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Hope, despair and hopelessness in living with HIV/AIDS: a grounded theory study


Jari Kylmä, Department of Nursing Science, University of Kuopio, PO Box 1627, 70211 Kuopio, Finland. E-mail:


Hope, despair and hopelessness in living with HIV/AIDS: a grounded theory study

Background. Hope, despair or hopelessness have been detected in several research reports as important elements of the lives of persons living with human immunodeficiency virus (HIV) (PLWH) or acquired immunodeficiency syndrome (AIDS) (PLWA). However, there is an obvious gap in the literature suggesting a need to study the overall dynamics of hope (including both hope and despair or hopelessness) along the HIV spectrum from PLWHs’ and PLWAs’ perspective.

Aim. The purpose of this study was to describe the dynamics of hope in living with HIV/AIDS.

Methods. The data were collected through interviewing 10 PLWHs/PLWAs and analysed using a grounded theory method.

Findings. The dynamics of hope is a multifaceted and complex combination of ‘hope’, ‘despair’ and ‘hopelessness’. It comprises balancing between ‘believing life to be worth living at the present and in the future’, ‘losing one’s grip and sinking into narrowing existence vs. fighting against sinking’ and ‘giving up in the face of belief in nonexisting future’. A dynamic alternation between hope, despair and hopelessness takes place in the presence of factors that contribute to the ‘folding’ and ‘unfolding’ possibilities in everyday life. Factors contributing to the folding possibilities include ‘losing’, ‘fear’, ‘uncertainty’, ‘problems in care’, ‘HIV/AIDS in close ones’, ‘difficulties in relationships’ and ‘negative public images and attitudes concerning HIV’. Factors contributing to the unfolding possibilities are ‘constructive life experiences’, ‘wishing not to have HIV while uncertain’, ‘constructive relationships’, ‘ability to control one’s life’, ‘finding the meaning of life and zest for life’, ‘caring’, ‘noticing one’s improved health and the continuance of life’, ‘increasingly positive attitudes concerning HIV-positive people’ and ‘protection by law’.

Conclusions. The dynamics of hope discovered in this study present new conceptualization, where hope, despair and hopelessness are viewed in relation to each other. The emerged definitions may be used in clinical practice to identify these phenomena in individuals with HIV/AIDS. The discovered factors contributing to the folding and unfolding possibilities can be used in clinical practice to help the individuals along the dynamics of hope.