An Intervention for Parents with AIDS and Their Adolescent Children

In the United States, increasing numbers of parents have AIDS, and these individuals will either live with a chronic, life-threatening illness or they will die. Parents with AIDS must cope with physical health symptoms, complex medication regimens, stigma, and fear of AIDS-related death, as well as caring for their family. Parents' ability to care for their family and their illness are likely to influence their children. After living with an ill parent, about 80,000 children in the United States have been orphaned by AIDS (internationally, 13 million). Parental death reduces children's self-esteem and increases depression, anxiety, conduct disturbance, academic difficulty, somatic complaints, and suicidal acts over the long term. To help adolescents and their parents cope with parental AIDS, researchers evaluated the efficacy of an intervention designed to improve behavioral, social and mental health outcomes.

On the basis of the social learning theory, a 24-session intervention was designed to be delivered over 12 Saturdays in small groups. The purpose of the intervention was to help parents with AIDS and their adolescents cope with illness-related tasks. Sessions were organized into two modules, with each module aimed at helping parents and youth cope with different-illness-related challenges. Module 1 (eight sessions over four Saturdays) of the intervention addressed parents' issues of disclosure, emotional reactions to AIDS, and coping with stigma. Module 2 addressed making custody plans, expressing love and affection, and maintaining positive family routines with a very ill parent. This report summarizes the efficacy of the intervention in terms of reducing behavioral, social, and mental health symptoms over two years among adolescents and their parents with AIDS.

From August 1993 to March 1995, all financially needy persons with AIDS who requested services were logged at the Division of AIDS Services in New York City. From this log, 429 eligible parents with AIDS were identified: those who were alive during the recruitment period, were ages 25 to 70 years, had at least 1 adolescent child age 11 to 18 years, were not institutionalized, and had the assent of their clinical social worker that study participation was appropriate. Of the 429 eligible parents with AIDS, 84 percent (n=307) were successfully recruited. Four hundred twelve adolescents were recruited (mean per family=1.5, SD=0.7, range=1-5). Parents and children were randomly assigned to the intensive intervention or to a standard care control condition.

Most of the parents with AIDS were Latino and African-American mothers. The age distribution among parents was large, from 25 to 70 years. About half of the parents had graduated from high school. Household composition varied: 94 percent included children, while in the remaining cases children were temporarily in foster care placements, in group homes, or incarcerated. Twenty-seven percent of households included an adult partner, 11 percent included a grandparent, and 10 percent included other relatives. About half of the adolescents were female. The mean age of the adolescents was 14.8 years (SD=2.1, range=11-18), and 89 percent were enrolled in school.

When families were recruited into this study, the parents anticipated dying in about a year. Most (75 percent) had told their children about their HIV status. The children who knew about their parent's health status were exhibiting more behavior problems than those who did not know. These families faced challenges in regard to the illness, disclosure, custody and saying good-bye. While the intervention substantially improved outcomes among parents with AIDS and their adolescent children, the outcomes for families in the control condition also improved over time, in contrast to existing theories regarding the long-term impact of chronic illness and bereavement. There are at least three reasons for this improvement. First, antiretroviral therapies were introduced about two years into the study. Second, adolescents and parents may have learned to adapt to the illness; over time, conversations about the parent's HIV status decreased. Finally, participation in the study itself may have been a positive intervention for the families, even if they took part only in the standard care condition.

During two years, 44 percent of the parents with AIDS died. Deaths were distributed throughout the follow-up period, and rates were similar across intervention conditions. After the parent's death, a third intervention module was delivered to the bereaved adolescents and their caregivers. The results of that module are being evaluated.

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