The "hidden patient": older relatives raising children orphaned by AIDS

Abstract

In the United States today, thousands of grandmothers and other third- and fourth-generation relatives are raising children and adolescents whose primary parent, usually the mothers, has died from acquired immune deficiency syndrome (AIDS) or is too ill to serve as the primary parent. More than 100,000 children below the age of 18 are expected to lose their mothers to AIDS by the year 2000, most in poor communities. Isolated by the demands of caregiving, child care, and the stigma of AIDS on even uninfected family members, this group of older surrogate parents is at risk not only for chronic conditions and stress-related somatic complaints, but for neglected health. Using the gerontological concept of the "hidden patient," this article presents four cases drawn from an exploratory study of the physical and emotional health risks and health behaviors of older adults raising children orphaned by AIDS. External and internal barriers to self-care are described, including lack of child and respite care and health insurance, caregiver depression, and denial of health problems.