Coping programs for adolescent children of HIV-infected parents help teens develop into productive young adults

UCLA AIDS Institute scientists have found that coping programs for adolescent children of HIV-infected parents help teens develop into productive young adults while saving taxpayers significant expenses in government services.

Published Aug. 2 in the Archives of Pediatrics and Adolescent Medicine, the UCLA findings suggest a model for assisting children of parents living with a chronic or terminal disease.

"By buffering teenagers when their parents are ill or dying, we help teens function better as young adults," said Mary Jane Rotheram-Borus, professor of psychiatry and biobehavioral sciences at UCLA's David Geffen School of Medicine and a member of the UCLA AIDS Institute and Neuropsychiatric Institute. "The children in our study were less likely to drop out of school, have babies as teens, or require welfare or unemployment payments. This translates into direct savings for every taxpayer."

Collaborating with the New York City Division of AIDS Services, the UCLA team recruited 300 HIV-infected adults and obtained their permission to provide a risk-prevention program to their 400 adolescent children. Half of the families were randomly assigned to the coping skills program and the other half to a control group that provided broader support services.

Unlike previous studies, which were smaller and examined the effect of one parent's death in primarily white, two-parent families, UCLA's study was dominated by single-parent African American and Latino families. Parents' ages ranged from 25 to 70, and half had graduated from high school.

The prevention program focused on the building of cognitive and behavioral skills to help teens cope with their parent's illness. Each of the three parts addressed specific tasks, such as coping with negative emotions, planning for the future and reducing risky behavior related to sexual activity and drug use.

Teens attended the third part only if their parent died, which occurred in half the cases. After their parent's death, the children moved in with relatives and continued attending the program with their new caregivers.

"We helped parents decide how to tell their children about their illness and how to make custody plans," Rotheram-Borus said. "We worked on maintaining positive family routines, such as arranging childcare and making dinner. We also helped the children say goodbye to their parents and overcome their own feelings of guilt and anger."

The UCLA team presented the program to the teens in small groups and then tracked the teens' adjustment every three months for the first two years of the study. Follow-up interviews continued every six months for the next four years, with annual evaluations for most participants.

The six-year results proved significant. When compared to youth in the control group:

• 15 percent more of the youth in the intervention group were employed or in school.
• Youth in the intervention group were 12 percent less likely to become teenage parents.
• 11 percent fewer youth in the intervention group received public welfare.
• 11 percent fewer youth in the intervention group drank any alcohol in the past month; they were 50 percent less likely to drink five or more alcoholic beverages in one day.
• Youth in the intervention group suffered .07 percent fewer psychosomatic symptoms.
• Overall, youth in the intervention group reported significantly less conflict with their romantic partners. They also expressed higher expectations for meeting a partner with a good job and marrying before having children.

"Very few prevention studies can demonstrate six-year results," Rotheram-Borus said. "Our study is unique because it's the first long-term study of bereavement in a large population of ethnically diverse families in the past 25 years."

The UCLA group currently is leading the same project in Los Angeles in collaboration with the AIDS Healthcare Foundation, Harbor-UCLA Medical Center and County/USC Medical Center. Funded by the National Institute of Mental Health, the project is in the first of its five years. Some 400 HIV-positive mothers and 640 teenage children will be recruited to participate from three sites in Los Angeles.

In the United States, some 125,000 children have lost one or both parents to HIV, with about 15,000 parents dying each year. As drug therapies extend infected people's life spans, at least 750,000 children are living with an HIV-positive parent.

"Teenage children of parents with chronic or terminal illness often assume responsibility for running the household, caring for younger siblings and providing emotional support for their parents at the expense of their own needs," Rotheram-Borus said. "Addressing these families' psychosocial issues results in long-term benefits that save society a great deal."

The National Institute of Mental Health supported the study. Rotheram-Borus' co-authors included Dr. Patricia Lester and Ying-Ying Lin of UCLA, and Martha Lee, now with Temple University.