AIDS Treatment Complicated By Patients' Desire For Information
Fri. June 9, 2000 12:00 AM by Brian Decker
Champaign, IL -
A new study finds that for people living with AIDS or HIV, the conventional wisdom about "more information being better than less," doesn't always apply.
While all of these people are coping with a great deal of uncertainty in their lives, some of them may opt for a total "retreat" from gathering and processing information as their course of action, and others may take an "information holiday" in order to put some distance between them and the information. Still others may become information sponges, trying to soak up as much as they can.
Thus, instead of behaving like one monolithic block, these "information seekers may have multiple goals and may choose multiple routes to those goals," said lead researcher Dale Brashers, a professor of speech communication at the University of Illinois.
The fact that people living with HIV and AIDS have different information needs "must be taken into account in developing treatment programs," Brashers said.
Brashers and his research team also have found that uncertainty is not always a negative thing. Some people learn to adjust to chronic uncertainty, some learn to plan in smaller time increments and some learn "to accept uncertainty as a natural rhythm of life."
According to Brashers, uncertainty management may involve: negotiating a desire for information at the same time one is managing anxiety or fear; seeking confirming or disconfirming information; choosing information-rich environments -- such as support groups or AIDS service organizations -- for information seeking; and avoiding these situations if new information might lead to negative or stressful beliefs. These complexities "compel us to more completely examine the nature of communication in uncertainty management."
Some of the people using avoidance strategies reported becoming overwhelmed with the quantity and negativity of the information they were receiving. Others reported retreating from support groups because they could no longer bear to watch the progression of the disease in others. Some felt that information on the Internet was questionable, while others felt that the stress associated with being diagnosed with HIV affected their ability to process information.
On the other hand, there are many people with AIDS and HIV who do seek information, often from multiple sources; such sources include doctors, nurses, others with HIV or the Internet. For these information seekers, "Information used to understand and treat symptoms and to diagnose opportunistic diseases associated with HIV seemed most important to psychological well-being," Brashers said.
The results of the study, which was funded by the National Institute of Nursing Research, appear in the latest issue of Communication Monographs. The research involved 33 people in six focus groups from an AIDS clinical trials unit. Composed primarily of gay men, the groups represented the HIV spectrum from more- to less-advanced disease stages.
While all of these people are coping with a great deal of uncertainty in their lives, some of them may opt for a total "retreat" from gathering and processing information as their course of action, and others may take an "information holiday" in order to put some distance between them and the information. Still others may become information sponges, trying to soak up as much as they can.
Thus, instead of behaving like one monolithic block, these "information seekers may have multiple goals and may choose multiple routes to those goals," said lead researcher Dale Brashers, a professor of speech communication at the University of Illinois.
The fact that people living with HIV and AIDS have different information needs "must be taken into account in developing treatment programs," Brashers said.
Brashers and his research team also have found that uncertainty is not always a negative thing. Some people learn to adjust to chronic uncertainty, some learn to plan in smaller time increments and some learn "to accept uncertainty as a natural rhythm of life."
According to Brashers, uncertainty management may involve: negotiating a desire for information at the same time one is managing anxiety or fear; seeking confirming or disconfirming information; choosing information-rich environments -- such as support groups or AIDS service organizations -- for information seeking; and avoiding these situations if new information might lead to negative or stressful beliefs. These complexities "compel us to more completely examine the nature of communication in uncertainty management."
Some of the people using avoidance strategies reported becoming overwhelmed with the quantity and negativity of the information they were receiving. Others reported retreating from support groups because they could no longer bear to watch the progression of the disease in others. Some felt that information on the Internet was questionable, while others felt that the stress associated with being diagnosed with HIV affected their ability to process information.
On the other hand, there are many people with AIDS and HIV who do seek information, often from multiple sources; such sources include doctors, nurses, others with HIV or the Internet. For these information seekers, "Information used to understand and treat symptoms and to diagnose opportunistic diseases associated with HIV seemed most important to psychological well-being," Brashers said.
The results of the study, which was funded by the National Institute of Nursing Research, appear in the latest issue of Communication Monographs. The research involved 33 people in six focus groups from an AIDS clinical trials unit. Composed primarily of gay men, the groups represented the HIV spectrum from more- to less-advanced disease stages.