Keeping it Real: HIV Prevention and Street Involved Youth in Uzbekistan
A Child Quite Used to Neglect
In the Central Asian countries of the former Soviet Union, such as Uzbekistan and Tajikistan, continued economic difficulties, joblessness, and social change are largely responsible for increased heroin/opiate involvement (drug use and trafficking) and diminished contact between youth and their parents. Adults struggle to make ends meet and have less time to spend with their children. Rural to urban migration has meant the fragmentation of families and kinship networks once a strength and source of resilience among Central Asian cultures. There are more female single headed households due to the migration of men to other countries or cities in search of work and economic opportunity. The financial difficulties within families have led to declining school enrollment, and schools once free in the Soviet Union are now costly, as parents have to pay teachers and pay for supplies. Youth have few if any recreational or vocational options outside of school.
Research shows that alcoholism in families and domestic conflict and abuse are associated with youth moving out on their own. In Uzbekistan and Tajikistan, poor youth or those who are homeless due to poverty, parental alcohol or drug involvement or domestic violence, or just absence, are compelled to work for immediate survival, yet they have no rights to work and no papers that allow them entry into legitimate economies. Throughout Central Asia there are no social services—housing, meals, healthcare, psychological counseling—for the thousands of street-involved youth who are living full or part-time on the street. In a real sense, amidst political and economic upheaval and social disorganization in countries of the former Soviet Union, millions of youth are being socialized into risk.
The means they find for their survival and escaping poverty are long bets, entailing gray and black economies, criminal, underground or marginalized relationships and associations (often including adults), which further increases their isolation and alienation from normative structures and support. This in turn increases their vulnerability to physical violence, sexual abuse, and diseases such as HIV and hepatitis. It is fair to assert that their impoverished conditions, including the structural forces that constrain individual agency and limit access to resources, and their lack of rights and status by virtue of being children become embodied in the decisions street involved youth make concerning risk.
Building Social Protections for Street Youth
While harm reduction programs targeted to vulnerable youth need to focus on reducing immediate risk, and to be proactive by bringing services to youth in settings that are comfortable for those most “hidden” or “hard-to-reach,” they also have to build or strengthen social protections, especially in countries where none exist. These kinds of structural interventions include ways to build what sociologists call social capital-- tangible and intangible social, material and affective support that, particularly in Central Asia, people could rely on through thick and thin. Historically, many had social capital by virtue of the family and village where they were born and would die. But today, with rural to urban migration within countries and across national borders in search of work and jobs, fragmentation of families, and stresses on adults, social capital is something people have to consciously seek to survive and thrive. Robert and Mindy Fullilove and Lesley Green, U.S. social scientists, describe social capital as “resources that result from social relationships, and that enhance an individual’s or a group’s ability to function and achieve a given set of goals and objectives.” They go on to make an important point for all working with street youth: “in communities where social capital is abundant, children are strongly supported in their efforts to adopt positive adult roles by their interactions with family members, neighbors, teachers, and the adults with whom they have contact.”
Programs in Central Asia adapted from the model of Street Kids International focus on bring pragmatic and realistic education to street involved youth on their own turf or ‘where they are at.’ This entails bring street youth together in a setting that is in close proximity to where they hang out and in a physical and social environment which is easy for them to come in, safe, comfortable, and non-judgmental, and where adults, often adults who have been on the street themselves, are empathic. To be empathic means (1) setting aside one’s moral or personal judgments about how youth ‘should be’ or how people ‘should’ live or what is right and wrong; (2) accepting the young person for who they are at the moment and giving them the benefit of the doubt that they have come with their best solutions at this time; (3) tuning in (as if to a frequency on a radio) and actively listening and encouraging them to talk about their perspectives on their experiences.
Often young people feel uncomfortable when confronted with a lot of questions, especially from adults. However, they may feel more empowered to participate if other youth like themselves are present and if they can help set the agenda and speak for themselves rather than in response to a series of survey like questions. This can be effectively accomplished through role plays or skits that the youth organize and enact themselves in front of the group. They can describe what is going on in the skit and how they feel in the roles they are playing or in the situations in which they are involved. From here, they can be encouraged to discuss how situations come to happen in this way, what works for them and what doesn’t. If they treat the skit like a scripted situation in which they have acted before, they can look critically at particular bits of scenes in the script and suggest possible changes and different outcomes of the scene, all from their perspective. They can reenact the scene, even change actors, or replace one another, and they can actually see for themselves how realistic it is to change how a scene plays out, how they play their own role, and whether outcomes can be different.
An analogy here is that the adults who are running the program are not in a sense inviting the youth to a meal and ordering the food for them, but instead inviting them to prepare their own meal. While this involve a process and requires skills, reflection, and patience on the part of the adult, it has been demonstrated to lead to development of thinking, attitudes, and behaviors that youth are more likely to use when they are back out on the street and on their own. In a sense, the program is not creating an educational or behavior change product for the youth to consume, but instead fostering a learning environment in which individually and as a group, youth are identifying their own problems in their own words and organizing themselves to respond more effectively to get their needs met: they are creating the product that they will consume.
This is in part based on the philosophy of Street Kids International where staff made a distinction between giving youth a game or puzzle or something to construct from fixed assortment of pieces and where all the instructions were spelled out on the inside cover of the box or on a piece of paper that came with the game or where along with the assortment of pieces, they were given instructions to make a choice from a set of possible solutions, and where youth acquire some knowledge and practice in a practical way and then are empowered to create or construct something where they can apply the knowledge or principals, practice this, learn by trial, error, and reflection, and then be able to synthesize this knowledge into their own toolkit and integrate or adapt it to the realities in which they live, i.e. if they know what they are doing, they can create something from what is available to them in a given situation.
In this model of working with youth, on survival or life skills, on HIV prevention, on HIV testing, the professionals or peer educations act as facilitators not powerful experts. They rely on the process they are facilitating to create an enabling social environment, where youth feel comfortable gathering together formally or informally, where individually and as a group they feel encouraged to identify situations, experiences, and problems as they see it, and where the facilitators are able to assist the youth in prioritizing their concerns and creating a tool kit of practical information, concepts and skills that can help them back out on the street to ensure that they have food, clothing, and shelter from day to day, that they are physically as safe as they can be, and that they can be more competent in the everyday life world where they socially interact, do business, and find emotional and psychological comfort and support.
This programmatic approach interests youth because it is action oriented, allows them to interact within a peer group, and provides them with experience where they can immediately acquire street and business skills-- the toolkit-- that equips and strengthens their resilience in the challenging street life and family life in which they are more than likely to be on their own and to have to do thinking and make decisions like adults.
The Story of an HIV Prevention Program for Street Youth
The history of a street youth program called “Safe Horizons” offers another example. At a time when the crack cocaine epidemic was at its peak in NY and HIV infection rates were still climbing, Edith Springer, a social worker and early harm reduction advocate, and Rod Sorge, a young pioneer and activist in needle exchange when it was still illegal, helped develop an outreach program among street involved youth who were using crack and were engaged in sex work. Street involved youth were paid a small but meaningful weekly stipend to do outreach work and HIV prevention within their peer networks and to participate in a weekly group meeting and training. Over months, assisted by Springer and Sorge, but facilitated by revolving group members, the group developed their own contract for how the group would function, which was then agreed to and followed by its members. Group meetings included plans or preparation of food of the food they would consume together during the meeting (to ensure that at least once a week they ate well), debriefing from the week’s outreach, discussion of personal issues, larger group concerns, and problem solving.
In this program, the young people were seen as “workers” who came into the program from a position of strength individually and collectively as helpers rather than as needing help or as “problems” themselves. This was important because many of the youth had troubled histories of asking for help from adults. At the same time, Springer noted that she was in a helping or therapeutic relationship with her young workers. As trust built among members, within the group, and with her, it became more okay to ask for and rely on help. The youth had peers but now they also had a constant adult presence who respected them, earned their trust, and mirrored back to them, a loving and affirmative (positive) view of themselves.
The groups showed a similarly flexible approach, and positive results, when it came to drugs. While the groups were not drug-free, members learned to come to the group, in a sense,” fit for duty,” which meant they had to be present through the group and be functionally interactive to receive their pay or stipend. This meant they had to decide through experience to stop using drugs at least a few hours before the group met so that they could stay awake, that they had to monitor their drug use so that they could participate and not disrupt the group or come in and out of the group. Showing up on time and staying through the group was a perquisite to weekly payment. Limiting or putting off drug use until after the group meeting was associated with postponement of gratification, which is a valuable life skill. Discussions and enactments of specific encounters or scenarios which involved drug use, dealing, or sex work or relationships led to the development of judgment, where individuals could learn from each other about how they could use past experiences of their behavior or interactions to predict the future and inform better decision making and self-regulation. Conflict resolution and compromise using “real- time” issues that emerged in the group allowed members the opportunity to experience and learn that it was possible for them to get something of what they wanted while someone else could get what they wanted. Many youth coming from violent households and life on the street assumed that if they got what they wanted it meant ‘ripping off’ someone else. The rotating facilitation of the group allowed role and leadership development and also allowed members to understand from a facilitation perspective what it is like to manage the group when someone or a few are not playing by the contract. These basic life skills and capacity building activities emerged for Springer through the group process and were not developed beforehand for a grant or “top-down.”
In many countries there are two competing frameworks used to conceptualize illicit drugs, drug use and the people who use drugs. One sees criminal enforcement as central, while the other is more pluralistic and relies on the pragmatic, evidence-based, and incremental approaches of public health. Looking back today upon the era of American Prohibition, when the production, distribution, possession and consumption of alcohol were illegal, it would be seen as ludicrous to assume that the tens of thousands of people who flouted the law and drank alcohol were doing something pathological, or were alcoholic. Yet today, the dominance of zero tolerance ideology has led to the idea that anyone using an illegal substance is therefore a drug abuser or addict who is doing something pathological and must be brought under control. Youth, particularly—seen as an uncertain or uncontrollable force by authorities of all varieties—are particularly liable to be brought into the sphere of enforcement for any drug use. In the U.S., a consequence of this is that more young African Americans—far more than are enrolled in institutions of higher education—are involved in the criminal justice system for marijuana use. They, like drug users elsewhere, are either incarcerated or are compelled to identify themselves as addicts and enter treatment for addiction as an alternative to incarceration.
Public health practices that do not require drug users to relinquish all claims to autonomy before receiving help, by contrast, or those that recognize that abstinence is not the only desirable outcome are frequently illegal, unfundable, or insufficiently supported at the national level. Many governments keep such efforts as perpetual “pilot programs,” effectively delaying for years the comprehensive approaches that can contain injection-related HIV transmission. The clearest example of this is harm reduction programs such as needle exchange, substitution treatment, or overdose prevention, which offer a public health alternative to the criminal model.
Harm reduction, which emerged from grass roots community efforts, is not a top down approach like drug enforcement and relies on the active participation of drug users in design and implementation of programs. Consistent with public health practice, harm reduction seeks to have the greatest impact by proactively reaching drug users in ‘natural settings’ and engaging them on their own terms. Harm reduction services are low threshold, which means they do not rely on labeling or diagnosis, do not demand readiness or commitment to major change, and are shaped around engagement and retention in user friendly services and activities rather than an exclusive outcome, such as abstinence.
Harm reduction is especially important today in countries of the former Soviet Union where the HIV epidemic is fast growing, injection drug driven and overwhelmingly among youth. Yet the application of harm reduction among youth is fraught with paradox. On the one hand, harm reduction is rooted historically, particularly in the Dutch and Merseyside England models, with the notion that intensive drug involvement and experimentation for many of us is concentrated in a young period of our lives that we will move through. Harm reduction is an effort to minimize the associated risks. For youth, drug involvement can be associated with generational individuation and separation from parents and societal norms, as well as formation of their own cultures. Youth are likely to “try on” different thoughts or beliefs, ways of presenting themselves, identities, friendships or social groups, and commodities from clothes to music to body adornment to drug use. From its beginning, harm reduction engaged youth on their turf and terms, emphasizing pragmatics rather than dramatics, to assist youth with the information, skills, and means to reduce the risks associated with this often challenging period in their lives. The idea is that when they move on—and for the majority of people who use heroin, for example, do not go on to develop a long-term habit or addiction—they should not carry the added burden of hepatitis, HIV, or drug dependence. Youth wouldn’t move on if they didn’t survive.
David Nish, the current director of Safe Horizons, the harm reduction program for street involved youth described above, points out that most of the principles of harm reduction are good social work practice. Its principles include recognizing the autonomy and self-determination of clients, setting one’s own cultural or personal baggage aside to attune oneself to the client’s expectations, focusing on allowing people to set their own incremental goals for change and move at their own pace, and avoiding labeling or diagnosis which may turn people off. These ideas, however, go “out the window” when, Nish argues, the target group is underage youth, and especially when there they are involved with sex work and “hard” drug use. Whereas with other groups of drug users, we might question the received beliefs or normative frameworks that characterize the population, when we are dealing with youth and sex work or drug use, we are more likely to accept the norms as self-evident, as reasonable or as a given, which in turn limits our ability to do harm reduction.
In fact, there is a strong tendency to universalize youth across time, across the globe, and across social strata within regions or countries: what they should be, how they should live, what they should do. In fact, the conditions in which youth live are anything but universal. This one-size-fits-all approach is especially problematic as it applies to street youth who are often living on their own, as adults, without assurance of basic survival needs—the next meal, shelter, clothing, or physical safety. Street kids often live without access to social protections, without a model of self-actualization and, importantly, without benefit of the human rights many adults assume as universal for adults.
Voluntary Counseling and Testing (VCT)
If an HIV prevention program is to reach street involved youth in a substantive and meaningful way, and in sufficient numbers to have an epidemiological impact, there needs to be flexible approaches to counseling, and both counseling and testing components should occur in multiple settings, including off-site stations close to the settings frequented by street youth and a vehicle that would allow maximum mobility.
Considerable research and international organizations, including WHO, FHI, and NIDA, recommend the model of peer counseling, where older and more experienced youth with street knowledge and credibility are able to easily enter informal youth networks, interact appropriately in the street culture, and, at the same time, know how to introduce something new, which the youth might not otherwise get on their own, in a manner consistent with the values of the social milieu, i.e., in a non-threatening, disruptive or awkward way.
A critical aspect to producing an effective HIV prevention program is to have input from and involvement by these older peers starting at the earliest stages of program design. Fundamental to the effectiveness of the program to reach, involve, and motivate youth is to devote considerable attention to recruiting staff, team building, intensive and ongoing training, placement and a practicum, and supervision and support throughout implementation to ensure that the program is on track, i.e., the activities are consistent with the objectives, the population identified for targeting is reached in sufficient numbers, in the settings that are identified, people were engaged and participated in the program activities and, once these criteria are satisfied, for quality assurance, and finally to assess effectiveness.
What is VCT?
Since voluntary testing and counseling is to be a feature of the program for street involved youth, staff should understand what voluntary counseling and testing is, how it has evolved, what are best practices and why, and what are the principles that should inform design and implementation in Uzbekistan. For example, the VCT program goal is not to get people tested; the goal is to have people know their HIV status in a way that they can make use of the information: what it means, and what they can do if the results are negative or positive, i.e., if they are uninfected to stay uninfected, if they are infected, to access treatment and care to stay health, and to avoid another round of transmission to others.
In addition to core principles, three findings should inform program design: (1) the synergy of HIV prevention and treatment and care; (2) the need for innovative and flexible approaches to counseling, which are appropriately matched to the concerns, interests, and readiness within groups of youth; and (3) the use of multiple sites for engagement and service delivery to maximize availability and access to services. Since street involved youth are a relatively mobile population the program needs to be mobile.
Emphasis needs to be on identifying and reducing barriers to VCT for youth, and eliciting, understanding, and responding to perceived “negative” effects of testing or getting involved in a system of healthcare. Motivational approaches to counseling should draw out, explore, and resolve ambivalence to testing, and to clarify benefits of knowing one’s HIV status. Services for HIV prevention and treatment and support need to be built up densely around VCT, where again, knowledge of one’s HIV status means one can take specific health related actions. The services need to be personalized and interactive.
If there is access to HIV treatment and health care in Uzbekistan for street involved youth, the benefits of knowing one’s status increase dramatically. Without these services, knowing one’s status can seem like another abstract worry, another threat or anxiety that they are unprepared for and have to shoulder alone.
Benefits of Knowing One’s HIV status
- Creates more realistic self-perception of client’s vulnerability to HIV
- Promotes or maintains behaviors to prevent acquisition or further transmission of HIV
- Alleviates anxiety and facilitates understanding and coping
- Facilitates entry to interventions to prevent further transmission of HIV
- Helps client plan and make informed choices for the future
- Leads to early referral to HIV-specific clinical care, treatment and support, which includes managing psychosocial problems related to stigma, patterns of help seeking.
- Creates peer educators and mobilizes support for appropriate responses
- Reduces denial, stigma and discrimination and normalizes HIV/AIDS as a medical and health problem
WHO has drawn attention to the need to rapidly increase access to HIV testing. They have advocated for innovative strategies to deliver counseling and testing in a greater number of settings and on a much larger scale so that more individuals can benefit. All such innovations must ensure, at minimum, the voluntary nature of AHIV testing, informed consent, confidentiality and access to high quality supportive counseling.
Especially for street involved young people, barriers to counseling, testing, returning for results and follow-up need to be fully explored and eliminated.
Core Principles of VCT
- HIV testing should be voluntary (mandatory testing is neither effective nor ethical.
- Informed consent should be obtained, although its definition may vary in different settings and contexts. Elements to ensure true informed consent for HIV testing include: providing pre=test information on the purpose of testing and on treatment and support available once results are known, ensuring understanding, and respecting individual autonomy.
- Confidentiality must be protected
- Post-test support and service are crucial.
The development of VCT over the last two decades: best practices
Voluntary Counseling and Testing (VCT) began in the 1980s with pre test counseling, testing, and post test counseling. Voluntary testing and the confidentiality of test results and of the communication between counselor and client became a cornerstone of effective VCT programs. Depending on the country, this has been defined in different ways or emphasized to different degrees. Referral and easy access to HIV care and support has made the most significant difference to the numbers of people willing to test. Other features have been the recognition of the synergy between HIV prevention and care and treatment, followed by the need for greater flexibility of counseling strategies and sites for these activities in order to engage people “where they are at,” and where they are most likely to be receptive to contemplating VCT. VCT has been broken down into its constituent parts: pretest information and interactive personalized risk reduction counseling, testing, motivating people to return for their results, post test counseling, support, HIV prevention using a “stepped care” approach, mutual help groups, treatment education and disclosure counseling. For people who test positive, early referral to care and support, anti-retroviral therapies, and the treatment and monitoring of ordinary health problems by physicians and nurses trained in infectious diseases and AIDS has become an international standard.
Related to HIV prevention for the sexual partners or drug using peers of people living with HIV and AIDS (PLWHA), are international AIDS programs, for example in Brazil, that showed if an HIV+ person is treated with respect and has access to treatment and support to stay alive and healthy, they are most likely to provide care and support in turn to their sexual partners, and often bring them into an AIDS center or NGO for counseling, testing, and education..
Other findings concerning VCT:
- There is general agreement that VCT is critical to HIV prevention and that it helps to promote and sustain behavior change.
- Innovative strategies need to be encouraged so that more people are motivated to know their HIV status and take the action to test and return for the results and follow-up counseling.
- For every special population, there are barriers and perceived barriers that need to be explored and removed.
- Counseling and testing should be a standard of care for people who
- Have signs and symptoms of HIV infection or AIDS to support clinical diagnosis.
- TB prevalence regardless of sero-prevalence rates.
- All pregnant women, regardless of perceived risk, in order to reduce the likelihood of mother-to-child transmission
Making a HIV Prevention and Harm Reduction Program Work
Our credibility, the trust we establish and our respect for street involved youths’ ability to think critically about what we say is our greatest source of capital with youth, particularly streetwise youth who will compare what we say with their own or others experience. And harm reduction that is sensitive to the process of communicating and relationship building is useful, and even healing, for youth who are sensitive to authority and power differentials. Often youth are not just listening to the content of what we say but how they experience what we say. Are we listening to them? If one of the greatest risk factors for street involved youth is that they have only other youth to turn to, the adults who move into relationships with street youth as helpers need to be comfortable themselves as adults and not over identified with youth or the outlaw life. Youth need adults to be different from them, while at the same time non-invasive, non-authoritarian, authentic people that they can imagine growing up to be like.