Living with chronic hepatitis C means 'you just haven't got a normal life any more'

To explore psychosocial factors that impact on quality of life for people living with self-reported chronic hepatitis C.

A purposeful sample of 70 people who were self-identified as being hepatitis C virus (HCV)-positive was recruited through a variety of institutions and community agencies. Semi-structured interviews were held with 12 groups and 21 individuals. A qualitative grounded-theory methodology was used for data collection and analysis. Experiences of physical and psychological symptoms, stigma and discrimination, and living with an infectious disease, were explored using matrices.

Phenomena emerging from the data included previously undocumented illness 'attacks' that were associated with depressive symptoms and a perception of hepatitis C as fatal. Uncertainty related to disease progression and transmission of the virus were common experiences among participants. A universal experience was fear and anxiety about stigma and discrimination.

The findings of this study indicate that chronic hepatitis C has a pervasive impact on quality of life with a complexity that has not been explored with quantitative research approaches. Primary healthcare professionals need to be alert to the psychological and social impacts of chronic hepatitis C and to avoid behaviours that lead to perceptions of stigma and discrimination. The research indicates a need for further investigation into the relationship between psychosocial factors, disease management and disease progression.