Breaking Down Uncertainty
Communication skills help HIV patients cope with illness.
When someone is diagnosed with a life–threatening illness, the uncertainty of the prognosis may be nearly as disruptive to the patient's life as the illness itself.
Dale Brashers has seen the effects firsthand. For more than a decade, this LAS professor of speech communication has tracked the effects of uncertainty on HIV patients. He defines uncertainty as "the perception people have that they lack sufficient knowledge."
The concept of uncertainty becomes an issue when patients don't think they have enough information to make treatment decisions. For example, if someone has a headache but doesn't know what having that symptom means, it can create uncertainty.
Uncertainty has caused some HIV patients to abandon their treatments or not take their medication as prescribed, which may allow the virus to become resistant to treatment. Others experience anxiety or depression, which can impair the immune system. With HIV, such behaviors can be life–threatening, Brashers says.
"It really is a health issue," says Brashers. "It's not just a psychological issue about uncertainty, it really does affect ultimately health care decisions as well as physical health—and the connections between physical and mental health are very clear."
Based on research funded by the National Institute of Health, Brashers has developed a pilot intervention program for newly diagnosed HIV patients. His approach goes beyond standard intervention programs, which assume that information alone empowers patients to cope. Brashers' program teaches the severely ill how to discuss their condition with friends, family, and their doctors.
"I'm learning how to live, learning how to take care of myself," wrote one participant in an exit survey upon the intervention's completion. "I've learned how to not be hesitant about something. When something is wrong, get on the phone and call the doctors... I'm learning that because I want to live. I keep stressing that, I want to live a long time and since I've been here…since I've been here, I don't know where I'd be if I hadn't been here."
The results of the study, published this spring, are promising. Of the 100 people who participated in the two–year study, a statistically significant number had less depression, experienced less uncertainty, had greater satisfaction with social support, and utilized information sources more than did a control group. Brashers also collected data on various health, quality of life, and communication skills measures.
Each patient worked one–on–one with a peer educator, meeting once a week for a month. Each week, the peer educator presented two new "lessons." The topics included how to talk to your doctor; how to disclose the illness to family and friends; how to use the Internet and the library as information resources; basic HIV 101; and long–term survival. The program was based in Columbus, Ohio, a city that has a sizable HIV–positive population and where Brashers previously had taught at Ohio State University.
"We're hoping that this will be translatable into clinical practice and that we'll be able to provide materials and ideas for people who want to include this in their own clinical setting," Brashers says.
Brashers believes that the theory behind the program may not be limited to HIV patients.
"I think the idea of using communications skills training to help people manage their uncertainty is something that could translate across illnesses," he says.
By Laura Weisskopf Bleill