Jim Lees was formerly Coordinator of HIV Support Services, Larkin Street Youth Centre, San Francisco, California, and India Program Consultant for Street Kids International, Toronto, Canada. Currently director of Mapintee, a non-profit organization developing learning programs that address the emotional needs of street youth around the globe.
Homeless/runaway/street youth throughout the world share histories of rejection and betrayal by families and society whether it be for reasons of poverty or family and parental difficulties. Though they leave their families in search of improved material, physical and emotional conditions they are met on the streets by a world of further rejection, violence, rape prostitution, drug abuse mental and emotional disturbance economic marginality and hunger. Stigmatized, alienated and exploited, the risks children face for violence, drug abuse and HIV dramatically increase when they come to the street. While all three of these risks are deeply intertwined, no child's life should be reduced to the issues they face. The challenges of HIV prevention are complex and many and should not be divorced from the entire set of needs of each child as a whole and from HIV treatment itself.
This paper will address the psycho/social treatment issues of street youth with HIV and AIDS and the challenges for the adults who work with them. The lessons come directly from numerous caring and bright young people with HIV and AIDS living on the streets of the United States and India to whom the author expresses his heartfelt thanks.
1. Don't reduce the infected youth to HIV and AIDS. HIV and AIDS do not eliminate the other issues street youth face daily. The struggle to meet daily needs and counter threats of violence continue. For most street youth with HIV and AIDS, the disease itself has a lower rank of priority in their lives vis-à-vis the need to find food, a place to sleep and a place where the threat of violence is less immediate. Presence of HIV infection can, however, exacerbate the emotional charge surrounding the long list of issues, needs and threats faced by street youth daily.
2. Your job is to create a safe place, as it is with all youth, where the child is able to find support to process the emotional challenges they face. Safety derives from trust, trust established in relationship to the trusted party over time. With the presence of HIV, confidentiality is essential to maintaining trust and a safe environment for each child.
3. Does HIV equal death? Early prevention programs equated the two using the threat of death to frighten youth and adults away from risk behaviours. Medical treatments and the significant numbers of long term survivors has thrown the equation into question. Frightening youth away from HIV with the threat of death fails to understand the very nature of adolescence as a risk taking period. The equation also undermines hope and will to survive in newly diagnosed youth when the same people who have been telling them for years that HIV will kill them now try and give them messages of hope and survival. The equation also encourages fear of HIV stigmatizing and fear of those who have HIV, and discourages testing for HIV.
4. HIV testing is valuable to street youth. While many voices argue against HIV testing for street youth and repeat the phrase that knowing one has HIV is of no use when access to the current high-cost medications of the west is impossible, there are practical reasons for a child to know he or she has HIV. The young person with HIV, however, can benefit through additional practices and programs of an organization. With stress a major factor taxing anyone’s immune system, a child with HIV can benefit from a program that supports maintaining a higher-functioning immune system through opportunities for rest and better nutrition and recreation activities that bring with them times of laughter and happiness . With compromised immune systems, it is the child with HIV who is at risk from the infections of others like the flu, common colds and pneumonia, not others at risk from the HIV infected child. Shelter from cold and damp conditions becomes even more important for such young people to maintain their health. Tobacco use has also been shown to compromise the infected person's immune system from resisting HIV’s advance. The same is true for many of the street drugs children use. Equally important is the reality that when a child first learns they have HIV at the same moment they become seriously ill, the double trauma of learning they have HIV and are sick at the same time is a tremendous burden. This trauma further challenges their immune system, their sense of self and their ability to make sense out of the world and their own lives and future in it. Finally, development of a vaccine that prevents HIV from progressing in the body may not be too far off into the future. Vaccines for diseases have historically been made available throughout the world. There is, therefore good reason for hope.
(One note: Knowing the number of young people in your care allows you to plan for the services these youth will need in the future. As advocates for street youth knowing the number of youth infected with HIV allows organizations to advocate and lobby for funding the development of the services street youth will require and to set in place many of the systems and services before a crisis level of need is reached.)
5. Confidentiality. All youth have the right to have information about their lives kept confidential. HIV requires building systems into any organization to ensure that any youth’s HIV status remains absolutely confidential. You may need to create a release of information document to be signed by the youth clients specifically for information about their HIV status. Youth have the right to refuse such permission and the adults must comply.
6. Everyone, youth and adults, processes the emotions around their HIV infection at their own pace, in their own time. Respecting this and following the young person's lead is part of reinforcing trust and ensuring safety.
7. It is not your job to judge anyone who has HIV. HIV carries with it enough stigma already. Many youth with HIV struggle with an internalized stigma which increases their vulnerability to drug use and suicide. Moral judgements about any behaviours through which these youth contracted HIV are of no practical use. Your job is simply to provide the best possible treatment and services for every youth your organization works with.
8. Stigma is often the result of unfounded fears and lack of knowledge about HIV. Organizations and individuals should, therefore, provide adequate and continual training on the facts of HIV.
9. No question about HIV is a stupid question. Youth and adults all too often fail to ask critical questions about HIV for fear of being seen as stupid. This is a dangerous dynamic.
10. Sexual desire does not end with HIV infection. Nor does drug addiction. Youth with HIV are at risk of infecting others and of being re-infected themselves. Risk behaviours need to be confronted clearly, simply and directly.
11. Don't put anyone with HIV into their grave until they are ready. HIV as a disease is a process that progresses at different rates with differing disease manifestations in each individual. Predicting the health and longevity of any particular youth becomes a needless and impossible task. It is best to simply stay with the youth’s agenda at any moment, planning for various scenarios, but not predicting the future.
12. Provide an environment where young people are able to process their emotions around their HIV/AIDS diagnosis. This requires directly confronting stigmatizing words and behaviour by the youth’s peers and by the organization itself. It also requires that each staff person confront their own internal feelings, fears and how they, too, may be stigmatizing others with HIV.
13. Disease progression markers are times of increased stress, and therefore times of increased vulnerability and risk for harmful behaviours. The initial diagnosis is an obvious point of stress for any youth. So, too are the occurrences of each new opportunistic infection, the AIDS diagnosis, visible changes in body structure and hospitalization.
14. Youth with HIV have the right to make decisions about their medical care, and the right to refuse it. This issue raises numerous personal and ethical concerns that each organization working with youth with HIV must address. Remember that young people are capable of discussing these issues rationally, intelligently and from personal experience and should be a part of the organization's discussion.
15. Peer support groups of youth with HIV/AIDS are essential and form an important place where youth can process their infection and begin to get past the stigma, alienation and isolation they experience. Advocates for these youth should look to such peer groups for direction as to their organization's best role and function with these youth.
16. Increased medical knowledge required by all people working with HIV. Symptoms of disease previously unfamiliar to child care workers must be learned, with timely referrals to medical personnel.
17. Sometimes acceptance of HIV/AIDS diagnosis never comes. While some youth are able to come to terms with their own illness and potential death, others cannot. Death can be filled with betrayal, bitterness, fear and anger. Don’t romanticize death. Simply be present with the youth in their life during their dying. Remember, young people with HIV and AIDS are living with, not dying of HIV and AIDS.
18. The emotions surrounding each person's death are different. The process each person goes through around their death is different from all others. The key is to be with the young person throughout this process, listening carefully, supporting their agenda for their own life and their own death.
19. Young people are capable of discussing their own death and often want to do so. Your role is to offer to listen and wait until they are ready, never to force the discussion.
20. You cannot prevent death, but you can provide dignity in the dying process, in the death itself, and in the remembrance after death. Each death and how it is handled is watched closely by other youth who know their own death is certain to come.
21. Rituals around death are important, for the child him or her self, staff members and for peers of the youth who has died. Funerals and memorial services allow other youth and friends to come together and begin to grieve the loss of a peer and a friend.
22. Fear of infection by proximity is not uncommon and should be recognized and discussed by staff members. New doctors and nurses often fear "catching" death as they work with very ill patients. So, too, do many caring and thoughtful child care workers fear "catching" HIV because they spend many hours with children who have HIV. It is an emotional reaction even when the intellect knows there is no possibility of having contracted HIV from the children worked with. Discussing it openly and freely within a staff support situation prevents the adult worker from stigmatizing themselves because they have these feelings, or from acting out their fear by distancing themselves from the children and expressing anger toward them.
23. Child care staff must find effective support mechanisms to process their own feelings and stresses from working with young people with HIV and AIDS. The organization may or may not choose to provide an HIV Team Support Group for its workers. Supervisors should ensure that all workers in their charge have good systems of support for dealing with the unique and multiple issues that inevitably arise in adults working with children with HIV and AIDS.
HIV and AIDS among street youth is a tremendous personal and professional challenge to those who work with youth and to organizations. We are challenged to examine our attitudes and fears of disease and death. Simultaneously, we must learn new skills while being willing to re-think our current ways of operating. Ultimately, HIV/AIDS is about life and how to live it, no matter what the situation. "Dying is the easy part, living is the hard part," one youth told me. For dying and for living, youth you work with will turn to you for direction. The answers, you will learn, lie within each individual young person who comes your way. Your role is to provide these individuals and all youth with support for building good lives and living their lives, no matter how short or how long, as well as they can.
From Child & Youth Care, 19(9), September 2001