A. Abrams, Sam Miti, Jonathan K. Mwansa, Julie A. Denison.
References
1. UNAIDS. Young People and HIV. 2021.
2. UNICEF. Adolescent HIV prevention. 2021.
3. Auld A, Agolory S, Shiraishi R, Wabwire-Mangen F, Kwesigabo G, Asadu E, et al. Antiretroviral
Therapy Enrollment Characteristics and Outcomes Among HIV-Infected Adolescents and Young
Adults Compared with Older Adults—Seven African Countries, 2004–2013. Centers for Disease
Control and Prevention: Morbidity and Mortality Weekly Report. 2014; 63(47):1097–118. PMID:
25426651
4. Nachega J, Hislop M, Nguyen H, Dowdy D, Chaisson R, Regensberg L, et al. Antiretroviral Therapy
Adherence, Virologic and Immunologic Outcomes in Adolescents Compared With Adults in Southern
Africa. J Acquir Immune Defic Syndr. 2008; 51:65–71.
5. Luna B, Paulsen D, Padmanabhan A, Geier C. The teenage braincognitive control and motivation. Cur-
rent directions in psychosocial science. 2013; 22(2):94–100.
6. Sanders R. Adolescent psychosocial, social, and cognitive development. Pediatrics in Review. 2013;
34(8):354–9. https://doi.org/10.1542/pir.34-8-354 PMID: 23908362
7. Hosek S, Harper G, Robinson L. Identity development in adolescents living with HIV. Journal of Adoles-
cence. 2002; 25:355–64. https://doi.org/10.1006/jado.2002.0480 PMID: 12175992
8. Ammon N, Mason S, Corkery J. Factors impacting antiretroviral therapy adherence among human
immunodeficiency virusepositive adolescents in Sub-Saharan Africa: a systematic review. Public
Health. 2018; 157:20–31.
9. Denison J, Packer C, Stalter R, Banda H, Mercer S, Nyambe N, et al. Factors Related to Incomplete
Adherence to Antiretroviral Therapy among Adolescents Attending Three HIV Clinicsin the Copperbelt,
Zambia. AIDS Behav. 2017.
10. Frimpong C, Burke V, Miti S, Nonyane B, Merrill K, Mwansa J, et al. How Does Learning one’s HIV Sta-
tus Relate to Viral Suppression? An Analysis among Perinatally Infected Adolescents and Young Adults
in Ndola, Zambia. Vulnerable Children and Youth Studies. 2021.
11. UNAIDS. Ending the AIDS epidemic for adolescents, with adolescents: A practical guide to meaning-
fully engage adolescents in the AIDS response 2016. https://www.unaids.org/sites/default/files/media_
asset/ending-AIDS-epidemic-adolescents_en.pdf.
12. UNICEF. Turning the tide against AIDS will require more concentrated focus on adolescents and young
people. 2020.
13. Casale M, Carlqvist A, Cluver L. Recent Interventions to Improve Retention in HIV Care and Adherence
to Antiretroviral Treatment Among Adolescents and Youth: A Systematic Review. AIDS PATIENT
CARE and STDs. 2019; 33(6). https://doi.org/10.1089/apc.2018.0320 PMID: 31166783
14. Murray K, Dulli L, Ridgeway K, Santo L, de Mora D, Olsen P, et al. Improving retention in HIV care
among adolescents and adults in low- and middle income countries: A systematic review of the litera-
ture. PLoS ONE. 2017; 12(9). https://doi.org/10.1371/journal.pone.0184879 PMID: 28961253
15. Ridgeway K, Dulli L, Murray K, Silverstein H, Santo L, Olsen P, et al. Interventions to improve antiretro-
viral therapy adherence among adolescents in lowand middle-income countries: A systematic review of
the literature. PLoS ONE. 2018; 13(1).
16. Denison J, Burke V, Miti S, Nonyane B, Frimpong C, Merrill K, et al. 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. 2020; 15(4):e0230703. https://doi.org/10.1371/journal.pone.0230703
PMID: 32240186
17. UNAIDS. Country page: Zambia. https://www.unaids.org/en/regionscountries/countries/zambia.
18. PHIA. Zambia population-based HIV impact assessment (ZAMPHIA), 2015–16. Summary sheet: pre-
liminary findings. New York, NY: PHIA Project; 2016.
19. Burke V, Frimpong C, Miti S, Mwansa J, Abrams E, Merrill K, et al. “It must start with me, so it started
with me.” Project YES! Youth Peer Mentor implementing experiences to support adolescents and
young adults living with HIV in Ndola, Zambia. PloS ONE. 2022; 17(2):e0261948.
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 11 / 13
20. Genberg B, Shangani S, Sabatino K, Rachlis B, Wachira J, Braitstein P, et al. Improving Engagement in
the HIV Care Cascade: A Systematic Review of Interventions Involving People Living with HIV/AIDS as
Peers. AIDS & Behavior. 2016; 20:2452–63.
21. Mavhu W, Willis N, Mufuka J, Bernays S, Tshuma M, Mangenah C, et al. Effect of a differentiated ser-
vice delivery model on virological failure in adolescents with HIV in Zimbabwe (Zvandiri): a cluster-ran-
domised controlled trial. Lancet Global Health. 2020; 8:e264–e75. https://doi.org/10.1016/S2214-109X
(19)30526-1 PMID: 31924539
22. Ruria E, Masaba R, Kose J, Woelk G, Mwangi E, Matu L, et al. Optimizing linkage to care and initiation
and retention on treatment of adolescents with newly diagnosed HIV infection. AIDS. 2017; 31:S253–
S60. https://doi.org/10.1097/QAD.0000000000001538 PMID: 28665883
23. Denison J, Burke V, Miti S, Frimpong C, Merrill K, Abrams E, et al. Impact of peer mentoring on viral
suppression and internalized stigma among HIV-positive adolescents and young adults in Ndola, Zam-
bia: Project YES! Youth Engaging for Success RCT Results. In press at PLOS ONE. 2020.
24. Lerner R, Lerner J. The positive development of youth: Comprehensive findings from the 4-H study of
positive youth development. Washington, DC.: National 4-H Council; 2013.
25. Bandura A. Social cognitive theory of self regulation. Organizational behavior and human decision pro-
cesses. 1991; 50(2):248–87.
26. Bandura A. Social cognitive theory: An agentic perspective. Annual review of psychology. 2001; 52
(1):1–26. https://doi.org/10.1146/annurev.psych.52.1.1 PMID: 11148297
27. Miti S, Handema R, Mulenga L, Mwansa J, Abrams E, Frimpong C, et al. Prevalence and characteristics
of HIV drug resistance among antiretroviral treatment (ART) experienced adolescents and young adults
living with HIV in Ndola, Zambia. PloS ONE. 2020; 15(8):e0236156. https://doi.org/10.1371/journal.
pone.0236156 PMID: 32804970
28. Abrams E, Burke V, Merrill K, Frimpong C, Miti S, Mwansa J, et al. “Adolescents do not only require
ARVs and adherence counseling”: A qualitative investigation of health care provider experiences with
an HIV youth peer mentoring program in Ndola, Zambia. PloS ONE. 2021; 16(6):e0252349. https://doi.
org/10.1371/journal.pone.0252349 PMID: 34106967
29. Gill P, Stewart K, Treasure E, Chadwick B. Methods of data collection in qualitative research: interviews
and focus groups. British dental journal. 2008; 204(6):291–5. https://doi.org/10.1038/bdj.2008.192
PMID: 18356873
30. Merrill K, Mwansa J, Miti S, Burke V, Abrams E, Frimpong C, et al. Experiences with a violence and
mental health safety protocol for a randomized controlled trial to support youth living with HIV. Global
Health Research and Policy. 2021; 6(40). https://doi.org/10.1186/s41256-021-00224-0 PMID:
34654487
31. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006; 3
(2):77–101.
32. Tobin G, Begley C. Methodological rigour within a qualitative framework. Journal of Advanced Nursing.
2004; 48(4):388–96. https://doi.org/10.1111/j.1365-2648.2004.03207.x PMID: 15500533
33. The National Health Research Act, 2013. National Assembly of Zambia. 2013.
34. Beres L, Scwartz S, Simbeza S, McGready J, Eshun-Wilson I, Mwamba C, et al. Patterns and Predic-
tors of Incident Return to HIV Care AmongTraced, DisengagedPatients in Zambia: Analysis of a Pro-
spective Cohort. Journal of Acquired Immune Deficiency Syndrome. 2021; 86(3):313–22. https://doi.
org/10.1097/QAI.0000000000002554 PMID: 33149000
35. Broaddus M, Hanna C, Schumann C. She makes me feel that I’m not alone: linkage to Care Specialists
provide social support to people living with HIV. AIDS Care. 2015; 27:1104–7. https://doi.org/10.1080/
09540121.2015.1028882 PMID: 25854534
36. Smith L, Fisher J, Cunningham C, Amico K. Understanding the behavioral determinants of retention in
HIV care: a qualitative evaluation of a situated information, motivation, behavioral skills model of care
initiation and maintenance. AIDS Patient Care STDs. 2012; 26:344–55. https://doi.org/10.1089/apc.
2011.0388 PMID: 22612447
37. Lee S, Yamazaki M, Harris R, Harper G, Ellen J. Social Support and Human Immunodeficiency Virus-
Status Disclosure to Friends and Family: Implications for Human Immunodeficiency Virus-Positive
Youth. Journal of Adolescent Health. 2015; 57:73–80.
38. WHO. HIV and adolescents: Guidance for HIV testing and counselling and care for adolescents living
with HIV. Geneva, Switzerland: World Health Organization; 2013.
39. MacPherson P, Munthali C, Ferguson J, Armstrong A, Kranzer K, Ferrand R, et al. Service delivery
interventions to improve adolescents’ linkage, retention and adherence to antiretroviral therapy and HIV
care. Tropical Medicine and International Health. 2015; 20(8):1015–32. https://doi.org/10.1111/tmi.
12517 PMID: 25877007
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 12 / 13
40. Bhana A, Mellens C, Petersen I, Alicea S, Myeza N, Holst H, et al. The VUKA Family Program: Piloting
a family-based psychosocial intervention to promote health and mental health among HIV infected early
adolescents in South Africa. AIDS Care. 2014; 26(1). https://doi.org/10.1080/09540121.2013.806770
PMID: 23767772
41. Kaihin R, Kasatpibal N, Chitreechuer J, Grimes R. Effect of an Empowerment Intervention on Antiretro-
viral Drug Adherence in Thai Youth. Behav Med. 2015; 4(4):186–94. https://doi.org/10.1080/08964289.
2014.911717 PMID: 24758271
PLOS ONE
Peer mentoring intervention: Experiences of youth living with HIV
PLOS ONE | https://doi.org/10.1371/journal.pone.0292719 October 13, 2023 13 / 13
Available via license: CC BY 4.0
Content may be subject to copyright.
