Communication is a means of managing uncertainty. In a state of uncertainty: (a) information seeking can reduce uncertainty by allowing for better discrimination between or among alternatives; (b) information seeking can increase uncertainty by increasing the number of alternatives, or by blurring the distinction between or among alternatives; and (c) information avoidance can maintain uncertainty. Individuals living with HIV or AIDS, like many other chronically-ill or terminally-ill individuals, must manage high levels of uncertainty about their illness. Participants in a focus group study of persons with HIV or AIDS reported effective uncertainty management, including managing uncertainty that was challenging, managing uncertainty that was essential for maintaining hope, learning to live with chronic uncertainty, and managing information problems. New information can serve uncertainty management even if it fails to reduce the number or ambiguity of alternatives, because new information can invite a reappraisal of uncertainty. A theory of uncertainty management based on these findings is offered.

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Uncertainty is an important part of the illness experience. Mishel elaborated a theory of uncertainty in acute illness and later expanded the framework to account for uncertainty in chronic illness. Researchers subsequently have investigated the causes and outcomes associated with the uncertainty in illness experience across a variety of medical conditions. The current study applies and extends Mishel's model within the context of HIV illness-related uncertainty. In this qualitative study, focus group methods were used to examine the nature of illness uncertainty experienced by persons living with HIV or AIDS. Findings confirm Mishel's contention that the causes of uncertainty extend beyond those of medical diagnosis, treatment, and recovery to personal and social aspects of daily life. Identified sources of uncertainty may have important mental health and quality of life implications.

Despite the fact that many individuals express a desire for more information and involvement in the health care process, it remains to be seen if they have adopted a more participative approach by becoming involved in decisions made about their health. Research indicates that, in actual practice, individuals are differentially willing or able to be active patients. AIDS patient activists are 1 group of individuals who have become more involved in their health care decision making. This study tests the reliability and validity of a measure of patient activism-the Patient Self-Advocacy Scale (PSAS)--designed to assess the dimensions of (a) increased illness and treatment education, (b) increased assertiveness in health care interactions, and (c) increased potential for nonadherence. Tests administered to 2 samples of participants (174 adults from an HIV-AIDS population and 21 8 adults from a general population) demonstrated that the PSAS was a reliable and valid measure of patient involvement in health care decision making.

This study reports the revival experiences of persons who once were reconciled to their death from HIV/AIDS but who, as a result of dramatic treatment responses, now believe they may survive (popularly known as the Lazarus Syndrome). A purposive sample of men and women living with HIV infection or AIDS were interviewed in six focus groups. As part of a larger study of uncertainty in HIV illness, participants described their uncertainty accompanying renewed health and a return to the joys and problems of continued life. While new discoveries about the disease and exciting antiretroviral therapies hold the promise of improved survival, ambiguity about the durability of treatment response and ultimate survival contribute to the level of uncertainty with which a patient must cope. The experience of uncertainty in the narratives about revival involved renegotiation. Participants described physical renewal as an unexpected new stressor forcing them to renegotiate: (a) feelings of hope and future orientation, (b) social roles and identities, (c) interpersonal relations, and (d) the quality of their lives. Implications for prevention, practice, research and theory are presented and suggestions for education and assistance are offered.