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ntroductionThe present stage of development of the Russian society has been shaped by politi-cal, economic and social reforms which have been taking place since the beginning of the 1990s. These reforms have been carried out in rather radical forms, leading to negative social consequences, including growth of socially dangerous diseases, such as drug addiction, tuberculosis and HIV, among others.
According to UNAIDS, there were 34 million people with HIV infection in the world in 2011. According to the Federal Research and Methodological Center for the Pre-vention and Control of AIDS, 703,781 people had been registered as HIV infected in Russia by Nov 22nd 2012. In St. Petersburg, the number of people living with HIV was 51,552.
The modes of transmission of HIV infection have shown that the medical measures to prevent the spread of HIV/AIDS are insufficient. The hopes for a speedy development of a vaccine against HIV infection have not been realized at this time. At present there is an understanding that HIV/AIDS is a social and public phenomenon with specific social and behavioral characteristics (Borodkina 2007).This means that not only me-dical models but also social models of prevention should be developed. It is obvious that social work is one of the institutions which have key roles to play in this process.
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ain directions of social work with people living with HIVSocial work is the specialist activity of professionals focused on the creation of certain conditions which promote the improvement or rehabilitation of the abilities of a person or a group of people. These conditions enable that person or group to act independently, and to independently solve crucial problems in their lives. The methodology of social work can be defined as a system of principles and methods of assistance and support, targeting both individual and groups.
Systems of social work reflect the level of social and economic development of a country, as well as its traditional social norms and cultural values. One of the greatest challenges connected with the HIV/AIDS epidemic in Russia is the establishment of a system of social work with HIV -infected clients and their families. This work could be considered an essential part of social prevention, combining primary, secondary and tertiary prevention.
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There are various approaches to social prevention. M. Blum defines prevention as actions that are scientific, rational and carried out at the appropriate time in order to prevent possible physical, psychological or socio-cultural collisions in either indivi-duals or groups that are at risk (Blum 1981). Depending on the target, the concept of prevention may require further specification. In the prevention of socially dange-rous diseases, like HIV/AIDS, prevention could be defined as the action focused on changing the individual’s risky behavior, changing the group norms encouraging risky behavior, and creating social structures that support safe behavior with regard to diseases. Social prevention of HIV/AIDS is social institute which focuses on the de-velopment, active assimilation and use of socio-cultural norms and skills that reduce the risk of disease transmission (Borodkina 2007).
Social work with people living with HIV involves several levels of prevention. With respect to these clients, there are secondary and/or tertiary methods of prevention.
At the same time, both primary prevention methods and social work aim to prevent other people becoming infected with HIV. This preventive component is one of the distinguishing features of social work with HIV-infected people. HIV/AIDS prevention is a complex process, and social work deals with five main interrelated components:
(1) legal provision, (2) policy context, (3) availability of services, (4) accessibility of services, and (5) participation and rights.
Social work with people living with HIV is particularly characterized by the clients’
multiple problems. In addition to more general social problems, people affected by HIV face the medical, psychological, social and physical problems associated with their HIV infection. Above all, they are affected by stigma and discrimination. HIV/
AIDS-related stigma and discrimination significantly reduce the effectiveness of HIV prevention and care programs. Stigma has a negative impact on effective prevention by discouraging individuals from participating in medical and social interventions and from seeking information on how to protect themselves and others, thus deepening the adverse impact of HIV on their lives. Stigma and discrimination worsen the si-tuations of the clients and their families. Stigma also affects the non-infected family members. Stigmatization usually leads to social exclusion, breaking established so-cial relations.
According to the results of different case studies, stigma and discrimination are the most pressing social problems for HIV-effected people. The anonymous survey of 660 respondents, conducted in eleven Russian cities, demonstrated that more than 52% of the respondents experienced various forms of discrimination or stigmatization by others: they were the subject of gossip and they faced insults, harassment, threats and physical violence. (Report of case study 2011). For example, people with HIV were not allowed to participate in family or community activities; they were denied medical care; they experienced difficulties with rental housing; many lost their jobs;
there were many problems with non-infected family members.
In addition to external factors, HIV causes inherent internal stigma: people living with HIV condemn themselves. They experience a sense of guilt and shame, they typically have low self-esteem, and they often feel that they deserve punishment and should
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be punished. The majority of respondents, 56% of those with HIV-positive status, made the following decisions: not to have children, not to attend health facilities even when there is a need for this, not to marry, not to have sexual contact, to isolate themselves from family, relatives and friends, to quit work or school, to give up public life. HIV/AIDS affects the lives of different people, with different personal experien-ces, sexual preferences and cultural levels. HIV/AIDS is changing not only the lives of those who have HIV, but the lives of those who care for them as well, and sometimes those who simply happen to live nearby. As a result of the stigma, a ‘devaluation’ of the person takes place, a reduction of his/her social status.
It is possible to combat stigma and discrimination by distributing information about HIV / AIDS, protecting the rights of people living with HIV, providing social and psychological support for HIV-infected people, providing training on how to live with HIVinfection, advising where and how to get medical treatment and care, and raising awareness about the protection of human rights and support for other excluded per-sons and groups. These tasks have become part of social work with individuals and families affected by HIV.
One serious issue associated with HIV is that stigma and discrimination apply also to non-infected family members. The family is fenced off from relatives, friends and acquaintances, and ends up in a social vacuum.
According to Koltzova, the following factors give rise to problems which clients af-fected by HIV are unable to resolve on their own (Koltzova 2007):
• the client does not have sufficient means to resolve their financial problems (payment of housing, etc.);
• the client does not have a sufficient information regarding the issues; gaps in knowledge prevent the client from developing the necessary strategies to solve problems, so he or she turns to a social work professional;
• the client does not have a sufficient emotional or physical energy, so balan ce needs to be restored before the accumulated problems are solved;
• the client is experiencing emotional stress, which blocks rational understan ding of the situation and positive attitude towards adaptation; the task of the social work professional is to free the client of the emotional pressure and help them in adapting;
• the client’s own character is a source of problems, his or her actions being mostly based on feelings and emotions; the task of the social work profes sional, who has been trained to identify typical client behavior with respect to the situations and people surrounding the client, is to explain the situation and to solve the client’s emotional problems.;
• the client lacks planning skills and adaptive thinking skills, assuming prob lem situations to be intractable; one of the tasks of the social work is to solve problems by teaching the client to solve them himself.
An important aspect of successful social adaptation is the involvement of the family’s resources to help its members to adapt. Another key factor in the process of social
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adaptation is the willingness of the family to take care of their infected family member.
Work with the families of HIV-infected clients is one of the main directions of social work in this field.
Another important direction is community work. Social workers are involved in local community life and different health-related social activities, and from the very begin-ning of the epidemic they often become the initiators in providing various services to people with HIV/AIDS and their families. Community-based programs are also one of the crucial directions of social work in the sphere of HIV–prevention. In these pro-grams, preventive measures focus on different subgroups within the population, or on particular regional units. Social work programs focusing on HIV/AIDS are generally targeted at two types of communities: firstly, inhabitants of a certain area (for examp-le, municipalities and urban areas,) and, secondly, certain social groups which are, for behavioral and social reasons, at risk of HIV infection - for example, drug users, female sex workers and homosexuals (Borodkina 1991).
During the greatest periods of stress and difficulty connected with HIV-positive status, another important task of social workers is the creation of crisis intervention teams which provide legal aid and social and psychological support to clients and their fa-milies. Usually these teams consist of volunteers recruited by social workers. These volunteers are trained and remain under continuous supervision, receiving further training on an ongoing basis.
Another form of social work concerning people living with HIV is the creation of sup-port groups for clients, family members, partners and care providers. In addition, social workers have been taking an active role in various educational and training programs from the earliest years of the epidemic.
Due to the fact that HIV-positive clients are usually socially passive people, profes-sionals need to build up their work in such a way as to increase the activity of the clients, to boost their self-esteem, and to encourage them to develop a desire to solve problems independently. This can be achieved when the social workers use empowerment-oriented methods.
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mpowering people living with HIVThe main components of the process of empowerment are self-activation and interaction. The professional acts as a partner, allowing the client to take a proactive position in his/her own case. Social problems are decreased by facilitating the ma-ximum amount of family participation in the solution of problems. The empowerment process is focused on the creation of conditions which promote the development of the clients’ independence and their ability to manage their own lives. The empowe-ring approach aims to allow the client can see himself /herself independent of the opi-nions of people around them. Thus, the client can create their own self-assessment and they can use this self-assessment to independently solve problems.
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Empowerment demands realizing four conditions (Parslou 1997; Rappor 1984, Wil-son 1996):
• creation of joint partnership with clients;
• emphasis on the opportunities open to clients, instead of their difficulties;
• maintaining the “dual focus” on both individual and social environment;
• recognition of clients as active subjects with related rights, responsibilities, needs and requirements.
In the empowering approach it is assumed that each person has to make their own decisions, because each individual is a master of their own life, and each individual’s goals are unique to that person. Social work has historically developed in the di-rection of expanding rights and opportunities. The client makes efforts to receive resources which will strengthen their well-being. Through this process, the client will achieve control over their own life.
Within the framework of the empowering approach, the “union” between the social worker and the client is understood as consisting of three parts:
• a general understanding of the specific problems facing the client;
• joint commitment to the solution of problems;
• tolerance towards the client, on the professional’s part, independent of the client’s sex, race or belief system.
A primary condition for the unique cooperation between social worker and client is the continual interplay between effort, ideas, resources and - most importantly - mutual respect. Understanding the concept and practice of cooperation depends on a careful analysis of the social, institutional and psychological barriers one will confront on the way to structuring and developing a partnership between the professional and the client. Empowerment is a multifaceted social process that involves an expansion of the rights and opportunities of the clients, enabling them to take control of their own lives.
The client is in a difficult life situation. In order to support him/her to act independently, the professional must work with the client in accordance with the following guidelines:
• mobilization of immediate financial support;
• training in elementary skills necessary for a survival and future well-being;
• empowering the client to develop problem solving skills.
Social workers who work with clients and families affected by HIV have not incorpo-rated empowering approaches into their professional practice to the extent that this is needed. Rather than simply granting the various benefits, the empowering appro-ach is focused on developing the client’s skills and ability to find social resources.
Empowerment-oriented practice should help to overcome the negative impact of HIV/
AIDS stigma and discrimination. Empowerment aims to realize not only the right to be
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free from discrimination, but also the right to privacy, health, freedom of movement, education, housing and security.
Empowerment can be realized on the individual level as well as on the structural level. Realization on the individual level demands from the individual that they ana-lyze themselves independently of the opinion of people and society around them, so that they may raise their sense of self-esteem. The structural level of empowerment depends on the creation of various self-help groups and organizations, and on the involvement of social services in the process of assisting the client.
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tructural aspects of social work practice with HIV-infected peopleIn Russia, the social services to people living with HIV, their families and risk groups have mainly been provided by non-governmental organizations (NGOs), and the situation has remained the same for the relatively long period since the onset of the epidemic. Government social service agencies have not been paying sufficient attention to this problem.
Today the situation is changing, and St. Petersburg has been a pioneer of develo-ping a state system of social support for people living with HIV. Recently, centers for families affected by HIV have been opened, based on the existing system of centers of social services for families and children. However, there is still no effec-tive interaction between the government and the non-governmental organizations that provide assistance to people with HIV and their families. This problem is not unique to St. Petersburg, but frequently encountered in most parts of Russia. The non-governmental sector is still making significant contributions to HIV/AIDS preven-tion. The primary prevention activities of NGOs involve distributing information, HIV prevention in groups of high risk behavior, HIV prevention among youth, provision of medico-social services to individuals within the groups of high risk behavior (primarily drug users and sex workers), and assistance provided to people living with HIV and to their relatives.
At the same time, the NGOs face a number of serious problems: the unstable finan-cial situation, the limited funding opportunities, often dependence from a single spon-sor, which can definitely affect the policies of an organization. Only recently has the situation begun to change, and more funding opportunities have become available to the NGOs to realize their programs of prevention for high-risk groups, training, and education to reduce risk behavior. The involvement of NGOs with the social service system has now become a typical characteristic of Russian social policy.
When dealing with HIV/ AIDS prevention, social service organizations are quite often faced with the difficulty of finding well qualified personnel. This is not only a question of social workers lacking necessary education and experience, but the problem is also manifested at various managerial levels. One of the major problems is uncertain-ty regarding legal regulation of NGO activiuncertain-ty. It is obvious that this field of social work needs new management as well as increased budgets for treatment and preventi-on. Modern management must be directed at (1) raising non-governmental funding,
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(2) effective coordination of both government and non- governmental organizations working with the HIV infected, (3) developing a network to facilitate cooperation in the arena of HIV prevention, and (4) developing new forms of help and self-realization for people with HIV. Naturally, it is also important to structure the social work with HIV infected clients within the framework of the state system of social support. In this respect, very successful structural changes have been implemented in St. Petersburg.
One of the directions of St. Petersburg’s state social policy is the development of a system of social assistance for people in difficult life situations. Families affected by HIV infection have recently been included as one category entitled to assistance.
Comprehensive support for such families began in 2007 with the establishment of a structure for state instituted specialized departments and services.
A network of social support services for people living with HIV and their families now exists in St. Petersburg. The network consists of 18 public offices, situated alongside centers that provide social service to families with children. These offices provide social, psychological and other assistance, as well as medical aid, to families af-fected by the problem of HIV. Some medical establishments are also included in the network. All state institutions and public organizations within the network need to be coordinated to provide assistance to the families in a timely manner.
According to data from the Regional Center “Family” from 2007, 1038 families af-fected by HIV infection had started receiving social support (Figure 1).
Figure 1.The number of families receiving social support on the basis of being affected by HIV infection Among the various tasks connected with HIV/AIDS that are expected of social
Figure 1.The number of families receiving social support on the basis of being affected by HIV infection Among the various tasks connected with HIV/AIDS that are expected of social