Adolescents living with HIV in rural Uganda are subject to negative community perceptions, stigma and structural vulnerabilities, according to qualitative research with adolescents and female caregivers. Protective factors included counselling, family and religious support as well as timely status disclosure. The study was conducted by Dr Scholastic Ashaba of the Mbarara University of Science and Technology and Dr Christine Cooper-Vince of Harvard Medical School and colleagues and published in the African Journal of AIDS Research.
Of all the adolescents living with HIV globally, approximately 80% live in sub-Saharan Africa, with this number continuing to rise. They face the dual burden of living with HIV and dealing with the challenges of adolescence.
Understanding psychosocial factors impacting adolescents at the individual, interpersonal, family and community levels could result in better treatment outcomes and overall health. A critical factor is stigma: how adolescents are excluded socially, and how they internalise this, has direct impacts upon their health. These psychosocial factors may be even more pronounced in rural settings, where extreme poverty, structural vulnerabilities and a lack of knowledge may all result in poorer health outcomes.
The study was conducted in Mbarara, a rural district in southwestern Uganda. Most residents live outside the town where food and water insecurity are challenges. Participants consisted of two groups: adolescents (living with HIV and those with unknown status) and female caregivers who either cared directly for adolescents with HIV or other adolescents in the community. Participants were recruited from a regional hospital and a local parish community site.
Adolescents living with HIV were made vulnerable as a result of poverty and as a consequence of the AIDS-related deaths of their parents.
Two focus groups were conducted with 15 adolescents aged between 13-17 (four boys and eleven girls, eight living with HIV); in-depth interviews were also conducted with ten adolescents (two males and eight females, five living with HIV). Three focus groups were conducted with 25 female caregivers as well as 30 in-depth interviews with female caregivers.
Focus groups and interviews focused on perceptions of adolescents living with HIV, social challenges and the consequences of these challenges. Data analysis revealed themes in the following categories.
Negative community perceptions
Two key negative perceptions were discussed: presumed early mortality and perceived aggression. The idea that adolescents living with HIV would die early led to neglect regarding general welfare and educational opportunities. Loss of hope among adolescents living with HIV was also common, as they were frequently told that they would die early.
Adolescents and caregivers also spoke of aggression from HIV-positive adolescents upon discovering their status. Participants reported that adolescents would blame their parents for infecting them and then act out. Adolescents with HIV were also perceived as engaging in high-risk behaviour, such as substance abuse and sex with others to intentionally infect them.
These perceptions were shared by many participants (regardless of HIV status) in both adult and adolescent groups and resulted in adolescents with HIV being viewed as bad influences on others.
“Sometimes you find people saying that she or he is about to die because she is HIV positive. When you hear such things about you, you ask yourself why you should waste your energy in doing anything in life since you are about to die.” – 15-year-old with HIV.
“They [children living with HIV] are a bad influence to other children in the community. When they learn of their HIV status, they start to behave badly towards others because they know they will die. They influence other children to go and drink alcohol, influence them into having sex with them to intentionally infect them.” – 16-year-old, status unknown.
Participants described both enacted and internalised stigma.
Enacted stigma referred to instances of overt discrimination based on HIV status. This occurred at home, at school and in the community. When HIV-positive adolescents shared homes with HIV-negative children (for instance, after being taken in as following the death of a parent), unequal treatment was reported.
“When a child is at school and other children learn that he is HIV positive, that child suffers a lot. Other children discriminate against him, they call him names “you are suffering from AIDS,” like that...” – 37-year-old caregiver.
Internalised stigma came about as a result of negative treatment and referred to feelings of shame, embarrassment and low self-worth. Adolescents living with HIV often isolated themselves in order to avoid being excluded by others.
“You start withdrawing from your friends. You stay in the house feeling lonely. You refuse to join peers because you know they will talk about a person who is HIV positive whom you [probably] stay with…” – 14-year old with HIV.
Adolescents living with HIV were made vulnerable as a result of poverty and often as the consequence of the AIDS-related deaths of their parents. Many of those who had lost their parents no longer had anyone to provide for their basic needs. These adolescents were at risk of dropping out of school or engaging in high-risk behaviours such as transactional sex. For those who had parents living with HIV, financial resources were often dedicated to covering the adult’s treatment and transportation costs. Adolescents were anxious about the possible death of a parent and the resultant economic challenges.
“Children who have lost their parents to HIV face many problems. Those children are disturbed in their studies and basic care. You find them loitering in the villages. Girls start interacting with men at an early age and end up sleeping with them to get money to support themselves.” – 38-year-old caregiver.
“…You get stress. Like where you will get school fees if your parents die. Like how you will live without parents. You know living a life without parents is hell. Therefore, when you keep thinking about such problems you become stressed.” – 16-year-old living with HIV.
Adolescents living with HIV spoke about both mental and physical health challenges. As a result of enacted stigma, such as being avoided by peers, gossip and discrimination, some adolescents living with HIV reported feeling inferior to their HIV-negative peers and that nobody would want to associate with them. This led to deep feelings of shame and even thoughts of suicide in certain instances. Adults also actively discriminated by warning peers against socialising with HIV-positive adolescents.
“HIV-positive adolescents do not fit in with their peers. Let’s say you are walking towards them [peers], then you see them looking aside, trying to dodge you or ignore you, they move away from you. Then you feel guilty and angry, and start having recurrent thoughts of death: should I kill myself using rat poison, throw myself in the lake, or cut my neck and die? What can I do?” – 14-year-old with HIV.
“HIV-positive children are isolated. You find adults saying “don’t share your clothes with her because she will infect you with AIDS.” It becomes so difficult for the infected child to go on with these insults…” – 16-year-old with HIV.
Challenges were reported with adherence to HIV treatment, especially for those attending school away from home. Adolescents cited the stigmatising nature of having to take medication regularly, being asked what it is for and the constant fear of being discovered as HIV positive as significant deterrents to taking medication.
“They [HIV-positive children] have a problem of taking HIV medicine especially children in boarding school. They get difficulties in taking their medicine while others are watching. When you hide yourself to take your medicine and someone sees you, you start lying…” – 15-year-old with HIV
Counselling from doctors, family and social support, timely disclosure of HIV status, and religious faith were cited by participants as protective and beneficial.
“When they come to the doctors, they are told that having HIV does not mean that you have come to the end of the world, you might study and get a degree, and you might live and have a future like any other people.” – 42-year-old caregiver.
“When children involve themselves in church activities like fellowshipping with others and attending overnight prayers, they realise that being HIV positive does not mean the end of the world.” – 15-year-old with HIV.
“HIV care programs for adolescents living with HIV in rural settings should address the challenges of stigma, disclosure of HIV, and formation of peer support groups to improve mental health outcomes and ART adherence,” conclude the authors. “Interventions to correct community misperceptions about HIV, including early mortality and drivers of risky behaviour, can potentially reduce HIV stigma, and thereby improve physical and mental health outcomes among adolescents living with HIV.”
Ashaba S et al. Community beliefs, HIV stigma, and depression among adolescents living with HIV in rural Uganda. African Journal of AIDS Research (2019).