Invisible Caregivers: Older Adults Raising Children in the Wake of HIV/AIDS

Invisible Caregivers: Older Adults Raising Children in the Wake of HIV/AIDS

Invisible Caregivers: Older Adults Raising Children in the Wake of HIV/AIDS

Invisible Caregivers: Older Adults Raising Children in the Wake of HIV/AIDS

Synopsis

An understudied aspect of the HIV/AIDS epidemic is the creation of hundreds of thousands of grandparent-headed households that have become home to children bereft of one or both of their parents. Such "skip-generation parenting" presents a host of challenges to the families involved and the social programs designed to assist them. Despite this unprecedented caregiving responsibility, older surrogate parents remain relatively invisible, hidden in the shadows of HIV care and the demands of raising a child. The primary goal of Invisible Caregivers is to generate, support, and guide program and policy initiatives designed to meet the needs of elder surrogates and their families. Most social service programs are not able to identify the needs of older surrogates, often because these surrogate parents in HIV-infected families are reluctant to make their needs known for fear of social stigma or possible reductions of benefits. Multiple systemic barriers to case management and other services also frustrate attempts to bring available resources to elder caregivers. These barriers include professional ignorance or denial that HIV affects surrogates, eligibility restrictions through CARE, limited funding and age restriction on OAA, and a fragmented health and human service system. Because the issues facing elder caregivers are many and varied, this collection covers a host of issues: community health, aging, HIV services, child welfare, education, public policy, and mental health.

Excerpt

The last two decades of the twentieth century witnessed unprecedented numbers of children eighteen years and younger in the United States residing in homes headed by a grandparent. Of the nearly four million children living in grandparent-headed households in 1997, 1.5 million had neither parent present (Lugaila 1998). “Skip-generation parenting” includes thousands of grandparents and older relatives such as great-grandparents and great-aunts who are raising children and adolescents because HIV disease has killed or disabled the parents. Where custodial responsibility has been documented, grandmothers are most often the surrogate parents to children of HIV-infected parents (Schuster et al. 2000; Draimin 1995; Schable et al. 1995; Cohen and Nehring 1994). The AIDS epidemic in the United States was projected to have orphaned more than 150,000 children by the year 2000 (Michaels and Levine 1992), leaving as many as 40,000 older adults as surrogate parents. Thousands more are now caring for children whose parents are infected but living with HIV disease. By 2010, hundreds of thousands of grandparents and other family elders will be raising children in the wake of HIV/AIDS around the globe. Despite this unprecedented caregiving responsibility, the older adults themselves are relatively invisible, hidden in the shadows of HIV care and the demands of raising a child.

Although surrogate parents in the HIV epidemic face problems shared with those raising children of incarcerated or drug-addicted mothers, HIV disease poses unique problems for both child and caregiver. To which friends and family members can a grandmother disclose the reason for her daughter's death? Should she also tell them of her four-year-old grandson's seropositive . . .

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