Participant Characteristics
There were 42 total participants in this study. Approximately 60% (n=25) of the sample was ALWH, with near equal distribution by gender (n =12 females and n= 13 males) The mean age of ALWH was 16.2 years, with 64% (n=16) οf participants in the 16-19 age group. With respect to education, 32% (n=8) of participants had completed secondary school, with the remaining having only completed primary school. Only 40% (n=10) of participants had two living biological parents. Nearly 75% (n=18) of participants reported food insecurity and 64% (n=16) reported money insecurity in the past year. Participant BDI-II scores ranged from 13 to 50 (maximum 63). The mean BDI-II score was 19.4, near the moderate severity cut-off of 20. Females had a slightly higher BDI-II score at 21.4, compared to 18.0 in males. The majority of participants (76%, n=19) self reported mother-to-child transmission (MTCT) of HIV, with the remaining unsure of how they acquired HIV (Table 2).
Table 2: ALWH Participant Characteristics
n (%)
|
Total ALWH (n=25)
|
Female ALWH (n=12)
|
Male ALWH (n=13)
|
Age (mean)
|
16.2
|
16.4
|
15.9
|
13-15
|
9 (36)
|
3 (25)
|
6 (46.2)
|
16-19
|
16 (64)
|
9 (75)
|
7 (53.8)
|
Education
|
|
|
|
Primary
|
17 (68)
|
6 (50)
|
11 (84.6)
|
Secondary
|
8 (32)
|
6 (50)
|
2 (15.4)
|
Both Parents Alive
|
10 (40)
|
6 (50)
|
4 (30.1)
|
Past Year Food Insecurity
|
18 (72)
|
7 (58.3)
|
11 (84.6)
|
Past Year Money Insecurity
|
16 (64)
|
6 (50)
|
10 (76.9)
|
BDI-II score (mean)
|
19.6
|
21.4
|
18.0
|
Self-reported HIV Transmission
|
|
|
|
MTCT
|
19 (76)
|
9 (75)
|
10 (76.9)
|
Don't know
|
6 (24)
|
3 (25)
|
3 (25)
|
The mean age of caregivers was 47.8 years, with an even gender divide. More than half of caregivers were married and their professions included gardener, landscaper, teacher, and businesswoman. HIV providers included nurses and clinicians with a mean age of 38.3 years. All Periscope participants were female and the mean age was 23.2 years. Periscope staff included four psychosocial counselors and one study coordinator with a mean age of 34 years.
Stigma and Discrimination faced by Depressed ALWH in Malawi
We structured our results around each of the four key domains of the HSD Framework: drivers, manifestations, outcomes, and health and social impacts of stigma amongst ALWH. (Figure 1) Within the drivers domain, fear, lack of awareness, and stereotypes and prejudice emerged as sub-domains. Manifestations include experienced, witnessed, anticipated, and internalized stigma. Within outcomes, sub-domains include engagement in care and resilience and advocacy. Within health and social impacts, sub-domains include morbidity and mortality. In the following sections, we describe themes relevant to each sub-domain.
Figure 1: Health Stigma and Discrimination Framework, Adapted for Depressed ALWH in Malawi
Drivers
Fear
- Fear of HIV transmission
The public’s fear of HIV transmission was the most commonly reported driver of HIV stigma and was reported by both male and female ALWH, and Periscope participants. Participants stated that this fear of HIV transmission often results in others avoiding physical touch with individuals living with HIV. Many participants remarked that sores and skin rashes are of particular concern, as it is a visible sign of HIV that further intensifies the fear of HIV transmission.
“What I fear is if I don’t take my medication, I might develop sores, or rashes on my skin… I am afraid that it can be difficult for me to mix with my friends and come near them… they think you will infect them.” – ALWH, male, age 15, BDI-II 19 (moderate)
These distancing measures taken by people without HIV is further reflective of the pervasive inaccurate knowledge about modes of HIV transmission.
- Fear of the negative effects of ARTs
Participants from all stakeholders groups, except HIV providers, spoke to the negative attitudes around ARTs. Participants spoke to the potentially harmful nature of ARTs, a fear that is held notably by both people living with and without HIV.
“They have a misconception that maybe if I continue taking this medication, I will die a sudden death, and because of this they choose not to take their medication.” – ALWH, male, age 17, BDI-II 18 (mild)
“Others are afraid of having the drugs accumulating in their stomach, causing damage, and this being the main cause of sudden death… as such, some stop taking their medication.” – Periscope participant, female, age 25
Despite recognition that the harmful nature of ART medications is a misconception, the public’s opinion of ARTs creates fear amongst ALWH that these medications are abnormal and unsafe. This fear of ARTs further contributes to negative attitudes towards engaging in HIV care and taking ARTs.
- Fear/association with death
Many participants spoke to the innacurate public notion that having HIV is a death sentence. This fear is perpetuated in school, home, and community settings. In schools, students are taught from a young age that HIV kills.
“Schools take HIV as a killer... the child only knows that HIV kills. The school syllabus doesn’t say anything that a person can be positive and still have a future and have children. So things like these are contributing to our youths having concerns. At school, I was taught this and when I come to the clinic, they are telling me this… Like we used to sing, “AIDS! AIDS! AIDS! Is a killer!” – HIV clinician, female, age 38
This quote exemplifies the societal underpinning that “HIV is a killer.” This HIV clinician references the fact that schools continue to teach that HIV is a fatal disease, over 20 years since this participant was in grade school. HIV’s association with death further drives the fear of HIV transmission.
Lack of Awareness
- Inaccurate knowledge
As described in the prior sections, major drivers underlying HIV stigma are inaccurate knowledge about modes of HIV transmission and the harmful nature of ARTs. This participant describes how inaccurate knowledge may drive stigma.
“Some may choose a cup and give him food separately not to mix with the others…for fear of being infected with the disease he has.” – Periscope participant, female, age 25
In this example, stigmatizing behaviors are driven by the fear that HIV can be transmitted through sharing cups and utensils. This widespread innacurate knowledge underpins much of the fear around transmission.
Stereotypes & Prejudice
- Weak physical capacity
Male ALWH spoke about the commonly held belief that people living with HIV are physically weak and prone to illness. Notably, this stereotype was not raised by female ALWH. This male ALWH describes how this stereotype manifests in community settings where men are expected to participate in manual labor.
“A youth who has HIV cannot manage to push his or her dream forward and cannot do a tiresome task, like digging graves. For instance, if someone says, “Take this one to help dig,” others will say, “Do you want your friend to continue getting sick?” People talk like that… When you want to help dig by removing dirt in the grave hole, some say, “This one can’t manage, his body is already finished. Do you want us to bury two people here?” That’s how it goes.” – ALWH, male, age 18, BDI-II 21 (moderate)
This quote exemplifies the negative stereotypes that are held about males living with HIV, that they are weak and illness prone, and thus incapable of participating in physical labor and fulfilling their societal expectations.
- Inability to achieve dreams
The stereotype that a person living with HIV is unable to achieve their dreams follows from the stereotype that they are physically weak and unhealthy. In the quote that follows, a caregiver of an ALWH shares a story of his mother telling him that he will not live long enough to eat fruits from a tree he planted.
“Before I started taking my ARTs, I planted a Masuku tree, and my mum said to me, “You are planting that tree. Will you even have a chance to eat its fruits. Who will eat them for you?” I said to her, “Mum, I shall eat them, and for your information, you shall die while I still live.” Of course, she died and I am eating Masuku.” – caregiver of ALWH, male, age 31
This metaphor speaks to the presumed poor prognosis of a person living with HIV. Planting a tree can represent goal setting and future-oriented tasks. Eating fruits from a tree one has planted can symbolize achieving one’s dreams. In this example, the mother implies that he will not live long enough to eat the fruits and achieve his dreams. Notably, this view is held by a mother of a former ALWH, which exemplifies how a stereotype is carried forward throughout many generations.
- Negative attitudes
Many participants discussed the pervasive negative attitudes towards ALWH, for no reason other their HIV status. Even without knowing someone’s character, a community member may judge and think negatively about ALWH due to their HIV status. A caregiver explains how community members are prejudiced towards an ALWH:
“I see that discrimination is common in our communities, and this makes people feel unwanted and less important. This comes when people discover that you are HIV positive and you are on ART; they develop a certain hate towards you and they don’t want you near them, so they discriminate you.” – caregiver of ALWH, female, age 47
These negative attitudes are pervasive in community settings, often without cause, but may also be a direct result of the previously discussed drivers, including fear, lack of awareness, and negative stereotypes.
Manifestations
Experienced Stigma / Witnessed Stigma / Anticipated Stigma
This section describes experienced, witnessed, and anticipated stigma. When discussing manifestations of stigma, only a few participants spoke directly about personal experiences of stigma. Instead, most participants spoke about witnessed stigma, which in turn resulted in anticipated stigma.
- Gossip
The most common manifestation of HIV stigma discussed was gossip. Nearly all participants, including ALWH from both sexes and age groups, reported gossip as the most feared manifestation following HIV status disclosure. This female ALWH describes how gossip can spread in the community.
“However, when you part ways with the person he or she can go to his or her friends and start saying that Thandi* takes ARTs. “I escorted her today (to the clinic), I know that she receives (ARTs).” The news that Thandi takes ARTs can now spread.” – ALWH, female, age 17, BDI-II 16 (mild) *name has been changed
An individual’s HIV status is regarded as highly private information and a noteworthy piece of gossip. The ensuing gossip after HIV status disclosure can be devastating to an ALWH. As discussed in the Outcomes section, ALWH do not want to be seen at a health clinic, as community members may make assumptions about their HIV status and spread the news through the community.
- Insults and mocking
Participants commonly reported insults and mocking from both friends and family. The insults could be provoked or unprovoked, as illustrated in the quotes below. This male ALWH explains that after a fight or misunderstanding with his parents, his parents capitalize on this opportunity to insult him:
“Many people, my friends, and even my parents get so comfortable and say that I am good for nothing… mock me comparing me to my siblings and saying they are far better than me and they are obedient.” – ALWH, male, age 19, BDI-II 17 (mild)
In this example, his parents compared him to his siblings (who do not have HIV) and attribute his “bad behavior” to his HIV status. Another participant notes that his peers mock him for his HIV status without an identifiable reason.
“Some know your secret, that you are in this situation— so they just say something to disturb you. They can say something concerning your (HIV) status like, “This (person) takes medication every day, what kind of person is that.” You see, things like that.” – ALWH, male, age 17, BDI-II 13 (minimal)
In this example, his peers mock him for taking ART medications, with the sole intent of causing distress.
- Physical and social distancing
Participants also commonly reported physical distancing, with specific mentions of refusing to eat, bathe, and socialize with ALWH, all driven by the fear of HIV transmission. This physical distancing was reported in home, school, and community settings. A Periscope participant shares an example of distancing within the family unit:
“They say a lot of words like “You can’t be my brother, especially one who is on ARTs.” For example, it happened to me that my own sister said, “Don’t come near me, you have HIV. There should be social distance between us.” … I got counseling.” – Periscope participant, female, age 21
In this example, a person living with HIV explains how her sibling without HIV refused to socialize with her within the home. This experience was so distressing that she received counseling. Participants also noted that these stigmatizing behaviors are also often enacted by a step-parent towards an ALWH, which often becomes the grounds for abuse and neglect
Internalized Stigma
Internalized stigma, or self-stigma, was reported by all participants, including ALWH, caregivers, and Periscope participants. In this process, an individual begins to identify with the negative stereotypes and treatment of individuals living with HIV, thus adversely influencing their self-esteem. As described by one male ALWH:
“They say that those who take ARTs should not chat with us and we are playing only with the ones who don’t take ARTs… so this makes you think a lot and ask questions like “Why did this come to me?” or “Who are you?” which makes you feel guilty.” – ALWH, male, age 17, BDI-II 18 (mild)
This participant notes that his peer’s refusal to chat and socialize with him produces a sense of shame and guilt, which contributes to the development of internalized stigma. In the example below, another male ALWH describes a similar process, and directly cites stigma marking via HIV status as a contributor to internalized stigma.
“Maybe sometimes when someone says I am worthless it gives me a lot of thoughts that maybe is it because of my status… You start attributing it to some things that differentiates us, like [HIV] status …. So, I ask myself questions …. with no answer you start feeling worthless… that ahhhh maybe it would have been better if I wasn’t born here… so it is tough.” – ALWH, male, age 19, BDI-II 17 (mild)
This ALWH describes his personal process of facing stigma from others, accepting those critiques, and how it impacts the way he perceives and values himself. Notably, an individual may keep their HIV status a secret, but still experience internalized stigma,as it is a deeply personal process and often driven by witnessed stigma.
Outcomes
Engagement in Care
- ART non-adherence
Many participants report that HIV stigma is a major contributing factor to ART non-adherence. In particular, ARTs are heavily stigmatized primarily because being seen taking ARTs reveals one’s HIV status, but also due to the belief that they are dangerous medications that can cause a sudden death. In the following example, a male ALWH describes how stigma directly impacts his nonadherence to ARTs.
“When you are mocked by friends and they say “Go away, you take ARTs,” that makes you think too much like, “I take ARTs, these are not normal drugs”… As a confidence booster, you can say, “I don’t take ARTs”…
They spread that this one has HIV and convince everyone that they should not associate with you and they call you different names…. It is so discouraging and you end up getting frustrated and consider not to continue taking your drugs [ARTs]… you end up just stopping to take the medication.” – ALWH, male, age 17, BDI-II 18 (mild)
This ALWH reflects that community members perceive ARTs as abnormal drugs. In a healthy adolescent with suppressed viral load, ARTs serve as a visible marker of an illness that may otherwise be invisible. ART use denotes a “diseased” state, so identifying ART use in the stigmatization process functions to mark ALWH as “different.” Thus, an ALWH may choose to stop taking their ARTs in an effort to hide their HIV status, fit in with their peers, and avoid further stigmatization. In the quote that follows, an HIV provider explains how depression driven by stigma can also contribute to ART non-adherence.
“Mainly it’s because of feeling sorry for oneself that I’m taking medication. Some, it’s because they lose heart that they will be taking medication for the rest of their lives. So, they say it’s better to just stop taking medication and die. They see themselves as no longer important. They think they will be laughed at or they will be asked why they are taking medication every day. These make one to be depressed and stop taking medication.” – HIV provider, male, age 42
Participants frequently reported discouragement around having to take a medication for the rest of their life. The responsibility of taking life-long medications, compounded by the mocking around ART use, contributes to ART non-adherence. This HIV provider also references internalized stigma, in noting a lack of self-importance, as a factor in ART discontinuation. ALWH may choose death as a preferable option over a life overshadowed by stigma and societal rejection.
- Missed HIV appointments
ALWH and Periscope participants also reported how HIV stigma can lead to decreased appointment attendance. As explained by one female ALWH:
“We can be shy to go to the place where medication is received [the clinic]… maybe when you go to receive medication, you can meet a friend.”—ALWH, female, age 19, BDI-II 13 (minimal)
This ALWH explains that attending HIV appointments is a potential mechanism for inadvertent or involuntary HIV status disclosure. For this reason, she is hesitant to present to clinic to receive her ART medications. HIV appointment attendance can also be influenced by challenging family dynamics, where parents refuse to take their ALWH to the hospital or clinic. In this example, a caregiver explains how he was informed of such a scenario.
“My daughter told me,“I have a friend and he doesn’t go to the hospital but is also HIV positive. His mum chased a [healthcare worker] who visits us and told her that she should mind her business. So the boy asked me, “Why does your mum support you and you have a good relationship? As for me, I have spent over 6 months without going to the hospital.” So my daughter asked him to come to me. The boy is afraid to come to me and I am also uncomfortable considering the negative reception he had towards the healthcare worker… this makes the boy sad since there is no support. Even if he stops taking his medication, there is no one to follow him and encourage him.” – caregiver of ALWH, male, age 31
This example demonstrates a caregiver’s fear of being seen having a healthcare worker visit their home and later being identified as having a child living with HIV. This anticipated stigma creates further barriers to care for her child in accessing HIV care.
Resilience & Advocacy
Social support, particularly from other ALWH, as well as from family and friends, was important for resiliency and negating the downstream adverse impacts of stigma. Identified support needs were understood as two distinct, yet interrelated ways: support for HIV care engagement, and psychosocial support.
- Support for HIV care engagement
ALWH reported that they often found support for HIV care engagement from other people living with HIV. One ALWH explains that her aunt, who is also living with HIV, supports her by providing advice on how to take ARTs, giving appointment reminders, and providing education on how to protect oneself from other communicable diseases. In this way, members of the same stigmatized group can encourage each other to remain engaged in their HIV care, despite opposing cultural norms.
“The support is in advice form—advice about how to be taking ARTs, and also the way I can take care of myself. [She tells me] that I should be taking medication at the right time, and I should be going to the clinic to collect medication on the date they have given me… She says that there are other types of diseases that someone can infect you with apart from HIV. So, she tells me how I can protect myself so that I should not contract those communicable diseases like cholera, corona, syphilis, and gonorrhea.” –ALWH, female, age 18, BDI-II 31 (severe)
This female ALWH explains how she received medical advice from her aunt, which is helpful in promoting her own well-being. Receiving advice from a trusted relative living with HIV can be particularly impactful in reducing stigma. They can share experiences navigating HIV care and promote accountability with ART adherence. In another example, a Periscope participant shares how important it is for family members (including those who do not have HIV) to encourage ART adherence:
“She [sister] has to encourage me so that I can get motivated to look at taking medication as something normal.. we need support from them, to tell us to take medication, so we can be healthy.” –Periscope participant, female, age 21
This participant reflects how her sister’s ART encouragement signals a larger acceptance of one’s HIV status. Feeling accepted in this way is integral in overcoming stigma, adhering to ARTs, and living a healthy life. On the contrary, discouragement of ARTs leads to detrimental downstream health effects, namely opportunisitic infections and HIV progression.
- Psychosocial support
Despite often facing stigma, participants note that ALWH can find psychosocial support, primarily by talking to friends and family members. This quote illustrates some of the positive support an ALWH may receive:
“Okay, the way I am I can be told unpleasant things because of my [HIV] status which affects me. So, this person is by my side enlightening me … “You should not be stressed very much, there are a lot of people who have HIV and they are living okay with their life. It’s not like they are suffering, their life is okay and stable. They are not stressed. If you are like those people, that is going to help you fulfill your dreams.” That’s some of the advice.” –ALWH, male, age 17, BDI-II 13 (minimal)
This male ALWH describes how he needs someone to provide psychoscial support that challenges prevailing inaccurate HIV stereotypes. He specifically cites wanting future-oriented advice, inspiration to fufill one’s dreams, and dispelling myths that HIV is a death sentence. These words of encouragement can help ALWH resist downstream effects of HIV stigma, such as depression and anxiety.
Health & Social Impacts
Morbidity
- Poor mental health
Participants reported that HIV stigma is a major contributor to poor mental health, including symptoms of anxiety and depression. In the example that follows, the participant notes that his symptoms of depression escalated significantly after his HIV status was disclosed by his mother.
“When I told my relatives and parents, they took it well. But some relatives couldn’t keep it a secret. When we had a disagreement, they would start talking about the condition [HIV]. This made the feelings [of depression] start escalating little by little, up to a point that they were overwhelming. This made me feel sad and it would take me a lot of time to come back to my normal state.” – ALWH, male, age 18, BDI-II 21 (moderate)
As illustrated in this example, HIV status disclosure, as the trigger to the deterioration of one’s mental health, was a common narrative portrayed by ALWH.
- Substance use
One participant spoke about using substances to cope with the psychological distress of living with a chronic, highly stigmatized disease such as HIV.
“Of course, sometimes I do get stressed about it [my health] … We are worried about it because we are not okay, even though we look strong… Our condition exposes us to a great vulnerability needing comprehensive care, which in true sense, we can’t afford. So, because of that our health gets compromised. So, with that, and to fit in, you find yourself involved in drug and substance abuse which again destroys you… It is capable of destroying our lives.” – ALWH, male, age 19, BDI-II 17 (mild)
In addition to using substances to relieve stress, this male ALWH notes that substance use is a way to fit in with peers and overcome the social isolation created by HIV. He recognizes the harmful effects of substance use on one’s health, which may exacerbate challenges in engaging in HIV care, as well as the physical health concerns associated with HIV.
- Suicidality
Participants also discussed the close link between HIV stigma and suicidal ideation. This male ALWH describes how HIV status disclosure leads to HIV stigma, including mocking and internalized stigma, which results in severe anxiety. Furthermore, this participant believes that if his HIV status were to be disclosed, it could lead to his own suicide.
“Someone disclosing your HIV status makes me anxious because it can spoil a lot of things… having stresses and maybe worrying… so you lose confidence. When people are laughing about their own things, you think they are laughing at you… So, it is difficult, and I worry that if it happens that way, then that’s the end of me. So, because of such a high level of anxiety, you can end up committing suicide.” –ALWH, male, age 19, BDI-II 17 (mild)
In this example, the anxiety resulting from concerns over HIV status disclosure and HIV stigma are directly linked to suicidal ideation. A Periscope participant shared a similar sentiment, connecting HIV stigma and suicide for ALWH.
“He can stop taking medication because the best option for him is to die, or maybe think of hanging himself, thinking that he is being stigmatized because he has HIV.” – Periscope participant, female, age 22
In this manner, she notes that for an ALWH, HIV stigma can have such a negative impact on their self-worth and self-esteem that they might feel their only option is to take their own life.
Mortality
While not explicitly stated by participants, the aforementioned discussion of the adverse impact of stigma on access to and engagement in care as well as increased morbiditiy implies that individuals connect stigma with increased likelihood of mortality due to HIV. For example, in the quotes presented throughout this manuscript, many participants describe a belief that those who stop taking their ART will die from AIDS complications, or suggest that the impact of stigma on mental health may cause premature death from suicide.