Understanding HIV-Related Mental Health Challenges and Contributing Factors Among Indonesian Adolescents Living with HIV

Abstract

Human Immunodeficiency Virus (HIV) has disproportionately affected various population groups, including adolescents living with HIV (ALHIV). In many contexts, ALHIV have been reported to experience mental health issues following their HIV diagnosis. However, there is a limited understanding of the mental health issues faced by ALHIV in Indonesia and the various contributing factors globally. This study aimed to explore the mental health challenges and their contributing factors among Indonesian ALHIV. A qualitative design employing one-on-one in-depth interviews was used to collect data from ALHIV (n = 20) in Yogyakarta, Indonesia. Participants were recruited using the snowball sampling technique, beginning with the dissemination of study information sheets through a healthcare facility that provides HIV care services and via a WhatsApp group for adolescents living with HIV. The data were thematically analyzed, guided by a qualitative data analysis framework. The findings showed that ALHIV experienced a variety of mental health challenges upon learning of their HIV-positive status. Their mental health was also influenced by a range of family-related factors, stigma, and discrimination, which were also facilitated by their specific situations and settings, including living in a shared house with parents and siblings and school setting where they met and interacted with different peer groups on a daily basis. Family-related factors, including broken homes, family conflicts, lack of family support, and being orphans, negatively impacted their mental health. The awareness of perceived and anticipated stigma, and the experience of enacted stigma or discrimination, also contributed to the mental health challenges they faced. The findings indicate a pressing need for tailored and targeted HIV intervention programs and activities that support their mental health, reduce stigma, and promote HIV status disclosure in safe ways for ALHIV both within the study setting and beyond.

Full text

Academic Editor: Carl A. Latkin
Received: 14 November 2024
Revised: 4 January 2025
Accepted: 6 January 2025
Published: 9 January 2025
Citation: Ward, P.R.; Puspitasari, R.;
Rose, A.; Gebremariyam, B.S.; Fauk,
N.K. Understanding HIV-Related
Mental Health Challenges and
Contributing Factors Among
Indonesian Adolescents Living with
HIV. Int. J. Environ. Res. Public Health
2025,22, 83. https://doi.org/
10.3390/ijerph22010083
Copyright: © 2025 by the authors.
Licensee MDPI, Basel, Switzerland.
This article is an open access article
distributed under the terms and
conditions of the Creative Commons
Attribution (CC BY) license
(https://creativecommons.org/
licenses/by/4.0/).
Article
Understanding HIV-Related Mental Health Challenges and
Contributing Factors Among Indonesian Adolescents Living
with HIV
Paul Russell Ward 1, Reni Puspitasari 2, Aasha Rose 3, Biniyam Sahiledengle Gebremariyam 1
and Nelsensius Klau Fauk 1, *
1Centre for Public Health, Equity and Human Flourishing, Torrens University Australia, Adelaide 5000,
Australia; paul.ward@torrens.edu.au (P.R.W.); biniyam.gebremariyam@student.torrens.edu.au (B.S.G.)
2Sekolah Tinggi Ilmu Kesehatan Bethesda Yakkum, Yogyakarta 55224, Indonesia; reni@stikesbethesda.ac.id
3School of Education, University of Southern Queensland, Toowoomba 4350, Australia;
aasha.rose@unisq.edu.au
*Correspondence: nelsensius.fauk@torrens.edu.au
Abstract: Human Immunodeficiency Virus (HIV) has disproportionately affected various
population groups, including adolescents living with HIV (ALHIV). In many contexts,
ALHIV have been reported to experience mental health issues following their HIV diagnosis.
However, there is a limited understanding of the mental health issues faced by ALHIV
in Indonesia and the various contributing factors globally. This study aimed to explore
the mental health challenges and their contributing factors among Indonesian ALHIV. A
qualitative design employing one-on-one in-depth interviews was used to collect data
from ALHIV (n= 20) in Yogyakarta, Indonesia. Participants were recruited using the
snowball sampling technique, beginning with the dissemination of study information
sheets through a healthcare facility that provides HIV care services and via a WhatsApp
group for adolescents living with HIV. The data were thematically analyzed, guided by
a qualitative data analysis framework. The findings showed that ALHIV experienced a
variety of mental health challenges upon learning of their HIV-positive status. Their mental
health was also influenced by a range of family-related factors, stigma, and discrimination,
which were also facilitated by their specific situations and settings, including living in a
shared house with parents and siblings and school setting where they met and interacted
with different peer groups on a daily basis. Family-related factors, including broken homes,
family conflicts, lack of family support, and being orphans, negatively impacted their
mental health. The awareness of perceived and anticipated stigma, and the experience of
enacted stigma or discrimination, also contributed to the mental health challenges they
faced. The findings indicate a pressing need for tailored and targeted HIV intervention
programs and activities that support their mental health, reduce stigma, and promote HIV
status disclosure in safe ways for ALHIV both within the study setting and beyond.
Keywords: mental health; contributing factors; stigma; discrimination; ALHIV;
qualitative
;
Indonesia
1. Introduction
According to the World Health Organization (WHO), adolescents are individuals in
the age group of 10–19 years [
1
]. They are one of the population groups that have been
disproportionately affected by the Human Immunodeficiency Virus (HIV) [
2
,
3
]. Of an
Int. J. Environ. Res. Public Health 2025,22, 83 https://doi.org/10.3390/ijerph22010083

Int. J. Environ. Res. Public Health 2025,22, 83 2 of 17
estimated 39.9 million people living with HIV (PLHIV) globally reported in 2023, approx-
imately 1 million were adolescents aged 15–19 years, with 140,000 newly diagnosed in
2023 [
4
,
5
]. The same report also estimates 14,000 AIDS-related deaths among adolescents
in this age group in 2023 [
4
,
5
]. In Asia and the Pacific region, where Indonesia is located,
around a quarter of the 300,000 new HIV infections in 2023 were diagnosed among ado-
lescents and young people aged 15–24 years [
6
]. In Indonesia, the national AIDS report
shows a total of 566,707 PLHIV, of whom 57,299 were newly diagnosed in 2023. Among
these,
5.5 per cent
are adolescents aged 15–19 years, which increased from 3.9 per cent in
2022 [
7
]. Of the 2023 newly diagnosed cases, 45 per cent were transmitted through sexual
contacts, 43 per cent were unknown means of transmission, and 12 per cent were spread
through other means of transmission, including mother-to-child transmission and injecting
drug use [7].
Studies in different settings globally have reported that Adolescents Living with HIV
(ALHIV) experience an increased burden of mental health challenges (e.g., depression,
anxiety, attention-deficit hyperactivity disorder, post-traumatic stress disorder (PTSD),
etc.) upon learning of their HIV status, which affect their thoughts, feelings, emotions,
behaviors, and interactions with others [
8
–
12
]. For example, a 2021 systematic review
and meta-analysis involving 10 studies from 8 countries reported a depression prevalence
of 26.07% among ALHIV [
13
]. Other studies in developed countries, including France,
Italy, Poland, Canada, and the US, found that depression, anxiety, attention-deficit hy-
peractivity disorder, and PTSD were more prevalent among ALHIV compared to their
HIV-negative
peers [8,14,15].
Similarly, in low- and middle-income countries (LMICs), ac-
cumulating evidence suggests that ALHIV face various mental health challenges after their
HIV diagnosis [
9
,
16
,
17
]. For instance, studies in Africa, where an estimated 80% of ALHIV
reside, reported that anxiety disorders, depression, fear, and PTSD are common among this
population [9,10,16,18,19]. Additionally, suicidal ideation and attempts are also identified
as mental health issues among these adolescents in several countries, including Kenya,
Uganda, and South Africa [11,19–21].
The WHO has suggested that in addition to the HIV diagnosis itself, biomedical,
familial, economic, and social or environmental factors encountered by ALHIV within their
families and communities may increase the risk of mental health issues [
22
]. Limited evi-
dence from studies in Malawi and South Africa shows that HIV stigma and discrimination,
reflected in rejection and physical and emotional abuse within family, community, school,
and healthcare settings, are associated with mental health issues in ALHIV [
19
,
23
]. HIV
stigma and discrimination may not only increase the risk of mental health challenges among
ALHIV but also serve as significant barriers to accessing and adhering to HIV treatment or
antiretroviral therapy (ART), potentially resulting in unsuppressed or increased viral load
and poor health outcomes [
24
,
25
]. Low household income and caregiver mental health
problems are also reported to be contributing factors for depressive symptoms among AL-
HIV in Thailand and Cambodia [
26
]. Similarly, having both parents pass away is associated
with increased anxiety symptoms among ALHIV in Indonesia [
27
]. Additionally, a recent
study in Nigeria reported that alcohol consumption is associated with higher mental health
scores among ALHIV compared to those who do not consume alcohol [28].
Despite the reported mental health challenges among ALHIV, there is a lack of ev-
idence in the literature regarding the specific factors that contribute to these challenges.
Moreover, most studies exploring HIV-related mental health issues in ALHIV in LMICs
have primarily been conducted in African countries [
11
,
16
,
29
], with only a few being carried
out in Malaysia, Thailand, Vietnam, Cambodia [
26
,
30
,
31
], China [
32
], and Indonesia [
27
].
This indicates that despite the increasing number of HIV infections among adolescents in
Asia, there is a lack of evidence on mental health challenges and the contributing factors

Int. J. Environ. Res. Public Health 2025,22, 83 3 of 17
to ALHIV in the region [
6
]. In Indonesia, although there has been a more than 300-fold
increase in HIV infections over the last decade [
6
,
7
], evidence on HIV-related mental health
challenges and their contributing factors among ALHIV is lacking [
27
,
33
,
34
]. Within In-
donesian society, HIV and PLHIV are highly stigmatized, as evidenced by negative social
perceptions and moral judgments. HIV is often viewed as an infection associated with
deviant behaviors and regarded as a curse, while PLHIV are seen as individuals with low
moral standards, “trash people”, and sinners [
35
,
36
]. Such perceptions and judgments
appear to be rooted in, or supported by, certain religious values and beliefs that regard
extra- or pre-marital sex and sexual relations with multiple partners as sinful, and HIV as a
curse for PLHIV as it is intertwined with human sexuality [
35
,
37
]. Moreover, the communal
characteristics and strong community ties within Indonesian society appear to facilitate
the spread of these negative social perceptions and moral judgments across various set-
tings, including families, communities, schools, workplaces, and healthcare settings [
38
,
39
].
Therefore, for ALHIV in Indonesia, their frequent social interactions with peers at school
and within their communities, and who still live with parents and siblings in shared houses,
these contexts can significantly shape their experiences of living with HIV, as well as their
emotions, mental health, and social relationships, in ways that differ from those of adults
living with HIV. This study aimed to address this gap by exploring in-depth the views and
experiences of ALHIV in Yogyakarta, Indonesia, regarding the mental health challenges
they faced upon learning of their HIV status and the contributing factors. Understanding
the views and real-life experiences of ALHIV can be useful to inform policies and the
development of tailored approaches, intervention programs, and various activities that
support their mental health, reduce stigma, and promote HIV disclosure in safe ways for
ALHIV in the study setting and similar contexts in Indonesia and beyond [40].
2. Materials and Methods
2.1. Study Design and Participant Recruitment
A qualitative phenomenological study design [
41
] employing in-depth interviews
was used to explore participants’ views and experiences of HIV-related mental health
challenges and factors that contributed to the challenges. The use of this qualitative design
was useful since it enabled the researchers to probe deeply into how respondents viewed
their experiences of HIV-related mental health challenges within situations and settings
(family, school, community, healthcare settings) where they lived and interacted with
other people, and how they understood factors that contributed to those challenges. The
qualitative design has been described to be effective in studying participants’ views in their
settings and can lead to a deeper insight into their real-life experiences [42].
The study participants were ALHIV from urban communities in Yogyakarta municipal-
ity, Indonesia. This setting was selected because of feasibility, familiarity, and the potential
of undertaking the current study successfully. They were recruited using a combination
of the purposive (to recruit initial participants) and snowball sampling techniques. The
snowball technique was employed due to the challenges associated with accessing this
hard-to-reach population (ALHIV). This approach was necessitated by the sensitivity of
the topic under investigation, the high vulnerability of this group, and the widespread
stigma surrounding HIV that affects PLHIV in the study setting [
43
,
44
]. The study infor-
mation sheets, which also contained the contact details of the field researcher (RP), were
initially distributed to potential participants and/or their parents/guardians through the
receptionist and information board at a healthcare facility providing HIV care services
in the study setting and via a WhatsApp group of adolescents living with HIV. The field
researcher approached the head of a healthcare facility providing HIV care services in the
study setting and the coordinator (a companion of PLHIV who is also living with HIV) of a

Int. J. Environ. Res. Public Health 2025,22, 83 4 of 17
WhatsApp group for initial conversations regarding the possibility of the distribution of
study information sheets to potential participants. Some initial participants who contacted
the field researcher and confirmed their participation in the study were recruited for an
interview. This was then followed by the snowball technique where, at the end of the
interviews, they were asked to provide multiple other referrals and help distribute copies
of the study information sheets to their eligible friends who might be willing to participate
in this study [
43
]. Participants were recruited based on several inclusion criteria. They had
to be: (i) an adolescent living with HIV, (ii) aged between 16 and 18 years, and (iii) willing
to voluntarily participate in this study. For participants under 18 years, consent from
their parents or guardians was sought before their participation. The study information
sheets and consent form were sent via WhatsApp, email, or provided in person by the field
researcher. When the participant was under 18, both they and their parents/guardians
signed written consent forms.
2.2. Data Collection
Data collection was conducted with ALHIV using in-depth interviews from June to
October 2023. They were interviewed online via WhatsApp or phone calls, while some
were interviewed offline in person in a private room at their homes. The options for both
offline and online interviews were made available to minimize barriers to participation
and to allow the participants to choose the mode of interview that best suited them. In
addition, most online interviews were carried out via WhatsApp video calls, which en-
abled the researcher to observe non-verbal language throughout conversations with the
participants. Time, venue, and modes of interview were agreed upon by the field researcher
or interviewer (RP/female) and each participant during initial contact for participation
confirmation. The field researcher is a lecturer and researcher who has undergone formal
training in qualitative research methods during her master’s program (M.Kes). She has
research experience in various topics related to public health and nursing topics, including
HIV. Interviews were conducted in Bahasa Indonesia (Indonesian) and audio recorded.
Interviews were focused on several main areas, including the participants’ account of
how they contracted HIV and how they were informed or knew about their HIV status,
their views and experiences of mental health challenges upon learning of their HIV status,
their lived experiences at home, in their community, at school, or on campus after the
diagnosis, and their views on factors that also contributed to mental health challenges
they faced. The interview guide was developed in English and then translated into In-
donesian (
Supplementary File S1:
Interview Guide). Both versions went through several
revisions based on comments from the researchers and from the Human Research Ethics
Committee, Torrens University Australia in Australia and Medical and Health Research
Ethics Committee, Krida Wacana Christian University in Indonesia. Interviews took ap-
proximately 35–50 min. Two participants were accompanied by their mothers at their
request during the interviews. The number of participants or interviews was determined
based on whether the collected data or information had been rich enough to address the
research aim and whether data saturation had been reached. Data saturation was indicated
in the similarity of information provided by the last few participants, suggesting that data
collection had reached the point where no new insights were emerging, indicating that an
adequate sample size had been reached [
45
]. Finally, twenty adolescents were recruited and
interviewed in this study. Before participating in the interviews, the consent forms were
returned to the field researcher, indicating the participants’ voluntary participation. Some
returned the form in person on the interview day while others sent it back to the researcher
through email or WhatsApp. No repeated interviews were conducted with any of the
participants. Participants and researchers had no established relationships prior to the

Int. J. Environ. Res. Public Health 2025,22, 83 5 of 17
study. The interview transcripts were not returned to participants to seek their corrections
and comments given the sensitive nature of this research topic and to avoid the possibility
of the transcripts of participants who had not been open about their HIV status being
received and read by their family members.
2.3. Data Analysis
Before commencing the comprehensive analysis of the data, the audio recordings of
the interviews were transcribed verbatim. Data analysis had been started alongside the data
collection process. Transcriptions were made following each interview, which facilitated
the direct integration of field notes into each transcript (RP and NKF). This also enabled the
researchers to appreciate the richness of the information or data provided by the participants
and to determine whether data saturation had been reached. Although the data analysis
was carried out by NKF, ongoing discussions and sharing of the progress were maintained
with other researchers throughout the analysis and manuscript drafting phases, during
which revisions and restructuring of the themes occurred. Data analysis was conducted
in Indonesian to preserve the social meaning attached to the participants’ narratives. For
the purpose of this publication, selected quotes were translated into English by NKF,
who is fluent in Indonesian and English, and then reviewed by RP who is also fluent in
both English and Indonesian. To ensure accuracy, comparisons of the original Indonesian
transcripts with the English translations were consistently performed throughout the data
analysis and manuscript writing stages [
46
]. Additionally, other authors (PRW, AR, BSG)
reviewed the English translations during the manuscript drafting and revision processes to
maintain quality. The analysis followed a qualitative data analysis framework [
47
], offering
a systematic approach to data management enhancing the rigor, transparency, and validity
of the analytic process.
The analysis was performed by repeatedly listening to each audio recording and
reading the transcript. At this stage, the narrative in each transcript was segmented into
smaller data extracts and labels, notes, and comments were added. In the following step,
key concepts and issues identified from the transcripts were listed to create a thematic
framework. This process was iterative, involving continuous refinement of the themes
based on whether there were sufficient coded data extracts or information to support them.
Next, data indexing was performed by assigning open codes to data extracts. This was
followed by close coding, involving identifying and grouping similar or redundant codes
into overarching themes and sub-themes. For example, codes assigned to participants’
accounts regarding self-isolation, feelings of anger and sadness, denial of their HIV status,
overthinking, worry, depression, and suicidal ideation were collated under the theme
“HIV-related mental health challenges facing ALHIV”. Codes reflecting familial factors,
such as broken homes, family conflicts, lack of family support, and being orphans, that
negatively impacted the mental health condition of ALHIV were grouped under the theme
“Individual factors contributing to mental health challenges faced by ALHIV”. Codes on
perceived stigma, anticipated stigma, and enacted stigma faced by these adolescents within
their family, community, school, or healthcare settings that affected their mental health were
grouped under the theme “Stigma, discrimination, and mental health challenges faced by
ALHIV”. The last theme was initially named “Social factors and mental health challenges
among ALHIV”, but in the end, it was revised to the current one to be precise. The findings
(codes and themes) were consistently compared both within and across interviews during
the data analysis and writing stages. Ultimately, all the data were mapped and interpreted,
and the final agreed-upon themes and interpretations are presented in this manuscript.

Int. J. Environ. Res. Public Health 2025,22, 83 6 of 17
2.4. Ethical Consideration
Ethics approvals for this study were obtained from Human Research Ethics Committee,
Torrens University Australia, Australia (No. 0214, 01/12/2022) and Medical and Health
Research Ethics Committee, Krida Wacana Christian University, Indonesia (No. SLKE:
1327/SLKE-IM/UKKW/FKIK/KE/VIII/2022). Before commencing interviews, partici-
pants again received a verbal explanation from the interviewer about the aim of the study
and the future use of the data or information they provided. They were informed that their
participation was voluntary and there would be no consequences if they withdrew their
participation or information (data) before, during, or after the interview. They were also
advised that the interviews would be audio-recorded, any personal information would
be removed from the transcripts to maintain the anonymity and confidentiality of the
information, and pseudonyms would be used. All the names attached to the direct quotes
under the ‘Results’ section are pseudonyms. Given the topic of the study and the potential
for emotional discomfort during the interviews, these adolescents were informed that an
HIV counsellor, whom they had previously consulted, and support from a companion for
individuals living with HIV were available at no cost should they require assistance.
3. Results
The adolescents interviewed in this study comprised 6 girls and 14 boys, aged between
16–18 years; 12 were 18 years old, 5 were 17, and 3 were 16 years old. Eight were still in
high school, six graduated high school, and the others recently enrolled in university. Eight
adolescents acquired HIV through mother-to-child transmission (MTCT), while twelve
were infected through sexual contact, with five boys acquiring it through homosexual
contact or sex with men. Most of the participants had been diagnosed with or known about
their HIV status for several years, while six were newly diagnosed with the infection within
a few months of the interviews.
The findings presented below are organized into three main themes: (i) HIV-related
mental health challenges facing ALHIV, (ii) Family-related factors associated with health
challenges in ALHIV, and (iii) Stigma, discrimination, and mental health challenges faced
by ALHIV. The themes are explained in detail below.
3.1. HIV-Related Mental Health Challenges Facing ALHIV
The diagnosis of HIV and living with the condition significantly affected the mental
health of the adolescents interviewed in this study. Both female and male participants
shared their experiences with various HIV-related mental health challenges, including
self-isolation, daydreaming, feelings of anger and sadness, denial of their HIV status, over-
thinking, anxiety, depression, and suicidal thoughts. Ayu, a 16-year-old girl, described
how she often “isolated” herself and “daydreamed” in her room after discovering her HIV
positive status, which she viewed as something negative, despite not fully comprehending
it at the time. A similar experience was recounted by Pram, an 18-year-old boy who con-
tracted the virus through heterosexual contact. Following his HIV diagnosis, he “isolated”
himself in his room due to confusion about his situation and a lack of understanding
regarding the actions he could take. Retreating to his room became a means for him to
avoid interacting with others, including his own family members, and to escape inquiries
about his HIV status.
“I often isolated myself in my room, daydreamed, and my mind was blank because I
couldn’t fully understand what I was experiencing even though I knew that this was
something negative”. (Ayu)

Int. J. Environ. Res. Public Health 2025,22, 83 7 of 17
“I was very confused at that time (early stage of HIV diagnosis), not knowing what I
should do. I also didn’t want to meet other people, didn’t want to talk to anyone, fearing
that they would ask about my condition. That’s why I just locked myself away”. (Pram)
Furthermore, Aditya, who contracted HIV through heterosexual relations, tended to
“overthink” his positive HIV status and felt “worried” and “afraid” after being diagnosed
with HIV, as his HIV status constantly lingered in his mind. Not only that, but he was
also perpetually “worried” about the possibility of others discovering his HIV status and
endeavored to reassure himself by asking healthcare professionals about the confidentiality
of his status. The experience he went through highlights the burden of mental health
challenges, especially during the initial stage of HIV diagnosis:
“I try to just go through it, but I still often think about why my situation is like this. I am
afraid to be open (with others) about my condition. Every day I feel worried and wonder
what if others don’t understand my situation”. (Aditya)
The self-isolation by Ayu, Pram, and others appeared to also be influenced by the
circumstances of living with their parents and siblings or extended family members in
shared house, which complicated their ability to avoid interactions and conversations with
others in the family and to be free from parental supervision. Such circumstances not only
placed intense pressure on them but also led to increased difficulties in concealing their HIV
status from their parents or siblings, as experienced by Pram, Aditya, and others such as
Richard, who was diagnosed two months prior to the interview, and Silvia, who lived with
her extended family after her parents passed away. These circumstances created difficulties
for them to feel free in managing their health conditions, engaging in activities of their
choosing, and making decisions to support their mental health as adults living with HIV
would do:
“I hide my medication from them all because I do not want them to know (about my HIV
status). I conceal the medicines in the seams of my clothes in the wardrobe. Sometimes I
feel so worried if they (his family members) come into my room. . . ”. (Richard)
“I carefully keep it (his/her HIV status) secret so that they (her extended family) do not
find out. . . ”. (Silvia)
Wisnu, a 17-year-old boy who contracted HIV through homosexual contact with other
men, also faced significant mental health challenges. He experienced prolonged periods of
depression, during which suicidal thoughts frequently occupied his mind. He contemplated
“making it fast” (suicide) by jumping from a bridge or throwing himself in front of a train.
His depression and suicidal ideation seemed to be exacerbated by his awareness of the
prevalent social perceptions of HIV as a “taboo”, “disgusting”, and “scary” infection, which
he appeared to internalize. Furthermore, the fact that he contracted HIV through same-sex
contact seemed to add another layer of burden, making it difficult for him to be open about
his situation with his family. Wisnu’s story highlighted the unacceptance of HIV, PLHIV,
and homosexuality within communities and reflected the heightened difficulties of living
with HIV:
“The issue of HIV in Indonesia is truly taboo. It is very saddening when someone is
infected with HIV, as many people feel fear and disgust towards the condition. At that
time, I was indeed experiencing a prolonged period of depression. According to the doctor,
I was suffering from moderate depression. I even contemplated suicide, considering
jumping from a high bridge or throwing myself in front of a train to end my life instantly.
I just wanted all of this to be over quickly”. (Wisnu)
Wisnu’s and others’ awareness of the various negative social perceptions surrounding
HIV, PLHIV, and homosexuality was further compounded by their specific situations as

Int. J. Environ. Res. Public Health 2025,22, 83 8 of 17
adolescents, where they had to attend school, meeting and interacting with different peer
groups on a daily basis. Yeni, a high school student, clearly described such a situation
that left her constantly worried and afraid of the possibility of her schoolmates finding
out about her health condition. This circumstance has made her very selective in choosing
friends at school to avoid such a possibility. A similar experience was shared by Heri, who
admitted to feeling uncomfortable and overthinking the questions posed by some of his
classmates regarding his health every time he requested leave for medical reasons:
“I am now in senior high school and every day I go to school, meet, and mingle with my
friends at school, but I often feel worried and afraid that some might find out about my
health condition.
. . .
. I know that many people are scared of HIV, which is why I have
been cautious in choosing friends at school”. (Yeni)
“I go to the hospital to collect my medication (ART) every month and usually inform the
school that I am ill. My friends often ask, “What illness do you have?” This makes me
feel uncomfortable, and at times I find myself overthinking it. I always try to come up
with alternative reasons so that they do not know what I am experiencing”. (Heri)
3.2. Family-Related Factors Associated with Mental Health Challenges in ALHIV
The adolescents in this research recounted various family-related factors that con-
tributed to the burden of mental health challenges they experienced. These included living
in a disrupted family home, conflicts or disputes among family members, a lack of support
from family members or parents, and the loss of both parents. These issues appeared
to create extra difficulties for them as they were still living with their parents and were
dependent on their support in many aspects, a situation which seems to be different to that
of most adults living with HIV, who can manage their own lives independently. Ayu de-
scribed her disrupted family home by referring to her parents’ divorce, a situation leading
to her feeling of anger and struggle to accept her condition of living with HIV. A similar
experience was shared by Gunawan, who was diagnosed with HIV three months prior
to his interview. His parents were divorced and did not communicate with each other,
a situation that made him feel alone and which he admitted increased the burden of the
mental health challenges he faced:
“My father transmitted HIV to my mother, then left us, neglecting us. I cannot accept
this. We have to bear the consequences even though it is not my mother’s fault or mine. I
am angry and frustrated”. (Ayu)
“I come from a broken home; I feel alone carrying all this burden. . .”. (Gunawan)
Gunawan further described the characteristics of his family members. He realized
that both his parents and his siblings were “temperamental”, which made him feel afraid
and reluctant to be open about his HIV status with them. Similarly, Richard perceived
the conflicts among his siblings within his family as a condition that heightened his fear
and added to the burden of living with HIV. Such family situations appeared to leave
these adolescents with no option but to face it, as they still lived with their parents and
siblings and were unable to manage their lives independently. This circumstance further
compounded the mental health challenges associated with managing HIV:
“My siblings and I do not get along with each other. We are currently facing family
problems, which is why I feel afraid and heavily burdened by my condition”. (Richard)
The lack of support from family members, particularly parents, was also a contributing
factor to the mental health burden experienced by these adolescents. This was not only
illustrated by Gunawan, Richard, and seven other adolescents who did not disclose their
HIV status to their families, but also by others whose HIV status was known to their family

Int. J. Environ. Res. Public Health 2025,22, 83 9 of 17
members. For Joko, his family was aware of his HIV status; however, his mother and
older brother did not accept his condition and did not provide the support he hoped for.
This has left him feeling “very disappointed”. Pram had a similar experience, as he was
ignored by both of his parents without any support for months after he informed them
of his HIV status, a situation that left him feeling down and desperate. Considering that
these adolescents lived with their parents and were not yet able to support themselves,
their lived experiences highlight the significant importance of family support for ALHIV to
cope with the HIV-related challenges they encountered and to navigate living with HIV:
“My mother doesn’t accept (his HIV status) until now
. . .
My parents do not provide any
support at all. This has made me feel very disappointed. . .”. (Joko)
“I was ignored by my parents for several months, with no support whatsoever. I felt down
and desperate at that time. . .”. (Pram)
Furthermore, homophobia within families by parents was another family-related
factor that created difficulties for five adolescents who are men who have with men (MSM)
in managing the mental health challenges facing them while at the same time concealing
their homosexual orientation from their parents and others. Bambang, who contracted
HIV through same-sex relationships, expressed that his sexual orientation is a significant
concern for him. He felt anxious and afraid to inform his parents about his HIV status,
as it might lead to questions regarding how he acquired the infection and potentially
expose his sexual orientation. He further elaborated that same-sex relationships are heavily
challenged within the community he comes from, including within his own family. The
same fear was echoed by Chayo, a first-year university student. He believed that if his
HIV status were to be discovered by his family, his parents would undoubtedly seek to
understand how he contracted HIV. He feared that if his sexual orientation were revealed,
it would become a source of shame for his family. This caused him considerable worry
and fear, leading him to choose to live in a rented room and conceal his HIV status from
others, including his family. Their narratives highlight the pervasive lack of acceptance
of both HIV and same-sex relationships within their families and communities, as well
as a significant absence of open communication with their parents regarding HIV or their
sexual orientations:
“I am afraid because same-sex relationships are not accepted; they are considered abnormal
and condemned by people. I do not want my parents to know. I am now anxious about
how to tell my parents about my HIV status”. (Bambang)
“If my family, especially my father and mother, find out (about my HIV status), they will
want to know how I got infected. I am very anxious; if they discover that I was infected
through a same-sex relationship, it would be a disgrace for the family. . .”. (Chayo)
3.3. Stigma, Discrimination, and Mental Health Challenges Faced by ALHIV
Stigma and discrimination related to HIV significantly contributed to the mental health
challenges faced by adolescents in this study. They experienced perceived stigma, antic-
ipated stigma, and enacted stigma within their family, community, school, or healthcare
settings, which affected their mental health. The specific settings they were in, including
living with parents or extended families in a shared house, school setting with massive
numbers of students, and different peer groups with whom they interacted on a daily
basis posed an increased worry, fear, and challenge of the possibility of their HIV status
being revealed. For instance, Silvia (an orphan) described the perceived stigma that is
reflected in her awareness and understanding of how non-infected individuals behave
towards or think about people living with HIV. She was aware of the potential “negative
thoughts” from her extended family if her HIV status were to be revealed, leading her to

Int. J. Environ. Res. Public Health 2025,22, 83 10 of 17
feel “worried” and “afraid” and to conceal her HIV status from them. The fact that she did
not feel close to her extended family members further reinforced her perceived stigma and
her decision to hide her HIV status. Gibran, a 17-year-old boy who contracted the virus
through unprotected heterosexual relations, was also aware that many people in society
“are not yet able to accept” those living with HIV and hold negative views towards them.
This made him “afraid” of his HIV status being discovered by his friends at school:
“I am afraid and concerned that they (her extended family from her mother’s side) will
think negatively about me, which is why I am not yet ready to inform them about my
HIV status. They might be afraid to get close to me or even ask me to leave. I am not very
close to them as I have only recently moved here. . .”. (Silvia)
“There are still people who cannot accept a friend who is living with HIV. They do not
want to associate with him because they fear transmission. There are still many negative
perceptions about those living with HIV, which is why I am scared and hide my status; I
do not feel brave enough to share it with my friends”. (Gibran)
Aditya echoed the same perceived stigma and explained his awareness of common
social perceptions about people living with HIV as being “disgusting” and “dirty” due to
various negative thoughts regarding HIV and how individuals contracted it. This made
him feel fearful and ashamed if others were to know about his HIV status:
“Many people feel disgusted (by those with HIV), considering them dirty. That’s what
sometimes makes me anxious, scared, and ashamed. . .”
Furthermore, Richard described his anticipation about the negative actions his siblings
might take against him if his HIV status were to be revealed (anticipated stigma). The
situation of living in the same house as his parents and siblings seemed to also shape his
worry about the high possibility of them finding out about his HIV status and using it as
a reason to attack him. Similarly, Gunawan feared that he could be subjected to physical
abuse by his father if it were known that he was infected with HIV through sexual relations.
This fear led him to conceal his HIV status from his family. Such experiences may not
be encountered by adults living with HIV who are not in situations similar to those of
these adolescents or those who do not live in shared housing with parents or extended
family members:
“I am afraid that this (his HIV status) will be used as a reason to attack me because we are
having family problems. This is also one of the things that makes me worried too much”.
(Richard)
“My father could do things I don’t want, which is why I am scared and always on edge.
I could be beaten if they (the family) find out that I have HIV and that I contracted it
through sexual relations”. (Gunawan)
Enacted stigma, which is reflected in various discriminatory attitudes and behaviors
exhibited by others, was also experienced by most of the participants. These negative
attitudes often originated from parents, friends, teachers, and healthcare professionals,
significantly impacting their mental health. Joko recounted how his mother would separate
his food and eating utensils from those of others, which made him “feel sad”. While he
disagreed with such treatment, Joko admitted that he felt powerless to do anything other
than accept it. A similar narrative of HIV-related discrimination was shared by Ayu, who
experienced being “avoided” and “bullied” by her friends at school due to HIV-related
changes in her physical appearance or skin. Furthermore, she described other children
who were not allowed by their parents to engage in certain activities or play with her in her
community. Such discriminatory behaviors from others made her feel pressured and afraid
to socialize. It is evident that the specific settings of the family house where they lived

Int. J. Environ. Res. Public Health 2025,22, 83 11 of 17
with parents and other family members and the school where they met and interacted with
peers daily shaped and contributed to their experience of enacted stigma or discrimination
against them and the mental health challenges they faced:
“My mother always separates my food and eating and drinking utensils, and they are not
allowed to be mixed with others. She always instructs others in the house to separate
my eating utensils. I cannot accept this; I feel sad being treated this way, but I can only
cry. . .”. (Joko)
“When I was little, I was often avoided and bullied by my friends. My skin turned dark
and there were wounds on my legs. They called me dirty. No one wanted to be near me.
They refused to eat or play with me. Neighbors did not allow their children to visit me at
my house. Sometimes I couldn’t sleep
. . .
. I felt pressured, and because of that, I didn’t
like making friends. . .”. (Ayu)
Ganjar, a 16-year-old boy, described experiencing similar discrimination related to HIV
at school from his teachers when they learned about his HIV status. This was reflected in the
school’s decision to prevent him from attending in-person classes, instead instructing him
to participate online. This situation led to mental health challenges, including feelings of
isolation and stress due to his inability to interact with his peers. Discriminatory treatment
was also experienced by Yanri, who recounted an incident where a healthcare professional
loudly mentioned her HIV status in front of other patients at a healthcare facility, causing
her embarrassment and concern that others would remember her status:
“When the school principal and some teachers knew that I have HIV, they asked me to
attend classes online. After a while, I began to feel lonely and unable to socialize with my
friends; sometimes I felt stressed because I was suddenly cut off from them”. (Ganjar)
“I felt extremely embarrassed when my HIV status was suddenly called out loudly.
Everyone was looking at me”. (Yanri)
Yanri further shared her constant worry about the confidentiality of her HIV status
every time she met or interacted with others, particularly in healthcare facilities, fearing
that her HIV status might be known by those with whom she interacted.
4. Discussion
This study explored the mental health challenges faced by ALHIV, and various family-
related factors, including stigma and discrimination, that contributed to those challenges.
The findings highlight significant mental health challenges encountered by these individ-
uals, including feelings of isolation, denial, sadness, anger, fear, worry, depression, and
suicidal ideation upon learning of their HIV status. These are consistent with previous find-
ings reporting prevalent mental health issues, such as depression, anxiety, PTSD, attention
deficit hyperactivity disorder, and suicidal ideation and attempts among ALHIV [
8
–
11
].
Similar mental health challenges have also been reported among adults living with HIV
in many different settings globally [
48
,
49
]. What the current study adds to the existing
literature is the understanding of these adolescents’ specific settings and situations. These
include living with their parents and siblings, or extended family members, in shared
housing, attending school, and engaging with various peer groups on a daily basis, which
significantly shaped or influenced their experiences of living with HIV, their emotions,
their mental health, and their social relationships in ways that differ notably from adults
living with HIV [
50
]. For instance, the particular settings and situations they were in
heightened the challenges of concealing their HIV status from parents and peers. This, in
turn, led to increased anxiety and fear regarding the potential for others to uncover infor-
mation about their health condition or HIV status. The findings highlight the importance

Int. J. Environ. Res. Public Health 2025,22, 83 12 of 17
of targeted mental health interventions and activities for ALHIV in the Indonesian context,
which are currently lacking, to facilitate their emotional regulation and self-acceptance,
enhance psychological resilience, and equip them with emotion-focused strategies to cope
with mental health challenges [
7
,
40
,
51
]. Evidence from other contexts has shown that
mental health interventions are effective in improving the mental health conditions of
ALHIV [
52
]. Similarly, the WHO has suggested that such interventions can strengthen the
mental health of these adolescents and lead to improvements in their overall physical and
health conditions [53].
This study also highlights a range of family-related factors that contributed to the
mental health challenges faced by these adolescents, which have not been reported in previ-
ous studies [
19
,
22
,
23
,
28
]. The dynamics within families of adolescents were a critical factor
influencing mental health. Fractured family homes, family conflict, and the subsequent
impact on the mental health of adolescents show the importance of familial relationships
in shaping emotional responses to the challenges of living with HIV [
54
]. Similarly, the
absence of parental support, due to loss or unacceptance of their HIV status by parents,
and non-disclosure of HIV status to parents left them feeling isolated and without the
appropriate emotional resources required to cope with the challenges associated with HIV.
For some adolescents, the lack of parental acceptance and non-disclosure of HIV status
created an unsupportive environment for child-parent open dialogue about HIV. Parents
play vital roles in their children’s lives and can be a significant source of emotional support
by offering encouragement, expressing affection and admiration, and fostering feelings of
safety, which can enable them to deal with various psychological distresses [
55
,
56
]. Some
studies have reported that parental and familial support positively impacts individuals,
particularly children living with HIV, and enhances their engagement and retention in HIV
treatment and care [
54
,
57
]. Therefore, for some adolescents in this study, the absence of
parental support not only exacerbated the mental health challenges they faced but could
also hinder their ability to cope effectively with life challenges in general. Some adolescents
appeared to intend to conceal their HIV status from their parents and experienced diffi-
culties in relation to that due to their specific condition of living with parents in sharing
housing. Given they were still under parental support, interventions that promote open
communication between adolescents and parents about HIV status are essential. Such
interventions could increase acceptance of the HIV status among adolescents, parents, and
family members, potentially leading to the provision of crucial support from parents, wider
family members, and others. Mental health interventions aimed at strengthening relation-
ships and communication between parents/caregivers and adolescents have been reported
to be effective in bringing about positive changes in the mental health and wellbeing of
both ALHIV and their caregivers/parents [58].
This study also highlights stigma and discrimination as significant influencing factors
for the mental health challenges faced by ALHIV. The perceived, anticipated, and enacted
stigmas that these adolescents were aware of and experiencing highlight the societal
attitudes towards HIV that they had to navigate, which were significant drivers of the
mental health issues they encountered. Although the association between HIV stigma,
discrimination, and mental health issues have been reported in previous studies with
ALHIV [
19
,
23
,
59
,
60
] and adults living with HIV in Indonesia and globally [
35
,
36
,
61
,
62
],
the current findings present the adolescents’ specific family and school environments that
shaped and influenced their awareness and experience of HIV stigma, discrimination, and
subsequent mental health challenges. Their experiences of stigma and discrimination also
hindered their access to education and social integration, seemingly creating a cycle of
disadvantage that reinforced their sense of isolation and contributed to a decline in mental
health. Additionally, it can be argued that the Indonesian context, where HIV and PLHIV

Int. J. Environ. Res. Public Health 2025,22, 83 13 of 17
are highly stigmatized within families and communities [
35
,
36
], seems to play a pivotal
role in influencing their emotions, mental health, social relationships, and behaviors. Our
findings indicate the importance of HIV-related health promotion interventions within
school settings to enhance the knowledge of students and teachers regarding HIV, to reduce
stigma, and to support the acceptance of ALHIV [
63
–
65
]. Such interventions can also be
beneficial in reducing or preventing stigma and promoting inclusion within educational or
school settings.
Limitations and Strengths of the Study
The results of this research must be interpreted with caution due to some limitations.
The use of a snowball sampling technique, which began with the dissemination of study
information sheets through receptionists and an information board at a healthcare facility
providing HIV care services and via a WhatsApp group for adolescents living with HIV,
may have introduced a bias by recruiting only ALHIV who shared similar characteristics.
This included individuals who had been on HIV treatment and were part of networks of
adolescents living with HIV. Consequently, ALHIV who were not part of these networks,
and who may have had different experiences and life stories, were not included. This also
means that the diversity of the recruited participants is limited. Therefore, the findings
reflect the specific experiences of the participants, which may not be applicable to other
ALHIV with different characteristics. Despite these limitations, the strength of the study
lies in its being the first qualitative investigation to explore mental health challenges
and contributing factors among ALHIV in the Indonesian context [
11
]. As such, the
findings provide valuable insights that can inform HIV policies and interventions aimed
at addressing the needs and challenges faced by ALHIV in the study setting, as well as in
Indonesia and beyond.
5. Conclusions
This study presents complex and multifaceted mental health challenges and their
contributing factors among ALHIV in Yogyakarta, Indonesia. It demonstrates that their HIV-
positive status, intertwined with family-related factors, stigma, and discrimination, plays
significant roles in influencing participants’ mental health conditions. Given the Indonesian
context where interventions to address HIV impact among ALHIV are lacking, this study’s
findings indicate a need for tailored and targeted intervention programs, as previously
mentioned, to support mental health, reduce stigma, and promote child-parent open
communication on HIV and HIV disclosure in safe ways for ALHIV. Future quantitative
studies involving a large number of ALHIV, in order to investigate the complexity of mental
health challenges they faced and the broader contributing factors at individual, familial,
and societal levels in the context of Indonesia, are recommended, as their results could be
generalized to other population groups and could better inform the development of HIV
policies and intervention programs to support their mental health, address reduce stigma,
and create a safe environment for HIV communication and disclosure.
Supplementary Materials: The following supporting information can be downloaded at: https:
//www.mdpi.com/article/10.3390/ijerph22010083/s1, File S1. Interview Guide.
Author Contributions: P.R.W. was involved in conceptualization, developing the methodology,
supervision, structuring the original draft of the paper, and reviewing and editing the paper critically
for important intellectual content. R.P. was involved in project administration and investigation. A.R.
and B.S.G. were involved in reviewing and editing the paper critically for important intellectual
content. N.K.F. was involved in conceptualization, developing the methodology, conducting formal
analysis, writing the original draft of the paper, and reviewing and editing the paper critically

Int. J. Environ. Res. Public Health 2025,22, 83 14 of 17
for important intellectual content. All authors have read and agreed to the published version of
the manuscript.
Funding: This research received no external funding.
Institutional Review Board Statement: The study was conducted according to the guide-
lines of the Declaration of Helsinki and was approved by Human Research Ethics Committee,
Torrens University Australia, Australia (No. 0214, 01/12/2022) and Medical and Health Re-
search Ethics Committee, Krida Wacana Christian University, Indonesia (No. SLKE: 1327/SLKE-
IM/UKKW/FKIK/KE/VIII/2022).
Informed Consent Statement: Informed consent was obtained from all participants involved in the
study and from parents or caregivers of participants under 18 years.
Data Availability Statement: The data presented in this study are available on request from the
corresponding author. The data are not publicly available due to restrictions set by the human
research ethics committee.
Acknowledgments: We would like to thank the participants who voluntarily spent their time to take
part in the interview and provided us with valuable information.
Conflicts of Interest: The authors declared no conflicts of interest.
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