Most people living with HIV/AIDS have lost a family member, friend, or associate to HIV disease (Sikkema et al, 2000). Coping with a loss as a result of HIV/AIDS may differ from coping with losses to other diseases in several ways (Sikkema, Kochman, DiFranceisco, Kelley, & Hoffman, 2003). First, many people who die from complications of HIV disease die at a relatively young age (Kain, 2004). Although survivors may have anticipated an HIV-positive person's death, they still find it difficult to reconcile the fact that the life of a young person was cut short (Walker, 1991). In addition, the stigma associated with HIV may prevent those who survive from freely mourning or acknowledging the cause of a friend or loved one's death (Mallinson, 1997). Moreover, in the United States, HIV has been highly concentrated within specific populations, including gay men and injection drug users (CDC, 2001). People in these communities have lost many more friends and loved ones to HIV/AIDS than people in less affected communities, and have watched their social networks dwindle (Sikkema et al, 2003). "Survivor's guilt" may also prevent those who have lost loved ones from fully grieving and recovering (Kain, 2004). Particularly in the gay community, survivors may feel guilty about being HIV-negative in light of the suffering of their peers (Boykin, 1991; Schwartzberg, 1992).
During the 1985 annual march in memory of assassinated gay San Francisco Supervisor Harvey Milk and Mayor George Moscone, gay activist Cleve Jones asked marchers to write the names of loved ones who had died of AIDS on placards. These were later taped to the walls of the San Francisco Federal Building. To Jones, the wall of names looked like a quilt, inspiring him to later make the first quilt panel in honor of a friend who had died of AIDS. Jones later formed the NAMES Project Foundation with friends.
"Founded in 1987, the AIDS Memorial Quilt is a poignant memorial, a powerful tool for use in preventing new HIV infections, and it's the largest ongoing community arts project in the world...Virtually every one of the more than 40,000 colorful panels that make up the Quilt memorializes the life of a person lost to AIDS" (NAMES Project Foundation, 2006a).
The quilt has been displayed in its entirety only five times—in 1987, 1988, 1989, 1992, and 1996—each time on the National Mall in Washington, DC. The last display of the entire quilt (October 1996) covered the entire expanse of the National Mall, from the Capitol to the Washington Monument. Portions of the quilt continue to be displayed around the country. The quilt was nominated for a Nobel Peace Prize in 1989.
AIDS Memorial Quilt facts, as of June 2006 (NAMES Project Foundation, 2006c).
The NAMES Project Foundation also manages the AIDS Memorial Quilt Archive project, which preserves the "powerful images and stories contained within The Quilt while expanding our AIDS awareness and HIV prevention education efforts" by offering a searchable database of digitized photographs and accompanying documentary materials (such as letters and biographies) on all Quilt panels (NAMES Project Foundation, 1996d).
Hospice care comprises programs for people who are dying and their caregivers. A number of AIDS-related organizations focus on providing compassionate hospice care to patients with AIDS and their loved ones.
One hospice-based organization based in San Francisco, California is called Maitri. Maitri (pronounced "MY-tree") is a Sanskrit word that means "compassionate friendship." This nonprofit organization provides residents with HIV and their loved ones with comprehensive support in a peaceful home-like environment. In addition to providing nursing and personal care, the staff draws on emotional and spiritual resources to help meet the special needs of their residents. Maitri focuses especially on those who might otherwise be without access to needed resources and care.
Maitri also provides both residents and those who love them with time and space to process their grief in the final days of a resident’s life, as well as during the first few days after the resident’s death. Parents, spouses, partners, siblings, and friends can use these days as a time for highly personalized goodbye rituals, prayers, meditations, and the like. A remembrance book stands on a small table in Maitri’s entryway, its pages filled with the words of those who have said goodbye to someone who died of AIDS.
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