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Families occur in many different configurations beyond the traditional nuclear family, composed of a husband, wife, and children, and the extended family, which may include grandparents, aunts, uncles, cousins, and others. Changing social conditions and lifestyles have prompted a redefinition of family to include households led by single parents or by grandparents, cohabitating opposite-sex and same-sex couples, and "chosen families" who are biologically and legally unrelated but linked by ties of affection and commitment. All families affected by HIV/AIDS, regardless of their configuration, face multiple serious challenges.

As rates of HIV infection have risen in women of childbearing age, HIV/AIDS has evolved into a disease of families with children. The devastating effects of adult HIV infection are reflected in the increasing numbers of children, adolescents, and young adults who are losing one or both parents to AIDS. It is projected that as many as 125,000 children, adolescents, and young adults in the United States will lose their mothers to AIDS by the year 2000.

The issues associated with progressive HIV infection in a parent are particularly complex as each different stage of HIV illness -- diagnosis, illness progression, late-stage illness, death, and family reconfiguration -- presents a different challenge. Upon diagnosis and often throughout the course of illness, parents must confront issues of disclosure of their HIV status to children, adolescents, and extended family. They also need to plan for the placement of children after parental death. With progression of parental HIV illness, children and teenagers witness the physical and mental deterioration of their parent and are often forced to cope with these changes in the absence of clear information about their parent's health status. In some cases, HIV-associated dementia can impair an adult's capacity to function in a parental role, leaving children without adequate care or forcing older children and adolescents into parental roles.

With parental death, children and adolescents move into reconfigured families, most commonly into extended families also grieving the loss of loved ones. In those cases where children and adolescents move into foster care by non-relatives, they must make the difficult adaptation to a new family system and often different family lifestyles. Furthermore, with parental death, the supports available to the children and the family by virtue of the parent's AIDS diagnosis generally diminish or disappear. Most commonly, children and adolescents orphaned by AIDS are moving from one situation of poverty to another, with their care assumed by already financially limited families.

Complicating family adjustment is the close association of HIV infection in women with drug use. In the United States, injecting drug use has been the risk factor for HIV transmission in 49 percent of women with AIDS. Heterosexual contact with a drug-using male accounts for a significant percentage of the remaining cases. Families affected by parental substance abuse often include a range of other problems that can impair their adaptation to HIV. Thus, children and adolescents often bring histories of abuse, neglect, and exposure to parental drug addiction to the overwhelming stress of parental HIV illness.

For parents with histories of drug or alcohol use, disclosure of HIV status, either to the extended family or to children, is a complex process that brings into direct light the parent's risk behaviors associated with HIV transmission. A parent's feelings of guilt and shame about drug addiction and associated behaviors as well as children's feelings of anger and/or their sense of abandonment can greatly complicate open family communication. Planning for children's future care can be undermined by family dynamics related to a parent's substance abuse, as well as by the stigma that prevents many adults from discussing HIV infection with extended family members, who are potential future caregivers and sources of social support.

"Permanency planning" is the process by which a parent makes arrangements for the placement of his or her children after his or her death. Successful execution of this process requires selection of future caregivers, disclosure of HIV serostatus to these individuals, and efforts to finalize the legal transfer of guardianship. Although there is considerable geographic variation in procedures, two options are generally available for children's placement. Most commonly, extended family members assume the care of orphaned youth either as legal guardians or within the foster care system. Children and adolescents are also placed within the child welfare system in non-relative foster care, group homes, and other arrangements.

The "standby guardianship" law, developed in New York State, allows parents to specify a standby, legal guardian who will assume care of children in the event of parental illness or death without the parent giving up legal rights. This new family law allows parents with episodic AIDS-related illness to maintain some control over the temporary placement of their children and to communicate over time with the caretakers they have selected for their children. Although somewhat hampered in its implementation by bureaucratic complexities, the standby guardian law represents a significant advance in HIV-related family law.

Psychosocial and mental health supports for orphaned children and adolescents are important in facilitating children's adjustment to HIV-related loss. Such supports need to include comprehensive evaluation of children's needs and the capacity to refer children and adolescents for appropriate interventions and/or mental health treatment. Many of the HIV-infected parents who have histories of drug or alcohol use also have heritable psychiatric disorders that may have preceded substance abuse and HIV infection. Thus, the children are at risk for mental health problems that have a genetic basis, including major depression, bipolar disorder, attention-deficit hyperactivity disorder, and learning disabilities. Second, the traumatic life experiences that can be associated with parental drug addiction, such as child neglect, abuse, and foster care placement, can greatly complicate a youngster's adaptation to the stress of HIV illness and death of a parent. A significant proportion of children and adolescents losing parents to AIDS have ongoing mental health needs that are best addressed in clinical settings with multidisciplinary expertise in child and adolescent treatment as well as familiarity with the needs of children of substance abusers and the effects of HIV progression on family life.

Children and adolescents living in families affected by parental HIV and substance abuse are at high risk for their own HIV infection given the potential for exposure to psychosocial stressors and parental risk behaviors. Standard protocols for HIV-risk reduction based on educational and informational models are inadequate to address the particular problems of these children, which include feelings of anger and ambivalence toward parents, identification with parental high-risk behaviors, self-esteem deficits, and feelings of hopelessness.

Finally, although many of the youth orphaned by AIDS will be taken care of by extended family members, some significant percentage will be placed in the foster care system. The need for advocacy for the expansion of an already overburdened child welfare system to meet the needs of a high-risk group of children and adolescents has important policy implications, particularly in this time of fiscal austerity and constriction.

Related Entries:

Adolescents; Babies; Bereavement; Caregiving; Children; Couples; Death and Dying; Disclosure; Ethics, Personal; Family Policy; Maternal Transmission; Social Work; Women

Key Words:

adolescents, babies, children, family, grandparents, orphan, parents, relatives

Further Reading

Davis, B. O., and C. Levine, eds., AIDS and the New Orphans, Westport, Connecticut: Auborn House, 1994

Geballe, S., J. Gruendel, and W. Andiman, eds., Forgotten Children of the AIDS Epidemic, New Haven, Connecticut: Yale University Press, 1995

Havens, J., C. Mellins, S. Ryan, and A. Locker, "Mental Health Needs of Children and Families Affected by HIV/AIDS," in Mental Health Services for HIV Impacted Populations in New York City: A Program Perspective, edited by H. Goodman, G. Landsburg, and A. Spitz-Toth, New York: Coalition of Voluntary Mental Health Agencies, 1998

Levine, C., A Death in the Family, New York: United Hospital Fund, 1993

Michaels, D., and C. Levine, "Estimates of the Number of Motherless Youth Orphaned by AIDS in the United States," Journal of the American Medical Association 268 (1992), pp. 3456-3461

The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic, Raymond A. Smith, Editor. Copyright © 1998, Raymond A. Smith. Carried by permission of Fitzroy Dearborn Publishers.

Encyclopedia of AIDS $25 US/832 pp/Illustrated

For more about this book, or to order, click here.

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It is a part of the publication The Encyclopedia of AIDS.
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