| Learning Objective #1: Understand the meaning of a dramatic change in survival expectations for people living with HIV disease | |||
| Learning Objective #2: Contemplate the human experiential implications of a selected development in techno-medicine and the uncertain rescues technology offers |
Objective: To understand the meaning of an unexpected and dramatic change in survival expectations for individuals who had felt they were dying from HIV/AIDS (Human Immunodeficiency Virus Disease) only to be “rescued” by improved treatment options.
Design: A descriptive comparative design was implemented through hermeneutic phenomenology.
Population, Sample, Setting: Individuals with advanced HIV disease participated in the study (10 from the midwestern United States and 8 from urban New South Wales,Australia). They were recruited through HIV clinics and support organizations for people with HIV/AIDS in the United States and from an HIV clinic in New South Wales.
Methods: Investigators engaged in phenomenological dialogue with each participant,focusing on their experience with advancing HIV disease and its reversal after beginning more aggressive therapy. Participants were invited to share their experience and to explore its meanings. The dialogues were audiotaped and transcribed. Each transcribed narrative was read in its entirety in search for individual patterns, then coded for themes by each investigator. The comparative and iterative analysis of themes contributed to the identification of the overall pattern.
Findings: The overarching experiential pattern was one of undying. Seven primary themes elaborate on this pattern: waiting for a death that didn’t come, guilt for surviving and thriving, inability to ‘reclaim my life’, making the transition–clarifying connections, getting on with living, mistrust of health care, and ‘uncertainty reigns.’
Conclusions: Individual and collective human experiences reflect a dramatic shift in world view from dying to tenuous living, confronting us with the paradox of rapid developments in techno-medicine and the double-edged nature of the uncertain rescues technology offers.
Implications: Findings of this research have implications for the care of people with life-limiting conditions, including HIV/AIDS. Implications for practice and further research will be discussed.
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