But a new university study suggests that there is at least one glimmer of hope.
In a recent article in the Journal of Social and Personal Relationships, researchers report that social activism in groups such as ACT UP may have a positive effect on the way people with AIDS and HIV cope with their medical and psychological problems.
The research team found that in comparison with nonactivists, activist group members used more problem-focused coping and less emotion-focused coping; had greater knowledge of HIV-treatment information sources; and had greater integration into networks of people living with HIV or AIDS.
"Many individuals living with HIV or AIDS have engaged in social activism and advocating for their health-care needs," said Dale Brashers, the lead author and a professor of speech communication at the University of Illinois at Urbana-Champaign. "They have had a major impact on the
health-care system, such as changes in how prescription drugs are tested and approved. Now it appears that their behaviors also are reflected in more active engagement with their health-care providers and more fully developed support networks of other people living with the disease. There appear to be advantages to a more active orientation toward health care."
The study, involving a survey of 174 people, mostly gay white males, is the first of its kind and "an important step toward developing theories about the impact of activist group membership on individual members," Brashers said.
Although collective action has been a significant part of the political and cultural contexts of people living with HIV or AIDS, "little is known about the individual characteristics and behavioral patterns of those who engage in social activism," he said. Other findings:
- Asked to name sources of information about AIDS or HIV, activists were more likely to list nontraditional sources -- Internet sites and pharmaceutical companies -- whereas nonactivists were more likely to list traditional sources -- health-care providers and the media.
- Activist group members had higher levels of education and had known about their AIDS or HIV-positive status longer than had nonactivists (72.1 months versus 53.7 months).
- Activist members were more likely to receive services and volunteer at AIDS service organizations.
There is much left to do in this new area of research, including work that explores "the ways in which these variables are connected to health outcomes," Brashers said.
Brashers is completing a study that focuses on the connection between activism and improved physical and mental health. Currently testing a skills-training program, he will be looking at the data within the next few months.