Introduction

Children born HIV-positive who are ageing into adolescence and young adulthood are a unique, emerging population. The issue of their sexuality is an uncharted domain. Never before has there been a group ofteenagers and young adults who acquired HIV perinatally and who have lived long enough to have reached the complicated period ofnormal development that includes experimentation with sexual activity and managing the choices involved in long-term relationships and childbearing. Never again will there be a population in this particular situation, born to a group of care-givers unprepared to deal with the immediate and long-term issues of the then new HIV epidemic at a time when there was less hope for the survival of an HIV-positive child.

The focus of this chapter is derived from, and illustrated by, clinical work with children and young people who were perinatally infected with HIV. Their HIV-related medical and mental health care was initiated when they were infants and toddlers. Of primary concern in the early years of the AIDS epidemic was the high mortality rate. From a medical standpoint and in the minds of caregivers, there was an expectation that children who were HIV-positive would have a short life. As the nature of the epidemic has changed, so have circumstances surrounding the medical care, the ways children learn they are infected and the responses of those around them. Disclosure of HIV status generally and disclosing to individual children who are affected has been a dominant concern for caregivers and health care providers in the past two decades (Lipson 1993; Tasker 1992; Wiener, Battles and Heilman 1998). Whom to tell, what to tell and when to tell have been well researched and are very familiar issues for those professionals who work with people with HIV (Ledlie 1999).

For this particular group of children and young people, their entire lives have been affected by the challenges of coping with HIV, a condition that has taken two decades to better understand and treat. The legacy of the AIDS epidemic is integrated into the emotional framework of those living with HIV. For the most part, children who were perinatally infected have (or indeed have not) learned about their condition in a variety of ways. Their lives carry with them the same uncertainty about the future that they have carried since birth.

Medical advances have allowed for the early recognition and treatment of HIV and for a much more positive outlook on longer-term survival. Developmental issues that impose challenges for families in which there are no underlying medical conditions impose themselves equally on the lives of HIV-positive youth. In the course of routine development, children, by the time they reach adolescence, begin to establish a perception of themselves and their future. It is common for them to see all things as being possible and within reach (Erikson 1950). Many young adults will not have experienced loss and, for those that have, it is often the loss of a grandparent.

The perceptions of the future of HIV-positive teens and young adults are challenged by what they believe their life course will be, what they know about those family members who are affected or who have died of HIV and the reality of their medical situation. In the United States, in addition to the realistic facts of their own situation (minority ethnic groups and socio-economically disadvantaged groups are affected disproportionately by HIV/AIDS), teens and young adults must live in a society that infrequently embraces those who are HIV-positive. The honesty with which a teen or young adult approaches relationships with others will be influenced by a myriad of circumstances, often based on the individual's past experiences. The experience of their own HIV status, how they perceive that their HIV-positive family members have been treated, the outcomes of each family member's illness and what their family relationships have been like will all influence their actions on facing their first and subsequent physical and emotional relationships.

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