2023-05-10 07:04:35
Significant but uneven progress
Significant progress has been made in recent decades in the field of prevention and treatment of HIV and AIDS. It transformed from a life-threatening illness to a chronic condition.
‘Since 2015, the number of HIV infections has been increasing again in a number of regions.’
Despite the numerous prevention methods and worldwide scaling up of medical treatment, warns UNAIDS for uneven progress. Medical, economic, legal, social and political inequalities within and between countries threaten the global HIV response.
Since 2015, the number of HIV infections has been increasing in a number of regions again. For example, there is concern about the high infection and death rates among young people in Sub-Saharan Africa. Also access to antiretroviral treatment and support is not optimal in this group. How can we include these young people in the transformation to an AIDS-free world by 2030, as aspired to in the Sustainable Development Goals?
Perspective of young people living with HIV
It starts with a good understanding of the living environment and the concrete reality of these young people. Decision-making processes, campaigns and interventions related to HIV/AIDS are usually developed by experts. The perspective of young people is not taken into account enough. Moreover, the campaigns and interventions are mainly aimed at preventing new infections, and less at improving the quality of life of young people living with HIV.
Those who are infected often experience a lack of understanding in their environment and society at large about what HIV is and what an HIV-positive status means for your daily life. The image people have of HIV is often based on persistent and outdated ideas.
‘Experiential knowledge is crucial for the development of a good HIV response.’
A team from HOGENT and Mountains of the Moon University in Uganda investigated how Ugandan young people with HIV themselves view their situation. What is the image they want to convey about HIV? Their experiential knowledge is crucial for the development of a good HIV response.
The team opted for the ‘photovoice’ method. The participants document everyday experiences with a camera. They then discuss the photos with the other young people. Finally, the visual stories can be shared with a wider audience to raise awareness around the topic. It is a participative and emancipatory way of working, in which the storytellers themselves decide what they show and how they portray it.
Social factors influence coping with HIV
As part of the global HIV/AIDS response, several prevention campaigns have been launched in Uganda over the past decades. These campaigns usually aim to increase knowledge and awareness about the virus and to promote behaviors that help contain the spread of HIV. In short, they are strongly committed to health literacy and behavioral change.
The young people’s visual stories make it clear that these campaigns take too little account of social dynamics and social factors that influence how they deal with HIV. Consider, for example, poverty, gender inequality, domestic violence or limited access to health care.
Because the campaigns focus on individual change, they perpetuate a climate of guilt, shame, fear and isolation surrounding HIV. For example, prevention campaigns in Ugandan schools emphasize that it is your own responsibility to adjust your behavior so that you avoid HIV. As a result, the campaigns implicitly, and perhaps unintentionally, blame those who do become infected.
Campaigns instill fear
Moreover, the campaigns paint a very negative and fatal picture of HIV/AIDS. It instills fear in people. Not only towards the virus, but also towards those who are HIV positive. An unintended consequence is that young people often don’t dare to get tested or don’t dare to get tested for fear of the diagnosis.
However, early detection of HIV is important, as timely treatment and support can limit the impact, both on individual and public health. For example, primary prevention (preventing new infections) undermines secondary prevention efforts (early detection and timely treatment).
‘The risk of contempt, exclusion and discrimination is high.’
These campaigns also turn out to be special stigmatizing for young people who became infected. They therefore do not always dare to be open about their status. Will aid or social devaluation follow? The risk of contempt, exclusion and discrimination is high, which is why many young people prefer secrecy or isolation.
The consequences in almost all areas of life are detrimental to their quality of life. This means that tertiary prevention, which focuses on improving the quality of life of HIV-positive people, is complicated by the image of HIV that is central to primary prevention campaigns.
Dependent on himself
“I was used to living a lonely life,” says Prity, a 15-year-old participant in the project. “It was the best way to hide my HIV from the outside world.” Due to the immense stigma surrounding HIV, many young people do not dare to seek help from their environment or from professionals. They feel completely on their own.
“I was used to living a lonely life.”
Dagie is seventeen and lost all his family members to AIDS. Apart from his grandmother, with whom he now lives, he experiences little support from his environment. “Some people discourage you when you reveal your status. They tell that your life is over, that you are applying for the grave. I strayed so far because of this. So you have to be selective in sharing your HIV status.”
“My guardians don’t want to waste what little money they have on me since I’m sick. That’s why they made me a girl.”
Unfair treatment
Even if the young people manage to limit the health effects of the virus through antiretroviral therapy, their quality of life is affected by how their environment deals with HIV. Young people with HIV often have fewer opportunities at home, at school and in society. They are discriminated against and excluded because of their health status.
Social and structural disadvantages express themselves, among other things in high absenteeism and early dropout in education. It is also more difficult for these young people to earn a living or to get a job. In addition, they experience more emotional, behavioral and cognitive difficulties.
“I’m forced to do all the household chores while the others go to school.”
Unice, who lost her parents to the disease at a young age and was placed in another family, experiences this unequal treatment on a daily basis. “I am forced to do all the household chores while the others go to school,” she says.
“My guardians don’t want to waste what little money they have on me since I’m sick. That’s why they made me a girl.”
Break through doomsday scenarios
Social professionals work daily to support these young people. They try to encourage the young people, to bring hope and a future perspective, and to break through the doomsday scenario that is often projected on these young people from the environment.
However, their efforts do not always bear fruit when a predominantly demoralizing, stigmatizing and discriminatory climate surrounding HIV prevails in the environment of young people.
Mafene, 16, testifies about the negative climate at his school: “The teacher said that the cure for HIV is death. It made me anxious and got bad thoughts.” He took photos of a shipyard for the research. “When I pass such yards, I do not think of building my house, but of how my tomb will be built.”
Worldwide stubborn stigma
The stories of these young people show that HIV cannot be understood in isolation from the social and societal context. That is why a unilateral focus on health literacy and behavioral change among young people is largely inadequate. It even generates some unintended side effects.
Although the experiences of these Ugandan young people are colored by their specific living environment, we see worldwide that the stigma is persistent and that HIV is associated with a lower quality of life. For example, a Sensoa survey among people with HIV in Flanders and Brussels shows that stigma and discrimination are also widespread here.
Holistic approach
If the causes for this lower quality of life can largely be found in the social fabric, it is obvious that solutions will also be sought there. Yet HIV campaigns still lack community focus and addressing social exclusion processes that help perpetuate the HIV pandemic.
There is an urgent need for a catch-up movement in which making visible, acknowledging and tackling these social influences is central.
This means that the global HIV response must focus on improving the social position of people living with HIV. Better social conditions will not only improve their quality of life, but also contribute to the more effective use of services such as HIV testing, antiretroviral therapy and psychosocial counselling.
‘The global HIV response must focus on improving the social position of people living with HIV.’
The Ugandan Aids Commission recently put it into words intention to pay more attention to this. Also during World AIDS Day at the end of last year, UNAIDS launched an international call to set up actions aimed at eliminating inequalities affecting people living with HIV.
The HIV pandemic requires a holistic approach. An approach that enriches the dominant biomedical approach to HIV/AIDS with knowledge about the social context and experiential knowledge of people living with HIV. An approach with a more central role for social professionals who focus on strengthening the social fabric and social services. This is the only way young people with HIV have real opportunities to take part in the fight against the HIV pandemic.
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