Information Center Bulletin
Volume 1, No. 1 Winter 1996-97

HIV/AIDS: Initial Findings from the Field

Just as multi-drug treatment for HIV/AIDS appears to increase the number of years people infected with the virus remain symptom-free, offering an array of mental health services can improve the quality of their lives. Early findings from the 2-year-old HIV/AIDS Mental Health Services Demonstration Program, a joint effort of three Federal agencies, are shedding new light on how to advance services and systems of care.

Preliminary findings from the 11 sites supported by the program--each of which serves a demographically diverse population--indicate:

• Early intervention with mental health services seems to improve adherence to medical and other treatments;
• Many parents infected with HIV need counseling to help them prepare their children for the loss of one--or both--parents;
• Mental health treatment services and HIV education play an important role in preventing these high-risk children and adolescents whose parents have HIV or AIDS from acquiring the virus themselves;
• People affected by HIV who also have substance abuse disorders are more likely to seek primary health care and HIV treatment if they receive psychosocial rehabilitation services than those who do not receive mental health services;
• Developing linkages with existing community AIDS service organizations is critical to reaching the diverse range of people affected by HIV/AIDS; and
• Home-based services are essential for individuals with end-stage disease.

While the focus of services primarily is on the person infected by HIV, family members and partners are affected and need support, too.

"The extent of needed services goes far beyond bereavement counseling," says Elaine Corrigan, HIV/AIDS Program Director at the Center for Mental Health Services (CMHS). "Families need to learn coping skills, they need respite care, and, when children are involved, they need assistance with planning for the children's future."

However, many parents with HIV/AIDS don't even tell anyone they are sick until it's apparent they are ill. Stigma isn't the only reason, Corrigan says.

"These parents are afraid the foster care system will take away the kids--and that's often the case. Parents rarely have a say in who will become their children's guardian. And what's worse, the court-appointed guardians usually are total strangers."

As a result of the new knowledge being generated by the sites supported through the program, some States are beginning to recognize the importance of working with HIV-infected parents to plan for the children's future. "The New Jersey project is working with parents and the foster care system so parents can begin to trust the system and to help the parents identify a new guardian," says Corrigan. In fact, the findings from the CMHS HIV/AIDS project in New Jersey are helping to change that State's laws.

As the projects' observations are formalized into reports, the Information Center will help quickly disseminate the information through its Web site and electronic bulletin board system (BBS). "In addition, we're planning to develop various manuals," Corrigan says, "such as a 'how-to' manual for project directors and one on case management that's appropriate for HIV mental health services that also will be available through the Information Center."

In addition, the Information Center serves as an entry point for a range of Web sites with information on HIV/AIDS, such as the Federal Centers for Disease Control and Prevention site at http://www.cdcnpin.org/

The CMHS HIV/AIDS Mental Health Services Demonstration Program is a joint effort of three Federal agencies: the Substance Abuse and Mental Health Services Administration, the Health Resources and Services Administration, and the National Institutes of Health.

For more information, contact Elaine Corrigan at 301-443-7817.

Information Center Bulletin
Volume 1, No. 1