Experiences Of Uncertainty And Stress Following Fibrosis Assesment In People Who Inject Drugs Living With Hepatitis C, Melbourne, Australia

Author: Goutzamanis S, Doyle JS, Thompson A, Dietze P, Hellard M, Higgs P

Theme: Epidemiology & Public Health Research Year: 2017

Background: People who inject drugs (PWID) are the population most at risk of hepatitis C virus (HCV) infection in Australia. The introduction of the FibroScan allows individuals to be made aware of their disease progression and will likely alter the experience of living with HCV. This study aimed to explore positive and negative influences on wellbeing among PWID living with HCV. Methods: The Treatment and Prevention (TAP) study examines the feasibility of treating a community-based cohort of HCV mono-infected PWID. A purposively recruited sample from TAP was identified, stratified based on age and gender. In-depth interviews were conducted with 16 participants. Participants were aware of their HCV seropositive and fibrosis status (measured by FibroScan) prior to interview. Questions were open-ended, focussing on the impact of health status on wellbeing, social functioning and stability. Interviews were voice recorded, transcribed verbatim and thematically analysed. Analysis was guided by Mishel’s (1988) theory of Uncertainty in Illness. Results: All participants reported HCV-related uncertainty, particularly mis-information or a lack of knowledge surrounding liver health and FibroScan results. Those with greater fibrosis experienced an extra layer of prognostic uncertainty. This was particularly stressful for participants as it affected their behaviour, relationships and everyday life. For all participants this feeling of uncertainty was a key motivator to seek treatment, which was seen as a way to regain some stability in life. Those who had completed treatment not only reported treatment as alleviating HCV-related stress, but promoting feelings of empowerment and confidence. Conclusion: The FibroScan may be considered a source of certainty. However, when paired with limited liver health knowledge may result in increased personal stress. This suggests the need for simple and direct education programs, resources and information on liver health targeted towards PWID living with HCV, to reduce potential mental health harms in this group.

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