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Bonus time: A gay man's experience as a long-term HIV survivor.

Death studies·2020

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Setup and Execution of the Rapid Cycle Deliberate Practice Death Notification Curriculum
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Opening Life's Gifts: Facing Death for a Second Time.

Judith L Hold, Barbara J Blake, Michelle Byrne

    The Journal of the Association of Nurses in AIDS Care : JANAC
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    Long-term survivors of HIV are facing end-of-life concerns again. This study explored their experiences, finding transformed fear and a new understanding of death as a natural life process.

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    Area of Science:

    • Medical Sociology
    • Psychology
    • Public Health

    Background:

    • Effective antiretroviral therapy has transformed HIV from a terminal illness into a chronic condition.
    • Long-term survivors of HIV are now aging and confronting mortality due to co-occurring chronic diseases.

    Purpose of the Study:

    • To explore the lived experiences of adults living with HIV for over 20 years as they confront end-of-life issues for a second time.
    • To understand the psychological and existential challenges faced by aging HIV survivors.

    Main Methods:

    • Hermeneutic phenomenology research design.
    • In-depth, audiotaped, and transcribed life-story interviews with long-term HIV survivors.
    • Thematic analysis of participant narratives conducted concurrently with data collection.

    Main Results:

    • Three overarching themes emerged: Making Choices, Transformation of Fear, and Meaning of Death.
    • Participant decision-making was influenced by both positive and negative life pathways.
    • Fear of dying evolved over time, with participants redirecting energy toward living and accepting death as a natural part of life.

    Conclusions:

    • Aging individuals with long-term HIV diagnoses are navigating complex end-of-life experiences.
    • The study highlights the psychological resilience and evolving perspectives on mortality among this population.
    • Understanding these experiences is crucial for providing appropriate palliative and end-of-life care for long-term HIV survivors.