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Abstract

Background

Human immunodeficiency virus (HIV) stigma has detrimental impacts on HIV care outcomes, mental health, and psychosocial well-being. Adolescents living with HIV (ALWH) in Malawi experience HIV stigma as gossip, insults, and physical distancing, contributing to decreased HIV care engagement and mental health issues including depression, substance use disorders, and suicidality. To inform future stigma-reduction interventions for this vulnerable population, we investigate how HIV stigma impacts an ALWH's ability to meaningfully participate in their social roles and responsibilities.

Methods

This qualitative study recruited 68 participants from three government healthcare facilities in Lilongwe, Malawi. Our study sample consisted of 13 ALWH aged 13–19 years who screened positive for depressive symptoms on the Beck Depression Inventory-II with a score ≥13 (5 females, 8 males) and 55 stakeholders aged 13–54 years (38 females, 17 males). Guided by the What Matters Most Framework, we conducted 13 in-depth interviews and 10 focus group discussions with ALWH, adolescent peers without HIV, caregivers, teachers, HIV care providers, and mental health providers to examine culturally relevant manifestations of HIV stigma and its impact on ALWH's ability to fulfill socially expected roles. We organized data into four life domains–home, community, school, healthcare—which we analyzed to understand how stigma hinders social role performance, to assess how role fulfillment shapes stigma, and to identify strategies to reduce stigma.

Results

ALWH identified their most salient social roles as being a family member, church member, student, friend, and active participant in one's healthcare. In each life domain, HIV stigma negatively impacted an ALWH's ability to meaningfully engage in their prescribed roles, resulting in ostracization from family and friends, displacement from one's home or school, disengagement from church, poor school performance and attendance, and reduced retention in HIV care. Key recommendations from study participants included engagement and collaboration with caregivers, increasing counseling services for ALWH with peer support, promoting community awareness and education, and redress systems for acts of stigmatization.

Conclusions

This study revealed that HIV stigma disrupts an ALWH's ability to fulfill key social roles in home, community, school, and healthcare settings. Stigmatization from caregivers within the home has the most detrimental impact on ALWH, identifying caregivers as critical part of stigma-reduction efforts. To effectively address stigma across all life domains, targeted stigma-reduction is needed, particularly through specialized counseling that addresses the unique aspects of ALWH personhood, and community education to disseminate accurate knowledge.

Keywords

stigma adolescents Malawi interventions

Introduction

Human immunodeficiency virus (HIV) remains a global public health issue, especially in Sub-Saharan Africa (SSA), where approximately 38.4 million people live with HIV as of 2021.^1,2 Within SSA, Malawi has been significantly burdened by HIV, which continues to be a critical public health issue.³ In 2023, there were approximately 980,000 people living with HIV in Malawi, with adolescents bearing a considerable burden of the disease.³

Beyond the inherent challenges of managing a life-long chronic disease, adolescents living with HIV (ALWH) also struggle to cope with HIV stigma.^4,5 HIV stigma refers to a deeply discrediting attribute that results in exclusion from the privileges and social acceptance that are afforded to those without HIV.^6–8 ALWH may face different types of stigma including experienced stigma (eg, actual experiences of discrimination), anticipated stigma (eg, fear of how classmates may discriminate against them), or internalized stigma (eg, negative self-worth due to living with HIV), across multiple socio-ecological levels.⁹

As stigma is a well-documented deterrent of HIV care, ALWH who experience stigma often have worse HIV care outcomes, such as decreased appointment attendance, suboptimal adherence to antiretroviral therapy (ART), and increased risk of progression to acquired immunodeficiency syndrome (AIDS).^10,11 ALWH also report worsened mental health due to stigma, and struggle with substance abuse, depression, anxiety, and suicidality.^12,13 The consequences of stigma for Malawian ALWH require urgent attention, especially as AIDS and suicide remain leading causes of death among youth in SSA.^14,15

For these reasons, stigma is a critical area of intervention within the context of HIV care. Among many frameworks used to study stigma,^9,^16–18 the What Matters Most (WMM). Framework is well-established in identifying culturally salient manifestations of stigma for a specific population.^19–21 WMM is an interdisciplinary framework that integrates psychological processes,²² structural discrimination,²³ and anthropological perspectives²⁴ to conceptualize the experience of stigma. Specifically, WMM theory states that “stigma is felt most acutely when people are not able to participate in the activities that ‘matter most’ and determine ‘personhood’ in their culture,” such as employment, marriage, or caring for others.⁶ WMM theory aims to understand how stigma threatens one's ability to attain personhood, or core cultural capabilities, within their local world and particular life stage. WMM has been used to investigate stigma faced by specific populations and to design culturally appropriate stigma-reduction interventions. For example, WMM has been studied among pregnant women in Botswana, where a woman's personhood is largely defined by being a “good mother”.^20,25,26 Since HIV stigma threatens one's ability to be a good mother, this cultural notion informed the development of a targeted intervention for pregnant women living with HIV in Botswana.^20,25,26 The intervention focused on psychoeducation, challenging inaccurate stereotypes, and coping responses to address stigma and help restore societal respect for this population.²⁶

While stigma poses numerous psychosocial and health-related challenges for ALWH in Malawi,^4,5,^27–31 less is known about its culturally specific manifestations that may threaten their personhood. To inform the development of a stigma-reduction intervention tailored to ALWH's key concerns, this study aims to identify “what matters most” for an ALWH—the socially valued roles and responsibilities essential for social belonging during adolescence. Building on an existing counseling and peer support intervention³² for ALWH in Malawi, this work addresses stigma as a major barrier to mental health and HIV care engagement among ALWH.

Guided by the WMM Framework, we conducted qualitative interviews to examine culturally salient manifestations of stigma for ALWH in Malawi in four life domains: home, community, school, and healthcare. We investigate how stigma disrupts role fulfillment, explore how fulfilling these roles may buffer against stigma, and propose multilevel strategies from diverse stakeholders to reduce stigma.

Methods

Study Context and Design

This study utilized a qualitative design³³ to apply the WMM framework for ALWH. The study was conducted under a parent study, HIV Engagement and Adolescent Depression Support (HEADS-UP), which focused on augmenting the Friendship Bench (a counseling-based problem-solving intervention) with group-based peer support.^34,35 The reporting of this study conforms to the ‘Consolidated criteria for reporting qualitative research’ (COREQ) guidelines (Supplementary Appendix 1).³⁶

Study Sites

The study was conducted at Area 18, Area 25, and Kawale Health Centers, all periurban government primary healthcare facilities in Lilongwe, Malawi. The facilities were similar in terms of staffing personnel, services provided, and ALWH patient volume. At each clinic, there are quarterly weekend “Teen Clubs” or dedicated youth-friendly HIV clinics that provide ART refills, viral load testing, psychosocial support, and education on HIV transmission, nutrition, and sexual and reproductive health.³⁷ Teen Clubs are divided into two age groups (10–14 and 15–19 years) for further specification of age-appropriate education and activities.

Study Sample and Recruitment

Recruitment and data collection began in October 2023 and ended in January 2024. Our target sample size was 15 in-depth interviews (IDIs) with ALWH and two focus group discussions (FGDs) per five stakeholder populations (10 FGDs total) with six participants per FGD. We planned to conduct 15 IDIs with ALWH but completed 13 IDIs due to communication and scheduling difficulties with ALWH. For the FGDs, we completed the target of two FGDs per stratum. Due to communication difficulties, we recruited 10 caregivers total (instead of 12). Due to the limited number of employed mental health staff, we recruited nine mental health providers (instead of 12).

Based on methodological studies which found that 9–17 IDIs per stratum³⁸ and 2 FGDs per stratum³⁹ captured a comprehensive understanding of themes, we expected to reach data saturation with our sample size, even though we did not reach the target sample size.

Adolescent Participants Living with HIV

Purposive sampling was used to recruit ALWH from Teen Clubs during October 2023. Research assistants (RAs) and clinic staff screened ALWH for depressive symptoms using the Chichewa version of the Beck Depression Inventory-II (BDI-II).^40,41 Eligibility criteria for ALWH were: (1) aged 13–19; (2) diagnosed with HIV; and (3) score ≥ 13 on the BDI-II. There were no specific exclusion criteria for ALWH. The BDI-II ranges from 0 to 63, with scores 0–13 indicating minimal depressive symptoms; scores 14–19 being mild; scores 20–28 being moderate; and scores 29–63 being severe.⁴⁰ We selected the BDI-II threshold based on validation work for ALWH in Malawi.³⁰ The cutoff of ≥13 shows 80% sensitivity to detect depression, which is the standard for depression screening in Malawi,³⁰ and is the threshold used in the parent study.³⁴

Eligible ALWH were invited to participate in interviews within two weeks of depressive symptom screening.

Any ALWH who reported elevated depressive symptoms or suicidal ideation received standard-of-care at the study sites, meaning they were referred to a psychosocial counselor and/or nurse the same day, regardless of their enrollment in the study.

Any ALWH who disclosed suicidal ideation underwent further assessment via the Tool for Assessment of Suicide Risk for Adolescents (TASR-A),^42,43 which identifies common risk factors of suicide, such as substance use, hopelessness, suicide plan, and access to lethal means. ALWH deemed at high risk of suicide created a safety plan with psychosocial counselors, with family members involvement at the counselor's discretion.

Stakeholder Participants

For a more holistic understanding of how stigma impacts WMM for ALWH, we sought the perspectives of stakeholders from key domains in the lives of ALWH. We purposively sampled stakeholders including (1) caregivers of ALWH, (2) adolescent peers without HIV, (3) schoolteachers of adolescents, (4) HIV care providers, and (5) mental health providers.

Caregivers were recruited during the consent process with ALWH minors or were invited by ALWH aged 18–19. Eligibility criteria for caregivers included: (1) aged 18 and above (2) a trusted individual who was aware of their ALWH's HIV status; and (3) play a major role in caregiving for their ALWH. ALWH were asked to invite trusted adults who were aware of their HIV status and had a significant role in caregiving.

Adolescent peers were recruited from visits in the clinic's Outpatient Department. RAs recruited adolescent peers without HIV and without depressive symptoms who presented at the clinic for non-HIV healthcare-related needs. Eligibility criteria for adolescent peers included: (1) aged 13–19; (2) no prior HIV diagnosis; and (3) negative depression screen on the BDI-II (scores <13).

Schoolteachers were recruited via study flyers shared by adolescent peers. RAs gave adolescent peers flyers to distribute to their teachers. Teachers who were interested in participating in the study contacted the RAs by phone to express interest. Adolescent peers were used to recruit teachers to protect ALWH from unintentional HIV status disclosure. Eligibility criteria for teachers included: (1) age 18 and above; (2) teacher for students aged 13–19; and (3) employed at school within the clinic's catchment areas.

HIV care providers were government employees working at the study clinics, such as ART coordinators, nurses, or clinic leaders. Eligibility criteria for HIV care providers included: (1) age 18 and above; (2) government employees working at the clinics; and (3) providing HIV care in their role.

Mental health providers consisted of psychiatric nurses, psychosocial counselors, or trained Friendship Bench counselors. Eligibility criteria for mental health care providers included: (1) age 18 and above; and (2) providing mental health care at clinic sites. The research coordinator contacted and invited eligible HIV and mental health care providers to participate in the study. For all stakeholder groups, there was no specific exclusion criteria beyond needing to meet the eligibility criteria.

Data Collection

Among our total sample of 68 participants, we conducted 13 IDIs with ALWH and 10 FGDs with stakeholders, which allowed us to capture a range of varied experiences and perspectives to inform how HIV stigma impacts an ALWH's ability to participate in their social roles and responsibilities. Semi-structured interview guides were developed to explore experiences of HIV stigma, depression stigma, intersectional stigma (from HIV and depression), and coping strategies (Supplementary Appendices 2 and 3). IDIs and FGDs were guided by the WMM theory,^20,44 and probed about adolescent roles and responsibilities, and how stigma may hinder an ALWH's ability to achieve full personhood in prominent domains of their life. IDIs aimed to elucidate the unique experiences of stigma from the ALWH's insider perspective. FGDs were conducted to understand the experiences of stigma from key stakeholder perspectives, including opinions from possible perpetrators of stigma.

During the data collection period, IDI guides underwent four revisions through an iterative process based on participant perception, feedback from the RAs, and relevance of the question. The content of the final guide did not differ significantly from the original version and thus did not impact data consistency or saturation. IDIs and FGDs were conducted by RAs in a private research room at the clinic and lasted between 60 and 115 minutes. IDIs and FGDs were conducted in Chichewa, the primary national language of Malawi, digitally recorded, and then translated into English by RAs fluent in both languages. All transcripts were reviewed by the interviewer for translation and interpretation accuracy. The privacy and confidentiality of participants’ information was maintained by the research team throughout data collection.

Data Analysis

Informed by thematic analysis, data analysis was performed through an iterative and collaborative process that involved four steps: (1) reading transcripts for content, (2) deductive and inductive coding, (3) data display to identify emerging themes, and (4) interpretation of themes.⁴⁵ The analysis consisted of both ALWH and stakeholder data, which were coded together and both utilized in the development of themes. After careful reading of resulting transcripts, one team member drafted an initial codebook in English. The majority of codes were deductive, and were created from interview guides, WMM theory, literature review, and prior experience analyzing stigma data from ALWH in Malawi using The Health Stigma and Discrimination Framework.^4,9 Inductive codes were iteratively added based on emerging ideas and relevant topics raised in both IDIs and FGDs. Examples of inductive codes include additional stereotypes, life domains, issues of disclosure, and vulnerability factors. Inductive codes were organized under subthemes in the codebook based on content. Data saturation was attained when no new codes or themes were identified, indicating that participant perspectives were appropriately captured in the dataset.

Two members of the research team applied this initial codebook to two transcripts and conducted line-by-line analysis. This process was repeated two more times until coder agreement was reached. The full coding team consisted of five team members who used the refined codebook to conduct line-by-line coding of a single transcript in Microsoft Word during group meetings. This was done to compare differences in interpretation, and consensus was reached through discussion. This process was repeated twice more until a final codebook was established.

With the final codebook, all IDI and FGD transcripts were double coded using NVivo 14 software.^46,47 To examine WMM to ALWH, we conducted thematic analysis⁴⁸ on all code reports related to daily activities and roles of ALWH, HIV stigma manifestations in four life domains (home, community, school, healthcare), protective factors against stigma, and recommendations for future interventions. Themes were derived from the coded data collaboratively, with two team members reviewing the aforementioned code reports, noting relevant themes and patterns, and discussing interpretations. Drawing from WMM Theory and the Health Stigma and Discrimination Framework,⁹ themes were organized hierarchically. Ultimately, we structured the analysis using “life domains,” which were raised by ALWH participants as important aspects of their life, and in keeping with WMM Theory, were conceptualized as key facets of their “local world.”

Similar data were collected from key stakeholders to understand how stigma impacts WMM for ALWH. Themes were analyzed across the full dataset, and we noted consistency in perspectives among the different participant groups. Rigor was maintained through investigator triangulation with multiple members of the research team reviewing the codebook and interpretations.⁴⁹ Further, to ensure dependability of the findings,⁴⁹ we evaluated intercoder reliability using the kappa statistic (calculated by NVivo), with kappa > 0.7 indicating substantial agreement between coders.⁵⁰ For transcripts with kappa < 0.7, the coding team resolved differences via line-by-line comparison until consensus was reached. Finally, memos were completed to highlight key findings from each transcript, and from key themes which informed the early stages of manuscript writing.

Positionality Statement: As a research team, we acknowledge our backgrounds and identities may inform our interpretation and analysis. Our research team included local researchers native to Malawi and visiting researchers from foreign institutions, of varied races, ethnicities, and genders who offered diverse perspectives, enriching our analysis. We acknowledge the power dynamics inherent in global research which we strove to address through regular team meetings and engaging in collaborative data analysis and writing.

Results

Participant Characteristics

We enrolled 68 participants total for this study, with a total of 13 IDIs with ALWH and 10 FGDs (2 FGDs per stakeholder group). Descriptive statistics were conducted to understand characteristics among our sample.

ALWH: We screened all ALWH (age 13–19) attending Teen Club meetings (five total) in October 2023 (n = 118). Among those screened, 22% screened positive for depression (BDI-II ≥ 13; n = 26) and 6.8% endorsed suicidal ideation (n = 8). Among those eligible for the study, 50% (n = 13) were enrolled and participated in a study interview.

ALWH participants (n = 13) included 5 females and 8 males with a mean age of 16.3 years. Mean BDI-II score was 18.3, ranging from 13 to 26, and with females having a higher mean score (19.6), compared to males (17.5). Three participants disclosed suicidal ideation, two via the BDI-II screening, and one during the IDI. Most participants (n = 11) indicated mother-to-child (MTCT) as their mode of HIV acquisition, with one reporting accidental exposure and one being unsure how they acquired HIV (Table 1).

Table 1.

Characteristics of ALWH Participants.

n	TotalALWH(n = 13)	Female ALWH(n = 5)	Male ALWH(n = 8)
Age (years), mean	16.3	17.0	15.9
13–15	6	2	4
16–19	7	3	4
Education
Primary	10	4	6
Secondary	3	1	2
Both biological parents alive	6	3	3
BDI-II^a score (mean)	18.3	19.6	17.5
Suicidal ideation	3	1	2
BDI-II disclosure	2	1	1
Interview disclosure	1	0	1
Self-reported HIV Transmission
MTCT^b	11	3	8
Accidental exposure	1	1	0
Doesn’t know	1	1	0

Beck Depression Inventory-II.

Mother-to-child transmission.

Stakeholders: Demographics of the five stakeholder groups are depicted in Table 2.

Table 2.

Characteristics of Stakeholder Participants.

n	Adolescent peers without HIV(n = 12)	School teachers(n = 12)	Caregivers (n = 10)	HIV care providers (n = 12)	Mental health providers (n = 9)
Gender
Female	6	10	8	9	5
Male	6	2	2	3	4
Age (years), mean	16	39	46	39	38
Education
None	0	0	0	1	0
Primary	6	0	6	0	0
Secondary	6	0	4	2	5
Postsecondary	0	12	0	9	4

Of note, relationships of caregivers to ALWH included mother (n = 6), grandfather (n = 1), aunt (n = 1), uncle (n = 1), and sister (n = 1). Occupations of HIV care providers included nurse manager, clinician, ART coordinator, midwife, data officer, and community health worker. Occupations of mental health providers included clinician, psychosocial counselor, and community health worker.

Part 1: Domains Central to Personhood for ALWH

In this section, we organize the results into four key domains salient in an ALWH's life: home, community, school, and healthcare. In each domain, we present the themes related to: (1) roles and responsibilities that are central to defining personhood in their local context (Figure 1), (2) key manifestations of HIV stigma that are specific to each domain, and (3) how stigma disrupts an ALWH's ability to participate in activities that matter most to them (Figure 2).

Figure 1.

Roles Central to Personhood by Domain.

Figure 2.

HIV Stigma Disrupts Role Fulfillment in All Domains.

Important Notes on Language:

Unless otherwise specified, our use of the term “stigma” refers to “HIV stigma”.

In the data that follows, we describe stigma perpetrated by parental figures. Participants often did not specify who these parental figures were, but may include biological parents, stepparents, guardians, or other adult relatives. If the individual has not been specified, we use “parent” but recognize it may be any of the aforementioned individuals who are responsible for the ALWH's livelihood.

Home

Roles

For most ALWH, being a member of one's family was central to their identity. Most ALWH reported that their most important role in life was being a child and sibling within the home. Nearly all ALWH stated that contributing to household chores was their primary responsibility. Some ALWH described additional responsibilities in the home, including a financial responsibility (eg, helping the family unit earn money through piecework or selling goods in the market), supporting others’ healthcare needs (eg, escorting family members to appointments), and stepping in as head of the family (eg, assuming leadership and caregiver responsibilities).

Key HIV Stigma Manifestations

Participants from all groups discussed experiencing stigmatizing behaviors in the home, namely physical and social isolation. Parents often instituted rules that prevented ALWH from participating in household chores, and eating, sleeping, bathing, and socializing with family members who do not have HIV.

ALWH reported experienced stigma in the form of significant maltreatment, abuse, and neglect, which was more commonly perpetrated by stepparents. Participants noted a societal belief that ALWH are a poor financial investment due to their presumed premature mortality from HIV. In a society with widespread poverty, parents are forced to make difficult decisions about finances and resource allocation, and may deprive ALWH of basic resources, including food and clothes, as they are presumed to have a shortened lifespan. Parents also interfered with education, by refusing to pay school fees or provide school materials. Participants’ experiences of stigma were shaped not only by interpersonal interactions, but also by structural factors, particularly economic hardship and limited public health education around HIV transmission and prognosis.

ALWH also frequently experienced verbal abuse from family members, making them the “laughingstock” of the family. A caregiver explained how an ALWH may be subject to severe experienced stigma through insults during family disagreements:

When people realized that my nephew was HIV positive, his siblings would insult my nephew whenever they had a disagreement. For example, they say, “We cannot quarrel with you, you are already dead,” or “We cannot fight you because you will end up dying in our hands.” When my nephew complained about this to his grandma, she told him to leave his parents’ house and start staying with her. So, there are some people who can destroy a child's life and some who can take care of the child's life. The people you stay with can often wrong you based on what they say. (Male caregiver, age 22)

This quote depicts verbal abuse that an ALWH may experience, often through insults referencing an ALWH's imminent death from HIV. Such experienced stigma through verbal abuse reinforces false stereotypes about an ALWH's prognosis, engenders uncertainty and hopelessness about one's future, and contributes to social isolation. The abuse may be so severe that an ALWH must leave their home in search of a more accepting living environment.

HIV Stigma Disrupts WMM

Experiencing stigma within the home appears to be the most detrimental for an ALWH's overall well-being, as it disintegrates their most valued role as a member of their family and threatens their personhood as a child and sibling.

First, because ALWH are frequently not allowed to participate in household chores out of fear of HIV transmission, they are unable to fulfill a primary responsibility of household members, resulting in segregation from their family.

Second, ALWH described being prohibited from socializing with their siblings and being ostracized from their family at large. Some ALWH even explained that their parents would enact stigma by spreading misinformation to their siblings about their status as a blood relative due to their difference in HIV status. As told by one ALWH:

A parent may be the one that's leading the discrimination by telling your siblings that you cannot be related because you have HIV. Your relatives start seeing you as an unimportant person and won’t respond when you talk to them. You just become lonely. (Female ALWH, age 18)

In this example, a guardian enacts discrimination by spreading misinformation about an ALWH's status as a biological family member. This effectively disowns an ALWH as a member of the family, which is distressing for ALWH who primarily identify with their family in this developmental stage.

Lastly, a theme of displacement from one's permanent home was prominent in the data. Participants shared stories of ALWH suffering abuse, often perpetrated by stepparents, in an attempt for guardians to preserve their social standing, even at the cost of a child's well-being. Experiences of abuse or neglect often resulted in physical relocation of ALWH to escape their home environment.

Of note, participants discussed that caregivers are highly influential figures in an ALWH's life, and stigmatization in the home may be the most detrimental for ALWH. Caregivers and ALWH participants explained that parents serve as role models, and their treatment towards ALWH, whether negative or positive, is often modeled by siblings, other family members, and community members at large. One mother to an ALWH explained:

In a family of three children where one has HIV, it is the responsibility of the parent to make sure that they are not treated differently. I pointed out earlier that as a parent, you must speak to both parties in the family— the children without HIV and the child with HIV. If a parent is at the forefront of differentiating the treatment of the children [based on HIV status], outsiders also follow that. On the other hand, it is difficult for an outsider to do that if there is unity within the family. If you would come to my house, you wouldn’t notice any difference. I love the child with HIV very much and even people know that. The child is also aware of my love. (Female caregiver, age 50)

This caregiver's account speaks to the fact that parents are situated in a leadership role, and their treatment towards their child may influence if their ALWH experiences discrimination both within and beyond the home. In addition to shaping the home environment, parents exert influence over other life domains, such as healthcare and school, and they may harm ALWH by preventing them from taking ARTs or attending school.

Community

Roles

Participants identified being a church member as their most important role in the community, and the most important role after familial roles. One ALWH described the roles of a good church member:

Paying offerings, when the pastor is calling for volunteers to come in front you have to volunteer and observe all the doctrines. (Male ALWH, age 18)

Other responsibilities of a good church member included attending services, praying, singing in the choir, and participating in church tasks. Participants also cited being a friend among their most important role in the community, which includes socializing, playing sports (football and netball), supporting others through difficult times, and resolving conflicts.

Key HIV Stigma Manifestations

Participants from all groups discussed that insults, and physical and social isolation were common manifestations of experienced stigma at the community level. ALWH were often excluded from socializing with people without HIV, with adults often prohibiting these interactions. In public areas, people without HIV would take measures to distance themselves from ALWH, such as by not sharing water, refusing ALWH to select food items in the market, and vacating the borehole when an ALWH is drawing water.

Participants also cited gossip as one of the most detrimental manifestations of experienced stigma within the community. Many participants recounted stories of a community member intentionally disclosing their HIV status in a public setting, with an aim to seek revenge, insult, or warn a romantic partner of potential danger.

One ALWH described an instance where he was arguing with a community member and as an act of revenge, this person publicly revealed their HIV status:

She said that she has been waiting for the opportunity to insult me about my HIV status. I was amidst so many people, and she started shouting at me saying that if I don’t take ART treatment, I will faint. I did not like how she insulted me… I had so many friends, including older girls, but now they all stopped chatting with me. They no longer come to my house. When I go to their homes, they always give me excuses that they are out. (Male ALWH, age 16)

This ALWH reflects how this intentionally harmful act had serious consequences for his reputation and social standing in the community. With his HIV status revealed publicly, he is victim to further stigmatization, both covertly and overtly, which will likely impact his future friendships and romantic prospects.

HIV Stigma Disrupts WMM

Stigma experienced in the community threatens an ALWH's ability to fulfill their roles as church member and friend.

Participants spoke about disengagement from church as a long-term impact of stigmatization. Participants explained that ALWH may stop attending church due to mocking and active exclusion from church activities. Additionally, ALWH expressed anticipated stigma, fearing the possibility of stigma at church, which could affect service attendance.

In the example that follows, an ALWH explains how mocking in church settings may demotivate their church attendance:

At church, people can be mocking you saying, “This person is prayerful and yet he or she has HIV, why can’t he or she just pray for the HIV to go away, so that he or she can stop taking medicine.” …. Because of this, the person can just stop going to church. (Female ALWH, age 19)

Furthermore, some participants cited that over time, they may lose faith in God altogether, by contemplating why God is not helping them overcome HIV or protecting them from mistreatment in the community.

Additionally, participants discussed that stigma in the community can result in the loss of old or future friendships. Participants noted that these lost friendships could be platonic or romantic, and occurred after HIV status disclosure, even if presumed, which resulted in fear of HIV transmission. One mental health provider shared:

My colleague talked about a boy who had sores and when he went out to play, his friends were telling him “you are a sickling,” hence you cannot play. With regards to this, if the adolescent's talent was football, this would destroy his talent and the adolescent wouldn’t have the desire to go and play with friends, fearing that they will be insulting him saying he is a sickling. (Male psychosocial counselor, age 27)

As detailed by this participant, adolescent peers may presume one's HIV status due to bodily sores, resulting in insults (experienced stigma) directed towards the ALWH. Ultimately, the ALWH's isolation and loss of friendships is multi-factorial: both due to the peer's distancing, and ALWH's self-distancing due to anticipated stigma and possibly from experiencing depression.

School

Roles

Many ALWH described being a good student and friend to classmates as important roles in school. ALWH engaged in these roles by having good school attendance, doing their homework, reading, and spending time with peers.

Key HIV Stigma Manifestations

Within the school setting, several ALWH experienced stigma from peers in the form of bullying, insults, and loss of friendships after disclosure of their HIV status. ALWH suffered socially due to physical isolation from peers as they refused to shake hands, eat with, or even talk to ALWH. This stigmatizing behavior was also present among teachers, as some teachers refused to grade assignments from ALWH unless they washed their hands first, reinforcing the fear of HIV transmission via casual contact with ALWH. One ALWH recounted how they were forced to transfer schools after disclosing their status to a gossiping teacher:

I once got sick and I was failing to go to school. When I got better, I returned to school and was told that I should repeat the class because I had missed exams. I was asked why I wasn’t going to school. Since I trusted my teacher, I told them what happened. After some days, the teacher told the issue to the headteacher and the gossip spread. That drew me back and I decided not to go back to that school because I felt that people will be talking about me… I was told that I can sue the teacher since it's wrong for a teacher to tell others about your status. I decided not to sue, but I transferred schools. It hurt me but I accepted that that's how life is. (Female ALWH, age 18)

In this example, an ALWH's sensitive information regarding their HIV status became a point of gossip throughout her school, ultimately causing her to deal with the additional stress of transferring to a different school.

While some ALWH did not experience stigma firsthand, ALWH often anticipated and deeply feared the discrimination they would experience if their HIV status were disclosed to peers and teachers. Their anticipatory fears were not unfounded as the curriculum in schools often perpetuated stigmatizing stereotypes that ALWH are near death and have no future. As told by one ART provider:

I feel like Malawi's public education system introduced a certain mentality. I recall that when I was in school we used to sing a certain song “AIDS is a killer”. I don’t know if they have changed their syllabus around HIV education. If they change the syllabus, adolescents may find it easier to disclose their status. Some adolescents keep their HIV status as private as possible because of this syllabus. (Female ART coordinator, age 39)

Other healthcare providers and some teachers also noted the stigmatizing content in school curriculums as a contributor to persistent stigmatizing attitudes and behaviors towards ALWH.

HIV Stigma Disrupts WMM

Experiencing stigma in school settings significantly hampered ALWH's ability to fulfill their role of being a good student. Several ALWH found it difficult to focus on school assignments, participate in class discussions, and perform well due to the considerable time and energy spent keeping their HIV status secret to avoid stigma. One ALWH described how anticipation of stigma can interfere with class participation:

When it comes to school, you cannot be working hard in class. At school you might not be able to speak frequently because you might feel that your friends will be laughing at you because of HIV. For example, if you want to answer a question, the friends can be saying that a person with HIV shouldn’t be talking among people without HIV. (Male ALWH, age 18)

In everyday life, ALWH may be less involved in class discussions due to the anticipated stigma from their peers. On a broader psychosocial level, many ALWH also described that societal stereotypes around their presumed premature mortality limited their ability to envision and work towards their future careers. The demotivating nature of stigma caused many ALWH to have poor study habits, increased absenteeism, and, for some, to drop out of school completely. One psychosocial counselor shared how the burden of stigma caused an ALWH to drop out of tertiary education and turn to substance use:

We had one case of an adolescent that started visiting our clinic from a younger age, through secondary school and later on went to college. When the adolescent was at college, the adolescent was still coming to collect medicine from our clinic. Later on, he said that he experienced stigma while at school because people had realized that he was taking HIV medicine. This made him drop out of school and started drinking, later on he died. (Male psychosocial counselor, age 27)

In other examples, ALWH who experience stigma at school either transferred schools or dropped out entirely. However, in this more severe case, the ALWH turned to substances to cope with the stigma he experienced at school, which increased his risk of mortality.

Healthcare

Roles

Within the healthcare realm, ALWH shared their primary responsibility was to be an active participant in managing their HIV, by adhering to daily ARTs and attending clinic appointments. Most ALWH began their day by tending to personal hygiene and taking their daily ARTs before becoming busy with other responsibilities.

When I wake up in the morning, first of all I take my [ART] medications and wash my face. After that I sweep both inside and outside the house, draw one pail of drinking water, bathe and go to school. (Male ALWH, age 17)

For this ALWH, taking his ARTs was well integrated into his daily routine. Other ALWH in our sample followed a similar strategy of taking their ARTs as part of a routine, usually paired with self-care and hygiene activities, to ensure they remained adherent and healthy.

Key HIV Stigma Manifestations

In clinic settings, ALWH considered most healthcare workers (HCW) to have positive influences on their adherence to ART. However, some HCW were noted to have negative attitudes towards ALWH, assuming ALWH acquired HIV through promiscuous behaviors and gossiping about them in the clinic. Similarly, issues of privacy related to HIV status disclosure within the clinic setting were discussed by ALWH and key stakeholders. Clinic procedures require that ALWH carry pink cards to quickly signal their HIV status to HCWs. However, ALWH seen carrying pink cards at the ART clinic risked unintentional HIV status disclosure and increased vulnerability to stigma. In addition, one community health worker described the practice of ALWH having multiple health passports to prevent clinic staff from knowing their HIV status:

What I have discovered is that a lot of adolescents have different health passports. When they are sick, they get another book. This is done so that the healthcare workers shouldn’t know his or her status, if what he or she is suffering from at that particular time is not related to HIV. (Female community health worker, age 41)

The lack of privacy regarding sensitive health information was ultimately detrimental to the overall care that ALWH received, as HIV status is an important piece of one's health history that can impact treatment of other health issues. However, ALWH are reluctant to share their status to providers, which may comprise their overall care.

HIV Stigma Disrupts WMM

Stigma negatively impacted ALWH's abilities to manage their HIV and remain healthy, a responsibility that mattered to ALWH. Many ALWH stated their clinic attendance was reduced due to experienced stigma through gossip, insults, mocking, and the anticipation of stigma at the healthcare facility. ALWH also struggled with ART adherence due to the anticipation of stigma if they were seen taking ART, which could be an unintentional disclosure of their HIV status. One ALWH participant shared:

He said, “Why do I take medications daily?” He already knows why I take the medications, so he just wanted to laugh at me. I stayed one week without taking the medication, I had no interest in taking medication because I was sad. (Male ALWH, age 18)

After being mocked by a friend, this ALWH did not take his ART medication for an entire week. While this stigma experience did not occur directly within the healthcare setting, the consequences were detrimental to how this ALWH self-managed his HIV, increasing his risk of complications such as infections and HIV resistance.

Part 2: Role Fulfillment and Impact on HIV Stigma

The majority of participants suggested successful fulfillment of roles and responsibilities of WMM could protect ALWH against stigma. Generally, ALWH exhibiting good behaviors, such as respecting elders, being well-mannered, following advice, avoiding substance abuse, and being a likable person, were identified as ways that might decrease stigmatizing behaviors experienced by ALWH from community members. One participant explained the importance of an individual's actions in protecting against stigma:

A person actions finds himself or herself a place in other people's hearts. When the people see that person, they forget about his or her status and consider the person as equal to them. They can even share ideas with that person. This happens when a person has good behavior. (Female caregiver, age 53)

A few participants described participation in community activities, such as volunteering to lead a song at church, helped decrease stigma towards ALWH.

To explore how fulfilling roles might help ALWH overcome stigma, the interviewers used the example of “being a good student” to prompt discussion on how good behavior may change societal perceptions or influence stigma. Fulfilling the role of a good student primarily protected ALWH against stigma in two ways. First, ALWH who are good students are viewed as future-oriented, with the potential to contribute to society. Second, ALWH who are good students seemed to have better social inclusion because they were useful study partners to peers, fostering collaboration and friendship. A counselor provided the following example:

By being a good student, it means you have potential. So, people would like to associate with you because of the potential in you. Likely, you attract a lot of attention, people and support. On the other hand, it's very hard for the bad student to even perform in class and people will always relate it to HIV. (Male psychosocial counselor, age 27)

Many participants agreed that fulfilling the role of a good student motivates others to support ALWH and treat them well, regardless of their HIV status.

Despite most participants reporting that fulfilling roles protects against stigma, a minority of participants disagreed. These participants who disagreed felt that ALWH's fulfillment of roles could not sway the rigid stigmatizing beliefs and attitudes of others. These participants described stigma as something that occurred because of the condition of HIV itself, and not because of the ALWH's outward behaviors. It did not matter how well ALWH fulfilled their roles as students, children, and community members because these adolescents would still be living with HIV, thus permanently spoiling their identity. A key stakeholder described how the label of living with HIV trumps all else:

When people find out that you have HIV, they automatically stigmatize you, so it doesn’t matter whether you are a good student or not. They label all of you as being bad people. (Male, youth services clinic coordinator, age 28)

A minority of other participants also agreed that ALWH fulfilling their roles would always be overshadowed by their HIV status, which is the source of stigma. In the way that ALWH cannot change their HIV status, similarly, ALWH role fulfillment cannot change people's perceptions of them as inferior.

Part 3: Recommendations for HIV Stigma Reduction

Individual Action

Counseling services

Nearly all participants identified a need to expand specialized counseling services for ALWH. These counseling services should address HIV stigma, by dispelling stereotypes, particularly around their presumed imminent mortality, and providing positive health education. ALWH need encouragement and role modeling from older peers living with HIV to not only understand but also believe that HIV “is not the end of life.” Healthcare professionals and some ALWH stressed the importance of encouraging ART adherence and helping ALWH accept their HIV status as a critical step in overcoming stigma and promoting well-being. Participants noted that these counseling services should be delivered by healthcare providers, but tribal and religious leaders could also be called on for additional support. Of note, some participants identified a need to involve guardians in their ALWH's counseling services, so the guardians are equipped to support their ALWH, and to ensure they are not perpetrating stigma within the home. As explained by one participant:

I feel like parents need to be courageous enough to go to a place where they can both receive counselling on how the parent can take care of the child, and counsel a child on how he or she can live with it [HIV]. Because the parent's sadness can affect the child mentally, counseling could help both of them. That low mood can affect his or her school's performance and adherence to the medications. It can also lead to self-stigma and the feeling of not fulfilling their expectations. (Female teacher, age 54)

This teacher notes that involvement of parents in counseling services may help ALWH on both a practical level (eg, adhering to ARTs), and emotional level (coping with one's diagnosis).

Additionally, participants noted that counseling services could be offered as a peer support model, so ALWH can support each other through shared experiences. Lastly, some participants noted that prayer and religiosity should be emphasized to ALWH as a source of strength in coping with stigma.

Collective and Corrective Action

Community awareness

All stakeholder participants discussed the need to raise community awareness about HIV stigma through targeted education measures in all four domains. Within the home, parents and caregivers require education about how to provide psychosocial support for their ALWH during adolescence, recognize stigmatizing behaviors in the home, and how these behaviors are damaging for their ALWH's mental and physical health. On a community level, tribal or religious leaders could hold large gatherings to disseminate accurate knowledge about HIV and its transmission, to dispel incorrect stereotypes, and to encourage acceptance of people living with HIV. A clinic staff member spoke to the need for community education:

The chief should inform the community about HIV stigma at a location where many people gather. A lot of things happen in our communities, and community leaders are influential; no one ignores their invitation. The information about stigma due to HIV and depression should go all around into different medias and platforms so that it can reach a larger population. (Female ART nurse supervisor, age 43)

This participant highlights the importance of community leaders delivering these education talks, as community members will respect the words of these leaders.

In the school setting, many participants raised the issue of outdated curricula, which spreads misinformation to students about modes of HIV transmission and prognosis with HIV. Many participants emphasized the need to reform the school curriculum on HIV:

The school syllabus needs to change. It should have content on what HIV and AIDS is. The information we give in clinic differs from what is taught in schools. I think the policy needs to change by involving health sector experts who are well trained on HIV to write a good syllabus for these adolescents. They can be equipped and grow up with the right information about what HIV is and how it is transmitted. This can reduce the stigma. (Female ART coordinator/clinician, age 39)

This ART clinician proposes that health professionals should lead the curriculum change, to ensure that accurate information about HIV is being taught in schools. Many stigmatizing behaviors are driven by inaccurate knowledge, so health professionals are well equipped to provide adolescents with correct information in schools.

In addition, healthcare workers pointed out that schools are only permitted to teach about abstinence as a method of HIV prevention. Healthcare workers identified the need to deliver youth-friendly sexual health talks in clinic settings and provide guidance around prevention of HIV transmission. Knowledge and comfort with safe sex helps destigmatize HIV through increased confidence and reduced fear in sexual encounters. 2.

Redress system for acts of stigmatization

Many participants spoke about the need for redress systems to resolve acts of stigmatization. In the home, ALWH discussed wanting their parents to assist with conflict resolution. Some participants called on community leaders to create community standards and inform the public that stigma is punishable. Teachers noted that students should be expelled after repeated acts of stigma. Although there were varying ideas around redress systems, there was a consensus among adult participants that respected leaders should mediate these issues, and punitive measures should be enforced for repeat perpetrators of stigma. A community health worker spoke to their experience resolving stigma perpetrated by a parent:

I saw a certain adolescent who had HIV. At home, the guardian would shame the adolescent by telling others, “Don’t eat these foods, they belong to HIV patients only.” Even us neighbors were surprised, so the issue was summoned to the chief and the chief called for a meeting. At the meeting, it was the family, the chief, and the healthcare workers. There was an improvement after the meeting and there was no more shame towards this adolescent. (Male community health worker, age 49)

This is one of many examples where community members raised an issue of stigmatization to a respected community leader, who helped to mediate the conflict and ultimately afforded the ALWH a safer living environment.

Discussion

In this qualitative study, we investigate the culturally salient manifestations of stigma for ALWH through discussions with ALWH, adolescent peers, schoolteachers, caregivers, HIV care providers, and mental health providers. ALWH identified key social roles that defined personhood, notably as a family member, friend, church member, student, and active participant in one's healthcare. HIV stigma, primarily in the form of experienced stigma, disrupted ALWH's ability to meaningfully fulfill these roles. In the home, ALWH suffered abuse and neglect, resulting in loss of status as a valued family member and at times, requiring physical relocation from one's home for safety. In community and school settings, ALWH were victims to bullying, gossip, and isolation, particularly after intentional public HIV status disclosure, resulting in decreased engagement with church and school, and loss of friendships. In healthcare settings, ALWH cited concerns around privacy and noted that stigma negatively impacted ART adherence and appointment attendance. In this discussion, we focus on key recommendations to address stigma across all life domains and restore social roles for ALWH, including collaboration with caregivers to resolve stigma in the home, adapting stigma reduction interventions for ALWH using a peer support model, and raising awareness through community campaigns and school curriculum reform (Figure 3).

Figure 3.

Key Stigma-Reduction Recommendations.

Home Domain

The integral role that caregivers play in an ALWH's life was a central theme discussed among many participants. Participants explained that stigma perpetrated in home settings was particularly damaging for ALWH's psychosocial well-being. Parents and guardians may neglect ALWH, by denying them basic resources, such as food, clothing, and education, which has previously been reported in SSA.^51–53 This study revealed that ALWH are also often victims of verbal abuse from family, which is particularly concerning, as familial abuse is linked to depression and suicidal ideation.^5,^53–55 Participants emphasized that parental treatment of ALWH was often modeled by other family and community members, and called on the inclusion of parents in counseling services to address stigma and promote education. The transitional adolescent developmental stage requires specialized support, wherein adolescents are empowered to take ownership of their healthcare yet are still supported by adult figures. Some efforts have been made to reimagine psychosocial support services for ALWH that move beyond individual level interventions and towards family strengthening systems.^55,56 A few models of family-based interventions for ALWH exist in Zambia and South Africa, which aim to improve caregiver knowledge and attitudes, address stigma and disclosure issues, and establish caregivers as key social supports.^57,58 Such interventions have been successful in reducing stigma not only among ALWH, but also their caregivers.⁵⁹ In Malawi, the inclusion of caregivers in future stigma-reduction interventions is critical to halt stigmatizing behaviors in the home and promote partnership with ALWH.

Healthcare Domain

Throughout the domains, participants noted the lack of support from peers disrupted their ability to fulfill their social roles and achieve what mattered most to them. Participants agreed that ALWH need youth-friendly counseling and support services which address the unique challenges (including stigma) posed by HIV. This finding highlights the urgent need to adapt interventions that holistically and simultaneously help reduce stigma, and support ALWH in fulfilling roles that matter most to them and promote social integration. Community based interventions utilizing peer support have shown promise in reducing stigma.^59,60 An emerging WMM stigma-reduction intervention for Botswanan pregnant women living with HIV provides a model that could be adapted for ALWH in Malawi.²⁶ Botswanan pregnant women living with HIV have different conceptions of WMM, so the intervention would be adjusted to align with roles important to Malawian ALWH, in addition to making it age appropriate for adolescents. The Botswanan WMM intervention includes activities needed for stigma reduction, focused on disclosure, self-acceptance, and challenging inaccurate stereotypes – all of which are relevant for ALWH in Malawi. Our study's application of the WMM framework elucidated the multifaceted aspects of an ALWH's personhood (i.e. child, student, friend), which could also be considered in the future intervention, as these social roles are all integral to ALWH's growth and development. In addition to counseling, participants in our study recommended peer support programming. In Zambia and Zimbabwe, interventions with peer supporters and mentors have been successful in reducing stigma and improving viral suppression among ALWH and improved viral suppression.^61,62 Peer support has also been instrumental within Teen Clubs in Malawi to help ALWH realize they are not alone in living with HIV while also receiving physical and psychosocial care, resulting in improved adherence, engagement in care, and viral suppression among ALWH.³⁷ Of note, a study with Malawian adolescent mothers living with HIV illuminated the continued need for peer support as adolescents transition into adulthood and parenthood.⁶³ Leveraging existing WMM stigma-reduction and peer support models, our findings could be used to adapt a youth-friendly stigma reduction intervention, augmented with structured peer and guardian support, that helps ALWH fill age- and contextually-relevant societal roles, and work towards improved HIV and mental health outcomes.

School and Community Domains

In addition to counseling and peer-support services, participants highlighted the significant need for HIV awareness and education efforts to be implemented at multiple levels, but particularly in communities and schools, to combat stigma. These education efforts can correct inaccurate knowledge about HIV, dispel stereotypes about ALWH, inform the public about the harms of stigma for ALWH, and institute punitive measures for perpetrators of stigma. Given that ALWH spend a considerable amount of time in schools learning both academic and social skills that are critical in their developmental stage and that being a student is a primary way for ALWH to participate in society, it is imperative to address the stigma within the schools.⁶⁴ Our stakeholder participants, similar to educators and ALWH across SSA, repeatedly emphasized the need for HIV education reform to ensure students receive HIV information that is factual and unbiased.^65–67 Our healthcare provider participants suggested that health professionals should create and teach the curriculum, which would require policy changes and collaboration between the Malawi Ministry of Health and Ministry of Education. This school-wide stigma-reduction approach has been successful in Cameroon, where students in an intervention school received HIV education from medical doctors and participated in antistigma workshops.⁶⁸ Compared to the control school, students in the intervention school had significant increases in knowledge about HIV and stigma.⁶⁸ Educational efforts should extend to the community to ensure ALWH can participate in the roles that matter to them. In Malawi, a mass radio campaign in which people living with HIV shared their experiences with stigma and other key events of living with HIV was successful in reducing drivers of HIV stigma such as fear of casual contact and shame related to living with HIV.⁶⁹ Multilevel stigma reduction efforts may be more effective at supporting meaningful participation of ALWH in key social roles and at addressing stigma across the domains integral to ALWH health and development.

Limitations

We do not include exhaustive details of every stigma manifestation raised by participants but rather focus on key issues that are most detrimental to WMM. Due to the sensitivity of the topic or presence of adult researchers, adolescents may have underreported certain experiences, especially regarding abuse and neglect. Additionally, we purposively sampled ALWH engaged in youth-friendly HIV care in peri-urban Lilongwe, which limits the generalizability of these findings to ALWH not receiving HIV care, and ALWH residing in rural settings, or other countries within SSA. However, we intentionally designed the study to understand both local conceptions of personhood and the implications of HIV stigma, generating rich data for this critical population. Our qualitative study allowed for the inclusion of diverse perspectives across the adolescent period for those only aged 13 to 19, but future longitudinal studies could further elucidate the evolving nature of stigma as adolescents progress towards adulthood. We also did not specifically explore gendered differences of WMM for ALWH, and it is possible that personhood differs for adolescent males and females, which raises an opportunity for future research. Coding was conducted in English, and we did not perform back-translation or independent checks, which may have introduced subtle interpretive limitations in the analysis. Although we did not conduct a systematic comparative analysis across stakeholder groups, we observed consistency in the perspectives, and future research could explore potential differences among groups. Lastly, most participants stated that the public would hold less stigmatizing attitudes towards ALWH if those ALWH were perceived as contributing members of their local societies. Yet, we did not explicitly explore if attitude changes would result in behavioral change towards ALWH. Nonetheless, our data suggest that supporting ALWH in meaningful participation of WMM will encourage social (re)integration, stigma reduction, health development, and improved HIV and psychological outcomes.

Conclusion

This qualitative study draws on WMM Theory to investigate how HIV stigma threatens an ALWH's ability to attain personhood within their local world. ALWH identified WMM to them as being a good family member, church member, student, friend, and active participant in one's healthcare. These social roles were jeopardized by experiences of stigma including bullying, gossip, physical and social isolation, abuse and neglect, which resulted in ostracization, loss of relationships, displacement from one's home and school, and decreased HIV care engagement. Key recommendations to combat stigma include engaging caregivers to reduce stigma in the home, adapting a peer-based stigma-reduction intervention for ALWH, and developing HIV awareness and education campaigns for the public. These recommendations incorporate stigma-reduction at multiple socioecological levels to support ALWH social inclusion and participation in WMM.

Supplemental Material

sj-docx-1-jia-10.1177_23259582251413319 - Supplemental material for Barriers to Belonging: How Stigma Disrupts Social Roles for Malawian Adolescents Living with HIV and Opportunities for Change

Supplemental material, sj-docx-1-jia-10.1177_23259582251413319 for Barriers to Belonging: How Stigma Disrupts Social Roles for Malawian Adolescents Living with HIV and Opportunities for Change by Maria F. Faidas, Bradley N. Gaynes, Laika Maganga, Steven M. Mphonda, Maureen Matewere, Jeromy Nyirenda, Jack Kramer, Kazione Kulisewa, Nivedita L. Bhushan, Brian W. Pence and Melissa A. Stockton in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Supplemental Material

sj-docx-2-jia-10.1177_23259582251413319 - Supplemental material for Barriers to Belonging: How Stigma Disrupts Social Roles for Malawian Adolescents Living with HIV and Opportunities for Change

Supplemental material, sj-docx-2-jia-10.1177_23259582251413319 for Barriers to Belonging: How Stigma Disrupts Social Roles for Malawian Adolescents Living with HIV and Opportunities for Change by Maria F. Faidas, Bradley N. Gaynes, Laika Maganga, Steven M. Mphonda, Maureen Matewere, Jeromy Nyirenda, Jack Kramer, Kazione Kulisewa, Nivedita L. Bhushan, Brian W. Pence and Melissa A. Stockton in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Supplemental Material

sj-docx-3-jia-10.1177_23259582251413319 - Supplemental material for Barriers to Belonging: How Stigma Disrupts Social Roles for Malawian Adolescents Living with HIV and Opportunities for Change

Supplemental material, sj-docx-3-jia-10.1177_23259582251413319 for Barriers to Belonging: How Stigma Disrupts Social Roles for Malawian Adolescents Living with HIV and Opportunities for Change by Maria F. Faidas, Bradley N. Gaynes, Laika Maganga, Steven M. Mphonda, Maureen Matewere, Jeromy Nyirenda, Jack Kramer, Kazione Kulisewa, Nivedita L. Bhushan, Brian W. Pence and Melissa A. Stockton in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Footnotes

Acknowledgments

We would like to express our gratitude to the participants who shared their intimate experiences with us and allowed their data to be used in this analysis. We are also thankful for our dedicated project coordinator (SM) and research assistants (JN, MM). Lastly, we thank our community partners, including the local clinics and Community Advisory Board, for their assistance in the implementation and guidance of this study.

Ethical Considerations

Study approval was obtained from the Institutional Review Boards of the University of North Carolina at Chapel Hill (IRB #22-0462) and the Malawi National Health Sciences Research Committee (IRB #22201). All participants aged 18 years and above provided written informed consent. All participants aged 13–17 years provided written assent with parental written consent. In accordance with NHSRC ethical standards, emancipated minors below age 18, who were legally married or university students, did not require guardian consent. Before study enrollment, RAs engaged participants in a consent comprehension activity, asking a series of questions about study design, and risks and benefits of participation, to ensure understanding. All participants (and guardian if present) received travel reimbursement equivalent to 10 US dollars, the standard compensation from University of North Carolina (UNC) Project-Malawi.

Consent to Participate

All participants aged 18 and above provided written informed consent. Participants aged 13–17 of years provided written assent with written consent from a guardian. Prior to enrollment in the study, each participant engaged in a consent comprehension activity, during which participants demonstrated an understanding of the study design as well as risks and benefits of participation.

Consent for Publication

Not applicable

Author Contributions

MF led the study by designing the study, and overseeing data collection, data analysis, and dissemination. BN and MS provided mentorship to MF throughout all phases of the study, and reviewed and edited each manuscript draft. LM analyzed data, and contributed to writing the original draft. SM was the research coordinator and oversaw trainings and data collection. MM and JN were research assistants who carried out data collection and analysis. JK assisted with data analysis. KK, NB, and BN provided technical oversight. All authors reviewed and approved the original submission.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was primarily funded by the Fogarty International Center (https://www.fic.nih.gov/) and the Office of Behavioral and Social Sciences Research (https://obssr.od.nih.gov/) of the National Institutes of Health through an award (D43TW009340) received by MF, which supported MF, JN, and MM. MAS received an award (K01MH130226) from the National Institute of Mental Health (https://www.nimh.nih.gov/), which supported MAS and JK. NLB and BNG received an award (R34MH130232) from the National Institute of Mental Health, which supported NLB, BNG, SM, KK, and BWP. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. This content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability

Our qualitative dataset is not available for public sharing because we do not have ethical approval to share beyond our immediate research team. The Research Ethics Boards who have imposed this restriction are the University of North Carolina at Chapel Hill (contact: irb_questions@unc.edu), and the Malawi National Health Sciences Research Committee (contact: directorgeneral@ncst.mw).

ORCID iDs

Maria F. Faidas

Laika Maganga

Supplemental Material

Supplemental material for this article is available online.

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