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

Abstract

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