Removing Stigma, Listening to the Doctor

“At school, our teachers used to dedicate entire lessons to the topic of HIV. They didn’t present it in a way that we could empathize and support these people. On the contrary, it was mostly portrayed in a negative light. It felt like intimidation,” recalls Anastasia Shutova, a seventh-year year student at Karaganda Medical University.

This educational establishment was the first university in the country to introduce a course on psychosocial support for children living with HIV and other chronic diseases into its undergraduate and graduate programs. The project was supported by the United Nations Children’s Fund (UNICEF). Its focus has been the improvement of the follow-up of children and adolescents living with HIV to help them remain committed to treatment, prevent mental health issues, overcome social exclusion and boost their quality of life.

As reported by the Kazakhstan Scientific Center for Dermatology and Infectious Diseases, 669 new cases of HIV were registered in the age group of 14 to 29 in 2021. The number of cases in this age group stayed level with that of 2020 (668). Adolescents aged 14 to 17 account for 2.8% (19), while the remaining 97.2% are young people between 18 and 29 years old.

“These children, unfortunately, tend to withdraw into themselves and avoid communication with their peers. Before this training, I didn’t fully understand the gravity of this problem,” says Alina Azekenova, a seventh-year medical student at Karaganda University. The girl has completed the course on the psychosocial rehabilitation of HIV-positive children.

Alina has completed the course on the psychosocial rehabilitation of HIV-positive children.

“This course helped me realize that psychosocial support for children with HIV infection is essential. Besides, I learned how to assess families according to the UNICEF program. This is probably one of the most important aspects for doctors,” says Alina.

Her course mate, Evgenia Sapalidi, was able to take a fresh look at how to communicate with a child with a chronic illness: “Talking to a child about their condition cannot be a one-time event. Long before you think they’re ready to know the name of the disease, you can start telling him the story bit by bit.”

As part of the training, the students had the opportunity to try on the role of both a doctor and a parent: the training was based on the practical analysis of difficult “everyday” situations. Anastasia recalls these team role-playing games with gratitude: “I think they united us and let us see that you have to get close to the patient to understand him or her in their difficult situation.

Even though the medical students have not yet encountered clinical cases in real life, they are confident that they will be able to give the right kind of support to the children and adolescents living with HIV. “We thoroughly discussed with our professors all the options of what to say, how to act, and now I have an understanding of how to treat a person in such moments,” says Anastasia.

“They explained to us that you don’t have to keep the information about the disease from the child, but you have to communicate it the right way. Bluntly stating “You have HIV” won’t be enough, they just would not get it. You have to explain it first. It’s best if you come up with a game,” says the student, sharing what she learned during the training.

A herald of future innovations in the university’s program, UNICEF international consultant Magda Conway visited Kazakhstan in 2018. She taught local professionals the basics of psychosocial support for children and adolescents living with HIV.

“I saw a solid systematic approach which involves not only treating the disease but also taking care of the child’s family,” comments Larisa Matsiyevskaya, associate professor at the Department of Neurology, Neurosurgery, Psychiatry and Rehabilitation Medicine at Karaganda Medical University.

Her deep interest in the patient-centered approach culminated in her intention to create an appropriate textbook.

“Why are we so interested in psychosocial support? Because we are already an experienced audience. We have dealt with these problems,” explains Anna Knaus, associate professor at the Department of Infectious Diseases and Phthisiology at the Medical University of Karaganda.

After compiling a training manual authored by a number of international and national specialists, with support from UNICEF, the professor and her colleagues proceeded to organizing the training.

“This is such a comprehensive work! Such a scale!” she notes, saying that psychosocial support in the form of five separate topics was introduced in different departments. For example, it was included in the curriculum of HIV and tuberculosis, diabetes, cerebral palsy, and early childhood autism studies.

Besides students, the project’s target audience included social workers and teachers at medical institutions across the country. “So many people expressed their interest so quickly that we had to postpone the launch of the course, because applications kept coming in,” says Knaus of the unexpected popularity of the course among her colleagues. Nearly 150 undergraduate specialists, including internists and general practitioners, psychologists and psychiatrists, pediatricians and epidemiologists, participated in the latest round of training.

“In fact, we covered all the professions we need in our multidisciplinary team,” stresses the professor, emphasizing the crucial component of psychosocial rehabilitation of children with chronic diseases.

“An infectious disease specialist or therapist alone cannot achieve the compliance* of a patient with HIV infection or diabetes mellitus. You need a nurse as an assistant. If it is a child, you have to work with the parents. A social worker is definitely required. Probably even a lawyer. When we work as a team, we get results,” says Knaus.

“With HIV, our patients shy away from taking their medications because they’re afraid of the stigma, the labeling. They are afraid of revealing themselves,” continues Knaus. “These fears impact their lives, their treatment, and their social adjustment process.”

“Even among first-year medical students who are well aware of ways to prevent HIV transmission, the stigma is prevalent,” says Knaus.

Today, the professors admit, there is still no consensus among medical workers in Kazakhstan as to whether or not children and teenagers should be informed about their positive HIV status (as recommended by UNICEF). Not all doctors here are ready to give professional counsel or find out why a patient is not taking the prescribed medications. Meanwhile, this is the only way to overcome the negative stereotypes in society.