Explanatory Models and Illness Experience of People Living with HIV

Research into explanatory models of disease and illness typically explores people’s conceptual understanding, and emphasizes differences between patient and provider models. However, the explanatory models framework of etiology, time and mode of onset of symptoms, pathophysiology, course of sickness, and treatment is built on categories characteristic of biomedical understanding. It is unclear how well these map onto people’s lived experience of illness, and to the extent they do, how they translate. Scholars have previously studied the experience of people living with HIV through the lenses of stigma and identity theory. Here, through in-depth qualitative interviews with 32 people living with HIV in the northeast United States, we explored the experience and meanings of living with HIV more broadly using the explanatory models framework. We found that identity reformation is a major challenge for most people following the HIV diagnosis, and can be understood as a central component of the concept of course of illness. Salient etiological explanations are not biological, but rather social, such as betrayal, or living in a specific cultural milieu, and often self-evaluative. Given that symptoms can now largely be avoided through adherence to treatment, they are most frequently described in terms of observation of others who have not been adherent, or the resolution of symptoms following treatment. The category of pathophysiology is not ordinarily very relevant to the illness experience, as few respondents have any understanding of the mechanism of pathogenesis in HIV, nor much interest in it. Treatment has various personal meanings, both positive and negative, often profound. For people to engage successfully in treatment and live successfully with HIV, mechanistic explanation is of little significance. Rather, positive psychological integration of health promoting behaviors is of central importance.