CHAMPAIGN, Ill. -- What happens to people who have accepted imminent death, but then learn that they will live? In a new and pioneering study of the psychological impact of revival on people who have HIV and AIDS, researchers find that miracle improvements in health, brought about by highly active combination drug therapies, "also bring new uncertainties that can become unexpected and significant life stressors."
So says Dale Brashers, a professor of speech communication at the University of Illinois who led a team of researchers in the first study of uncertainty caused by physical revival. The findings appear in the current issue of "AIDS Care."
According to Brashers, individuals who are diagnosed with HIV or AIDS often must negotiate any number of life priorities, for example, types of financial support and work status, personal relationships and long-term plans. The renewed prospect of living requires "renegotiating" many of the realities that they had come to accept. This renegotiation is a source of uncertainty, and often stress, affecting their feelings of hope and future orientation (not having any information about the long-term effects of medications and the ambiguity of immune restoration); social roles and identities (concern about how to re-renter life as a person living with a chronic illness, rather than a person dying from a disease); interpersonal relationships (having to deal long-term with people they thought they never would have to deal with again, and feeling guilt for living longer than friends and loved ones); and changes in quality of life (having to cope with impediments to a normal life, which derive from side effects of medications, unforeseen illnesses, living with a chronic disease and the financial drain of taking expensive medications). The comments of one study participant illustrate the situation:
" there's a lot more uncertainty now for me, I think. Because I made my peace a long time ago about the dying issue and now it's 'uh-oh' It's a good 'uh-oh' but at the same time, when you're financially devastated because of the disease, it's a very scary and uncertain 'uh-oh.' "
For the study, which was funded by the National Institutes of Health, data were collected from six groups of people who share what is called the Lazarus Syndrome. In the United States, combination therapy with protease inhibitors and other antiretroviral drugs is the "standard of care." Not all experiences associated with revival were stressful for participants in the study, Brashers said.
Several implications result from the findings, including a few in the realm of education and prevention. According to Brashers, "Some people now believe that the improved treatments means that unsafe sex isn't as big a problem, because if they get infected, they can begin treatment. What they don't realize is that there are significant problems associated with a life on antiretroviral therapy."
Journal
AIDS Care