With funding from the International HIV/AIDS Alliance, a series of courses were conducted in October through the Regional Knowledge Hub for the Care and Treatment of HIV/AIDS in Eurasia. During these lectures and clinic-based courses, Ukrainian healthcare professionals from some of the most affected regions in the country gained the knowledge and practical skills necessary to provide ART to children and adults. The Knowledge Hub was established in 2004 and is supported by Deutsche Gesellschaft fur Technische Zusammenarbeit (GTZ) through WHO's Regional Office for Europe (WHO/Euro) in conjunction with AIHA. This article details the pediatric training and mentoring courses, held October 11-22.

"HIV infection is the moment of truth."

These words were spoken during a mid-October seminar on antiretroviral therapy (ART) for children. They were spoken quietly, but they deafened everyone who heard them. The woman who spoke them was Svetlana Komar, head of the Infectious Disease Department at Kiev Children's Hospital No.1, who served as an instructor at the seminar. By addressing this statement to an audience of doctors, nurses, and social workers who deal with HIV infection in Ukraine, she switched on a light in the minds of everybody present and enabled each person to examine his or her feelings, emotions, and actions toward people living with HIV/AIDS (PLWHA), their children, and their families. Moreover, her words helped those present realize that, as healthcare workers, they have to do much more than extend a helping hand to their patients, especially now that life-saving ART has become available in Ukraine. They must ensure that patients take that hand and not let go, ever, because antiretroviral treatment is a life-long undertaking.

Despite the fact that Ukraine is experiencing an HIV/AIDS epidemic that experts estimate has infected one percent of the country's population, until recently antiretroviral drugs (ARVs) have only been available to a mere handful of fortunate Ukrainians. In the past, the main reason for this was an acute shortage of ARVs, which had been supplied only in limited quantities to a few medical institutions by the Ukrainian Ministry of Health and various philanthropic foundations, international organizations, and NGOs.

"Since ART has to be taken for life, it can only be prescribed when there is certainty that a patient will be able to adhere to the treatment without interruption and that there will be an adequate supply of drugs for that patient for more than just a year or two," says Irina Raus, a seminar participant and pediatric infectious disease specialist at the Kiev City Center for AIDS Prevention and Control. "We acquired that certainty only at the end of last year when the Ukrainian Ministry of Health purchased ARVs abroad and began negotiations with the Global Fund [to Fight AIDS, Tuberculosis, and Malaria] for a massive purchase of these medications. Before then, it was very difficult to work effectively because the people who were ill were mistrustful, asking, 'What can the AIDS Center do for us?' And indeed, until recently all we could do was provide regular medical check-ups and try to deal with opportunistic infections, so many sick people stopped coming."

ART Arrives in Ukraine
Raus shrugs her shoulders, recounting how this past summer the AIDS Center received enough drugs to commence immediately treating 144 adults and how staff there began trying to make contact with people whose condition indicated an immediate need for such treatment. But as they quickly learned, for many of individuals the medications arrived too late. "We had more than 1,500 people registered, but now that number is much lower," Raus explains, noting that an alarming number of patients on the Center's list have already died. She says that children are among the dead, as are parents of children who are now undergoing treatment. "There are 30 children in Kiev with a confirmed HIV-positive status, 15 of whom are receiving treatment at the AIDS Center. But that's only the children we have registered. The real number is greater, for sure," she notes sadly.

According to data from the Ukrainian National Center for AIDS Prevention and Control, some 7,511 children born to HIV-infected mothers have been registered in Ukraine since 1987. More than 100 of these youngsters have already died, while 273 are suffering from AIDS and in need of immediate treatment.

Practical Training is More Effective than Self-education
The ART seminar took place at the Infectious Disease Department of Kiev Children's Hospital No.1 through the auspices of the Regional Knowledge Hub for the Care and Treatment of HIV/AIDS in Eurasia whose mandate is to develop a cadre of trained medical specialists who can implement ART on a broad scale in the region. Four experts from Russia, Ukraine, and the United States taught an agenda that was structured to encompass the complete spectrum of issues involved in prescribing ART to children — from counseling parents about this type of therapy to clinical aspects of treatment involving the study of actual case histories and a discussion of which ARV regimens are best suited for pediatric patients. A major focus of the seminar was the multi-disciplinary team approach, which involves close interaction among doctor, nurses, social workers, and other care providers who form a single cohesive team. Without this type of coordinated, holistic approach, it is generally accepted that ART cannot be effective.

Seminar participants included professionals from Dnipropetrovsk, Donetsk, Kiev, Nikolayev, Odessa, and Simferopol—the six Ukrainian cities with the highest rates of HIV infection. They explained that they came to Kiev in an effort to clarify a number of questions related to prescribing ART to children because, when the regional AIDS centers received the ARVs last summer and were finally able to begin administering them on a large scale, none of Ukraine's HIV/AIDS specialists had yet been trained in prescribing the drugs. The ones who had any experience at all acquired it with some trepidation and at their own risk, using only specialized medical literature as a guide.

Commenting on the situation, Raus says, "Everything we know about ART, we learned through self-education. We read the literature, translated foreign articles, made inquiries of international experts, and sought advice from colleagues."

Successful Treatment Based on Teamwork
Talking about the role and the obligations of all members of the team, seminar instructor Joseph De Santis, a nurse-educator and coordinator of personnel training in HIV and other blood-borne diseases at the Jackson Health System in Miami, Florida, notes that the social worker is the chief defender of the rights of patients needing treatment.

"When prescribing ART, it is very important to pay attention to the patient's family situation, since his or her adherence to the therapy depends on this. Adherence is the most important aspect of care. Without it, the treatment will have a negative effect because infected cells will begin to develop resistance to the drugs, thereby making the medications ineffective. Only the social worker who visits the patient at home and can evaluate the situation in the household can provide the necessary insight into the home," De Santis says.

He further explains that "If the child's parents are addicted to drugs, compliance with the medication regimen is unlikely and appropriate measures—such as getting social agencies involved and making a decision on who should have custody of the child—will have to be taken." De Santis says there can be difficulties with prescribing ART if family members do not support the child's need for the treatment, the family has no permanent place of residence, or the child is homeless.

In his presentation, De Santis laid out the principles of effective teamwork, stressing the fact that individual members of the team can succeed only if they work with each other and share information about patients on a regular basis. The nurse, De Santis says, should be the team manager or leader, organizing meetings of the various members. "She is assigned this role because she is the one who is in constant contact with the doctor, the patient, and the social workers, and she has the most complete information—both on the people being cared for and on the work schedules of the members of the team. This allows physicians to focus on the clinical aspects of treatment rather than spending time on logistical matters."

Counseling Means Patient Support, First and Foremost
Seminar instructor Yelena Vedmid, a specialist in social work and practical psychology from the Pediatric HIV/AIDS Clinical Center of Russia at the Russian Ministry of Health, introduced participants to the finer points of working with HIV-infected children and their parents. The hospital where Vedmid works has had experience in helping HIV-infected children since the late 1980s when approximately 300 children from various Russian cities contracted HIV while being treated in a hospital. Since 1996, the Pediatric HIV/AIDS Clinical Center of Russia has also admitted abandoned HIV-positive children whose parents are drug-addicts, as well as children born to families where HIV was transmitted through sexual contact.

During her presentations and in workshops with seminar participants, Vedmid laid out psychological principles and methods that can help practitioners build relationships with patients based on trust and create a favorable atmosphere for successful collaboration. In her lectures, she focused on psychological counseling methods that target mothers because they are the ones who bear the full weight of their children's illness. "Studies have shown that most mothers of HIV-infected children suffer psychologically and that their quality of life is significantly lower than that of childless women diagnosed with HIV. Many of them wear their burdens like a piece of clothing, looking obviously haggard and prematurely old. It's important, therefore, for a counselor to help the mother build a bridge from her current circumstances to her previous, more stable situation."

For this to happen, Vedmid says, the specialist counseling the mother needs to anticipate a great number of things and provide a comfortable room for the counseling session. "A good counselor also has to learn to empathize with the patient, to be an 'active listener,' to pose open-ended questions that prompt extensive answers, and to be tactful and guarantee patient confidentiality." Seminar participants rehearsed this method of counseling during practice lessons in which anyone who wanted could take on the role of counselor.

After becoming familiar with counseling approaches and the teamwork concept, participants concentrated on the clinical aspects of ART. Ukrainian instructors Komar and Alla Volokha, associate professor in the Infectious Disease Department of the Kiev Medical Academy of Post-graduate Education, gave detailed lectures on the basic principles of administering ART. Their presentations included an overview of ARVs, regimens used for prescribing or interrupting treatment, and the possible side effects of each medication. Issues of laboratory diagnostics and monitoring HIV infection, symptoms of disease progression, and the diagnosis and treatment of opportunistic infections were also covered. Participants had the opportunity to learn in detail about vaccinations and the importance of a healthy diet for HIV-infected children, to work through tactics for administering ART and counseling caregivers, and to consider issues related to HIV-infected children attending school or day care, as well as the inpatient and home care of these children. In addition, the seminar included a discussion of the WHO HIV/AIDS Treatment and Care Protocols for the CIS and a presentation of the national clinical protocol for pediatric ART, which maps out step-by-step modules for prescribing and administering therapy.

Knowing the Basics of ART Guarantees Effective Care
Practical training in administering ART took place at the Children's Hospital, which works closely with specialists from the Kiev City Center for AIDS Prevention and Control and has been providing inpatient care and ART to HIV-infected children since 2000. During the working sessions, participants analyzed patient case histories and laboratory test results with help from the instructors, as well as learned to how to decide on ART regimens and calculate drug dosages for individual children.

During the practice sessions, much emphasis was placed on therapy compliance issues and the proper basis for prescribing ART. Komar stresses that "access to this therapy does not mean that we should prescribe it too early because this can lead to the development of resistance or can make infected cells mutate just as readily as non-adherence to the drug regimen." She also notes that such a turn of events necessitates extremely expensive and often inaccessible therapy, which can lead to a fatal outcome for the patient.

Although ART is strictly an element of clinical care, instructors tried to involve all seminar participants in the learning process. "It is very important for all members of a team, including social workers, to know the names of all the drugs, their properties, and their possible side effects so they are able to provide explanations to a patient," Komar explains. Nurses also play an important role in administering ART by collecting information about a child's physical status, his or her daily schedule, and his or her diet—all critical elements that need to be coordinated with treatment. "Having this information helps nurses evaluate the mother's ability to give a child his or her drugs and can help the doctor determine which form of medication the child will take more willingly—powder or tablets," Komar notes.

Speaking about the issue of how to maintain therapy adherence among children, Komar says it is psychologically critical that the child associate the medications with positive emotions. To help young patients have such a positive association, members of the team can think up various games and tasks that make taking the drugs fun. For example, a special diary for each child can be created in which a patient is able to mark each dose taken with a sticker or drawing made with a special marker. "This will bring an element of joy to the process of taking the medications," she points out.

As for the psychology benefit to the mother of a child whose is receiving ART, Komar says she believes that having the medications is a very important factor. "A mothers has to see the drugs and know that there are sufficient quantities" to believe her child has a chance.

As a general rule, the stronger the patient's spirit, the more likely he or she will adhere to therapy and the better the results of treatment, Komar acknowledges, stressing that it is the responsibility of all members of a multi-disciplinary care team to put forth their very best human qualities and ethical and moral principles when working with these children and their parents. "Their quality of life depends on each team member not only working to ensure the child's development and adherence to ART, but also helping to root out the stigma attached to HIV/AIDS. That can only be achieved through a positive, compassionate attitude that gives these children and their families a chance to feel like full-fledged members of society."

Going Back Home with Life-saving Skills and Effective Solutions
Overall, the seminar inspired all of the participants. "Our expectations were fulfilled because the course dealt with very complex and instructive cases. Whereas before we were unsure about when or under what conditions to prescribe ART, now we feel more confident.

Moreover, we saw examples of how to manage situations in which regimens are stopped and also had the chance to work as part of a team, which is very important to the provision of care. This kind of rehearsal will help us establish such a system in our locations more quickly," notes Zinaida Ruban, a pediatric infectious disease specialist at the Nikolayev Oblast Center for AIDS Prevention and Control, where 13 children have recently begun receiving therapy and six more are expected to start treatment in the near future.

Irina Prikhodko, a social worker at the Dnipropetrovsk Oblast Center for AIDS Prevention and Care, says the seminar made her realize the full responsibility and significance of her profession. "I've really become convinced of the importance of my place on the multi-disciplinary team and the role social workers play by always being there for the patient, providing moral support, explaining things, and helping him or her to solve psycho-social problems. And I also realized how important it is for me to know my way around the medical side of HIV/AIDS care. This knowledge will not only give me a chance to provide better quality counseling, but will also have a positive impact on my interaction with other members of the team—the doctors and nurses with whom I'll soon be working." Prikhodko says she does not believe that the team approach is being used at the Dnipropetrovsk AIDS Center but plans to bring her colleagues up to speed when she returns. "I think that this is the most effective and reliable method for handling ART patients because adherence is a very difficult challenge. People have to take the therapy for a very long time, so they need constant support from the doctor, the nurse, and definitely from the social worker. I think that we'll be able to achieve this kind of collaboration at our center."

Mentoring Provides Additional Training
After the week-long course, ART instruction continued in the form of on-site mentoring as instructors visited seminar participants in their home cities and worked with the individual teams on the issues related to providing pediatric ART that were discussed during the formal instruction. The first mentoring workshop took place at the Kiev City AIDS Center and is illustrative of the hands-on sessions that continued throughout the country for the next week.

The multi-disciplinary teams from Donetsk and Kiev visited the Kiev City AIDS Center where, under the supervision of the pediatric ART course instructors and AIDS Center staff, they gained hands-on experience counseling children already taking ARVs, examining children who are in need of therapy, and speaking with the parents of current pediatric ART patients. In addition to studying actual cases and discussing various ART regimens, these practical sessions gave the multi-disciplinary team members a chance to explore a number of issues related to the social and psychological problems that families that have a child receiving ART face, or soon will face. AIDS Center staff also shared some of the problems they commonly encounter when providing care and treatment to HIV-positive children.

The multi-disciplinary teams learned that all of the children being treated at the Center had contracted HIV from their mothers and that the overwhelming majority of these women had been infected through heterosexual contact. Many of these children live in families in which the fathers were infected with HIV through injection drug use; most of these men are no longer living. Others are being raised by their grandparents-some because both parents have died, others because their mothers are gravely ill. And, in most cases, these families are in need of supplemental material assistance and social support.

Interviews that took place between the providers and the patients and their parents clearly underscored how the stigma attached to HIV is the strongest deterrent to parents seeking help in a timely fashion. Raus says that many mothers conceal their children's HIV status because they fear discrimination and that it is the children suffer the consequences. "I want to live," seven-year-old Nastya said during one of the interviews, telling the participants why she was taking her medications. This little girl suffers from a severe form of encephalopathy, which has caused motor and speech disorders. Her condition developed because her status became known to medical personnel too late, after the neurological dysfunction had already set in. Nastya contracted HIV from her mother who initially concealed her daughter's status from relatives and from the local pediatrician. Later, when Nastya was two, her mother committed suicide taking the secret of her daughter's illness with her to the grave. Left in the care of her grandparents, Nastya was often sick, but because there had been no mention of HIV infection in her medical history, doctors were unable to establish the cause of the child's worsening condition in a timely fashion. As soon as she started taking ART, Nastya's health improved, but sadly the neurological problems are irreversible. Hers is not the only such case.

"Mothers ask us not to report their child's HIV-positive status to the local pediatricians, but those are exactly the doctors who must know the truth because each child's health directly depends on this," Raus says. Explaining that there is a special vaccination regimen for HIV-positive children and that ART causes many subtle variations in the appropriate selection of medications for treating common childhood diseases, Raus points out another key problem: if an infant does not test positive for HIV at birth, a mother generally does not bring her baby back for repeat testing when he or she reaches 18 months of age and it is possible to make a definitive diagnosis. Raus accounts for this behavior in two ways: "Some of the mothers simply do not want to lose the financial support provided by the government for HIV-infected children and many others simply do not want to know the truth." In either case, she says, it is the children who suffer, so practitioners, policymakers, and public health advocates must insist on defending the rights of children and seek the active cooperation of local pediatricians.

From a medical standpoint, this is the correct approach, but there are reasons why parents have a different opinion. During the interviews many parents and care-givers lamented the fact that the atmosphere at public schools is extremely hostile and forbidding to young people with HIV, yet there are no special schools where these children can learn in a safe and accepting environment. For this reason, most HIV-positive children are raised entirely at home. This means their caregivers cannot work, much to the detriment of the material welfare of the family. Moreover, the ARV regimen calls for medications to be administered every 12 hours, which further hinders the activities of family members and causes psychological and emotional turmoil, as well as physical strain and exhaustion.

For the healthcare professionals involved in HIV/AIDS-related treatment in Ukraine, the availability of ARVs brings the hope that a greater number of HIV-infected people will report to special treatment institutions and that adopting a multi-disciplinary approach to care will improve their quality of life and help dispel the stigma that surrounds the virus. Beyond that, medical specialists say they expect their close collaboration with social and HIV-service organizations to help them better defend the rights of infected children and move the issue to the top of the national policy agenda thereby helping eliminate the grave problems faced by the country's youngest HIV-infected citizens and their families.

(Feature story by AIHA Staff Writer Vira Illiash who is based in Kiev, Ukraine Published in the November-December 2004 issue of Connections, AIHA's on-line newsletter.).