The Nature of Hope Among Men and Women Living with HIV-AIDS

The goal of this qualitative study was to discover how individuals living with the human immunodeficiency virus (HIV) experience hope. Still considered a life-threatening illness, the acquired immune deficiency syndrome (AIDS) continues to challenge those who are affected by it. In an attempt to enhance understanding of the nature and role of hope in HIV-related illness, repeated in-depth conversational interviews were conducted over 24 months in naturalistic settings.

Participants in this longitudinal study originally included 5 women and 30 men; 15 deaths have occurred since the onset of the study. Of the 28 participants who completed the study, all but 7 were diagnosed with AIDS. Many lived with a positive HIV status for 8 years or more. Ages of the participants ranged from 22 to 60 years; the average age for men and women was 34.7 years.

Individuals were invited to respond to the questions, "Please tell me what it has been like for you living with HIV or AIDS," and "Can you tell me about some times when you have been aware of hope?" Twelve themes of the experience of hope were determined through the process of phenomenological analysis of personal narratives. The following portrait of the nature of hope emerged from the discovery process: Hope is the belief in possibilities; it is believing in the possibility of living a meaningful, purposeful life; of having physical comfort; and belonging and connecting with others. Hope is the belief in the possibility of managing the illness, holding on to one's independence, living a "normal" life with humor and love, and doing good deeds. It is the belief in the possibility of acceptance, living with HIV-AIDS, dying with some life left, and being at peace.

An unexpected finding of this study was the lasting quality of hope over time, regardless of illness progression or severity of symptoms. This finding suggests that fatalistic perceptions of an HIV or AIDS diagnosis are not shared by those who live with the virus and that a context for hope should be considered an important aspect of caring for HIV-affected individuals. Thematic descriptions of the experience of hope were discussed in relation to social support, stigma and stereotypes, and Erikson's stage theory of psychosocial development. A notable finding was the participants' complaint of "becoming old." Fatigue and pain were the physical symptoms cited most frequently by both men and women as being difficult to live with. The notion of hopeful dying was relevant to many participants. A hope model for HIV-AIDS caregivers is discussed.