Persons with AIDS and their family caregivers: Negotiating the journey

Increased incidence of AIDS in North America and throughout the world has posed a challenge to nursing to provide care for these clients and their families. In this study a theoretical model was derived to explain how family members manage the experience of living with AIDS. Interviews with 11 family members and 9 persons with AIDS (PWAs) were submitted to the grounded theory method of constant comparative analysis. Negotiating the Journey was found to be the basic social psychological process that conceptually related and explained the variability in the experiences of participants. Strategies within the negotiating process included Control of Awareness, Gearing Up, Finding a Guide, Gauging the Territory, Living with AIDS, Working the System, Framing Time, and Making Tradeoffs. PWAs and their families learned and gained competencies in the negotiation of their journeys. They then used their wisdom to help others by Becoming Guides.