Tim Barrus: New York Times: Explaining Death
Explaining the reality of death to a child also means explaining disease. The subjects of stigma and confidentiality are relevant.
AIDS is not over. That people still die is rarely in the news. Even doctors still list other direct causes of death which can tend to make counting numbers bogus. Getting into care is easier said than done. Staying there is even more difficult. Some people have allergic responses to such antiretrovirals as Abacavir which can cause death all by itself. Extreme poverty also still exists.
Poor children see more death than most. They may become intimately acquainted with moral issues like the way we see sex work, addiction, and mental health. I deal with adolescents we call the Hard To Reach. They are hard to reach because there is often nothing left to reach for. We have talking sessions where disease, the process of dying, stigma, and the failure of public health (where they go to clinics) also gets discussed.
And grief.
Kids with significant grief issues often slide into a deep depression.
But one issue that dominates everything is pain.
Pain associated with HIV remains a medically controversial subject. Most doctors will tell you that HIV does not cause pain. If an HIV positive teenager articulates that they are in pain, the typical reaction is to assume they are lying. Especially if the adolescent is not white. It is an established scientific fact that adolescents of color receive less focus on pain.
“Will I die in pain.”
Probably.