In the beginning was the word. How conversations about HIV help teenagers manage their condition

03/05/2024
Today, HIV is a chronic condition that one can live with for a long time, fully and actively, without transmitting the virus to an HIV-negative partner, enabling the creation of families, childbirth, and child-rearing. The primary requirement for those infected is to rigorously maintain lifelong therapy, consistently monitor the condition, and regularly consult healthcare professionals.  HIV demands significant self-discipline and responsibility from the individual living with it. We inquired with Maria Bryanskaya, a representative of the Children Plus Foundation and coordinator of the Trampoline project, about nurturing these qualities in adolescents facing difficult life situations, including those in orphanages. 

In Russia, there are 10,819 children living with HIV. Children are most commonly infected by their mothers during childbirth, breastfeeding, or in the womb. Adolescents represent the most challenging age group in childhood. They also constitute the largest group - 65% - among children carrying the virus. Due to carelessness and attitudes of discontent, adolescents may discontinue their therapy, thereby disrupting the course of treatment. When treatment is halted, this results in the virus developing resistance to the therapy. As a consequence, it becomes necessary to alter the regimen, although the number of available treatment regimens is limited. Thus, interruption or cessation of therapy can inflict significant damage on the health of the carrier and potentially lead to the infection of others.

The Children Plus Foundation has been aiding children with HIV since 2015. In 2018, the foundation launched the Trampoline Project to motivate HIV-positive teenagers to adhere to their treatment regimen and to live a healthy lifestyle. 

IT IS CRUCIAL FOR CHILDREN TO DISCUSS THE DESEASE, BUT OFTEN THERE IS NO ONE TO TALK TO

The foundation began with the mission of placing HIV-infected orphans into families. Over time, foster parents started seeking our advice on how to discuss the disease with children who were growing up, how to gently inform them about their diagnosis, and what actions to take if a teenager rejects therapy.

We also knew there were many HIV-positive adolescents in orphanages who had little knowledge about their disease. At that time, there was no widespread educational work being conducted with these young people. The children had become accustomed to being given medication and reminded to take it, but the intricacies of therapy were not thoroughly explained to them.  

Story #1

Kostya*, an orphan raised in an orphanage, has HIV from his parents, which remains his sole memory of them. Every morning at 8:00 a.m., a doctor awaits him, offers a pill and a glass of water, makes sure Kostya swallows the medicine, and wishes him a good day. Kostya is seventeen and has been informed that after his release, he would be responsible for managing his own medication and regular pharmacy visits. But he hasn’t delved into the details, as it’s not imminent—it’s a year away, and he’ll figure it out when it’s closer to the time.

*The name is fictional.

“Approximately 30% of children with HIV are in the custody of their blood relatives. More often than not, the parents of these children died of AIDS or substance abuse before treatment became widely accessible. Typically, these children are raised by grandparents and aunts. Due to generational gaps, they often cannot respond to many of the teenagers’ queries. And in such families, there’s frequently an unaddressed psychological trauma from loss, hindering healthy communication.”

Story #2

Tanya* is sixteen and she has HIV. She was born with the immunodeficiency virus, contracted from her mother during childbirth. Her mother battled addictions, didn’t seek treatment, and passed away from the illness a few years ago. Now, Tanya lives with her grandmother, adheres to her therapy schedule strictly at 7:00 p.m. each evening immediately following a substantial dinner to prevent nausea. Her grandmother regularly takes her to the AIDS Center, where tests confirm that the treatment is effective and the disease is under control.

Tanya is a teenager, and she is concerned about significant matters. How can you tell if a boy likes you? How does one kiss? Which profession should she choose? Does she look better with bangs, or should she grow her hair out?

These questions are compounded by more personal ones. Questions related to her being different, those that she cannot discuss with her friends. For instance, can HIV be transmitted via a kiss? If a romantic relationship with a young man progresses, how should she disclose her positive status to him? Is it permissible to date non-infected individuals, or is her grandmother correct in saying, “You should only date those like you,” “Don’t ruin people’s lives”?

Generally speaking, it’s tough to converse with her grandmother; any time the topic shifts to something personal, especially concerning the illness or her mother, her grandmother becomes tearful. Tanya avoids causing her grandmother distress and keeps personal concerns to herself.

An array of such stories and learning from international practices led to the foundation’s decision in 2018 to initiate a mentoring project. The project’s mission is to provide each child living with HIV with personalized support, to empower young people to safely discuss the issues that preoccupy them, and most importantly, their condition, with a trusted individual.

*The name is fictional.

MENTORS ARE PIVOTAL PARTICIPANTS IN THE PROJECT

Initially, Trampoline was implemented on a peer-to-peer model, where mentors were also HIV-positive adults. However, it quickly became evident to coordinators that a shared diagnosis is not a prerequisite for building trust. Conversely, interaction with an individual without HIV offers the child invaluable experiences of acceptance and normalcy.

People over the age of 24 who have undergone a two-month training program can participate in the project.

The training involves six sessions - the first and the last are in-person, while the intermediate ones are detailed four-hour online classes. During these sessions, prospective mentors study the psychological traits of orphaned children, learn about HIV, AIDS, teenage psychology, and the principles of mentorship.

At the conclusion of the training, participants must pass an examination.

Examples of test scenarios:

Only mentors who have successfully passed the examination are introduced to their mentees. The curator and psychologist of the project decide whether you will work with a family child or with a ward of an orphanage institution.

Additionally, within the framework of the project, mentors receive ongoing support in establishing rapport with their mentee, case analysis with psychologists, team-building activities, and more.

The project stipulates that the mentor should meet with the adolescent at least twice a month in person and engage in online communication twice a week.

Currently, there are 139 pairs within the project, and a total of 242 pairs have been established over the years at Trampoline.  

WHO BECOMES A MENTOR

On the one hand, parents change their place of living because their child’s HIV status has become known at school and the child has faced bullying. On the other hand, in the same cities, many individuals volunteer and give their time selflessly to mentorship.

“Most often, mentors are women aged 35-40, active in their communities, married, and raising children. Future mentors typically learn about the project through their friends, by word of mouth.”

After training, approximately 30% of trainees continue with the project. This is considered a high retention rate among similar initiatives.

The primary task of a mentor is to guide their mentee through friendship and casual conversation, teaching them to live with their diagnosis and preparing them for an independent life as adults.

Case #1 from the Foundation’s Work

For several months, a mentor called her mentee every day at a predetermined time via video link, during which the girl would take her therapy. This is how the habit was established and reinforced.

Case #2 from the Foundation’s Work

There was a case where a boy was being raised by his grandmother. Her son died of AIDS, and she was extremely fearful for her grandson’s health. Because the grandmother was of advanced age, her overprotectiveness severely limited the child’s exposure to the world. The mentor became someone the grandmother could trust, someone knowledgeable about the disease and safety precautions. Thanks to this, the boy became better at socializing, learned to use public transportation, and navigate the city.

COOPERATION WITH AIDS PREVENTION AND CONTROL CENTERS 

Every region has an AIDS Prevention Center. These are specialized institutions of the Ministry of Health tasked with the control, diagnosis, and treatment of people living with HIV and AIDS. The Centers issue prescriptions for medications and perform tests. Engaging with these institutions is a crucial part of the project.

According to Maria, it is very difficult to carry out a full-fledged project without partnering with AIDS Centers.

“Currently, the Foundation has cooperation agreements with AIDS Prevention Centers in all regions where we work. It is often the staff of the Center – usually psychologists – who refer our foundation to parents/caretakers struggling with communication issues with their children or when they notice an adolescent or young adult refusing therapy. Without such partnerships, it is more challenging to reach out to children who are being raised in families, due to the high level of self-stigma.”

STRONGER WITH CSS

In 2018, Moscow and St. Petersburg were the first cities to join the project, later followed by Novosibirsk and Samara.

In 2020, the Children Plus Foundation participated in the “Stronger with CSS” competition from the CSS Foundation. One of the competition’s objectives is to support the protection of childhood, as well as to promote a healthy lifestyle and improve the moral and psychological state of people. The Trampoline project received support from CSS amounting to 5 million rubles.

Thanks to winning the competition, the foundation managed not only to continue its work in the regions where it was already present but also to expand into new cities, Ufa and Yekaterinburg.

“Of course, we dream of having a mentoring project in every corner of Russia, but this goal remains beyond reach for now. Before deciding on a new location, we study the nationwide statistics. We aim to identify regions with the highest number of children with HIV and orphans with HIV. And we endeavor to find opportunities to establish a presence in these areas.”  

One peculiarity during the period when the Trampoline Project was supported by the CSS Foundation was COVID-19, which led to the orphanages being closed to visitors and a general increase in cautiousness.

“Initially, we were confused, but subsequently, we converted all in-person interactions to an online format. We were fortunate to have introduced pairs in person before the onset of the pandemic.”

“Typically, as part of the project, we conduct monthly supervisions with mentors to discuss any challenging issues that occurred within the pairs and to assist in finding solutions. When the lockdown began, we increased the frequency of these supervision sessions and held supportive training to help everyone adapt to the changed circumstances. It provided significant moral support to many at the time.”

COVID turned out to be not the final challenge in the history of the project. In February 2022, the companies that had supported the foundation and the Trampoline project for many years withdrew from Russia.

“HIV-focused foundations seldom receive support from the general public. However, apart from grant-making entities such as CSS, we have consistently and significantly received support from the international pharmaceutical industry. Regrettably, in 2022, our partners reduced their support for social programs in Russia. It has been extremely challenging for us, but we have endeavored to maintain the level of assistance for the children at all times.”

Today, the Children Plus Foundation is a premier charitable organization in Russia dedicated to aiding children born with HIV. The Foundation is responsible for the care of 1,690 children with HIV (13% of the total number in the Russian Federation), and it operates with 241 volunteers and comprehensive projects across 11 regions of the country.