Improving the quality of life for youngsters with HIV - Baltimore City Head Start program

Children Today, May-June, 1990 by Linda S. Crites, Clare Siegel

Impriving the Quality of Life for Youngsters with HIV

While the public is probably most acutely aware of the medical outcome of HIV (human immunodeficiency virus) infection and AIDS (acquired immune deficiency syndrome), the psychosocial consequences of HIV infection have far-reaching effects on children infected with the virus and their families. Many of these children are from disadvantaged family situations, where existing employment, housing and financial problems may be compounded by a substance abuse problem in one or more members. From the outset, these families are likely to have diminished resources for coping with HIV illness and its associated problems.

Currently in Baltimore, Maryland, where the Baltimore City Head Start program serves 47 children with HIV infection and their families, more than 300 children have been identified as HIV at-risk or infected. Approximately 100 of these children have active HIV disease processes, and another 150 of these children are in an indeterminate category, being infants under age two born to HIV positive mothers. (1) It is estimated that about a third of these children will be HIV infected. (2) By the time they are a year old, most of these infants will manifest some symptoms of HIV infection and approximately half will develop AIDS.

HIV testing is usually performed only when other factors indicate the possibility that the child way have HIV. In some cases, a health clinic may identify the child's mother as being in a known high-risk category, that is, an intravenous drug user or a sexual partner of one. Also, since HIV infected women are more vulnerable to becoming ill around the time of the child's birth or shortly thereafter, the mother's HIV status may be discovered at that time. More often, however, the child is identified when he or she becomes symptomatic. Investigation of the child's illness may lead to testing of the child and parents. Of course, the diagnosis of HIV in one child in a family suggests that siblings may be infected.

The most common test for HIV detects antibodies produced by the body in response to infection by the virus. This test is problematic in children. Because babies have their mother's antibodies until about 15 months of age, they may test positive--that is, appear to have the virus when they do not. Consequently, these children are followed for repeat testing, usually until age two, to determine whether or not they are actually infected.

While children may not have any symptoms or observable signs of the infection for a period of time, initial symptoms can include low brithweight, failure to thrive, swollen and enlarged lymph nodes, and enlargement or abnormalities of the liver and spleen. (3) HIV infected children are especially susceptible to colds and common childhood diseases because their immune systems are suppressed; furthermore, when they get childhood infections they can become much sicker than a child who is not HIV infected. Symptoms of more advanced stages of the illness include chronic diarrhea and recurrent bacterial or viral infections, such as ear infections, meningitis and pneumonia. Kaposi's sarcoma may occur in advanced stages of the illness.

Developmental delays and regressions are also associated with advanced HIV disease in children and may show up in cognitive and intellectual areas as well as in motor function. It is still unclear whether these developmental problems are solely a result of the virus itself, or if such factors as family problems and social isolation are significant contributors.

Psychosocial Problems

While research and literature on pediatric AIDS, particularly on psychosocial aspects of the illness, are still too scarce, there is growing awareness of the multitude of problems these families face. Medical resources are often distributed unevenly throughout geographic areas, and may be difficult to access by poorer families who must rely on public transportation. Lack of coordination between health care services for mothers and children also exacerbates the family's stress by necessitating multiple visits to the medical facility within a shorter time frame. With increased frequency of medical care, transportation costs can quickly mount and heighten the financial strains on these families. Prescription medication, special diets, or even something as predictable as the need for more disposable diapers because a child has chronic diarrhea can further add to financial costs.

The still prevalent stigma associated with AIDS in our society makes it difficult for families to request and obtain the help and emotional support of friends and relatives. More than one mother has shared with us the story of her experience of being banned from her family's home when her HIV status became known. Because they fear discrimination and rejection, many families with an HIV infected member are extremely reluctant to share this information, even with professionals who are helping them obtain services. While legislative and community education efforts have helped reduce some of the resistance of medical, social and educational facilities working with HIV affected individuals, negative attitudes persist, and families are still sometimes subjected to harsh judgements from providers.