Experiences of liver health related uncertainty and self-reported stress among people who inject drugs living with hepatitis C virus: a qualitative study
Stelliana Goutzamanis, Joseph S. Doyle, Alexander Thompson, Paul Dietze, Margaret Hellard,
Stelliana Goutzamanis, Joseph S. Doyle, Alexander Thompson, Paul Dietze, Margaret Hellard,
Peter Higgs and on behalf of the TAP study group
BMC Infectious Diseases
https://doi.org/10.1186/s12879-018-3057-1
Received: 4 August 2017
Accepted: 21 March 2018
Published: 2 April 2018
Abstract
Background
People who inject drugs (PWID) are most at risk of hepatitis C virus infection in Australia. The introduction of transient elastography (TE) (measuring hepatitis fibrosis) and direct acting antiviral medications will likely alter the experience of living with hepatitis C. We aimed to explore positive and negative influences on wellbeing and stress among PWID with hepatitis C.
Methods
The Treatment and Prevention (TAP) study examines the feasibility of treating hepatitis C mono-infected PWID in community settings. Semi-structured interviews were conducted with 16 purposively recruited TAP participants. Participants were aware of their hepatitis C seropositive status and had received fibrosis assessment (measured by TE) prior to interview. Questions were open-ended, focusing on the impact of health status on wellbeing and self-reported stress. Interviews were voice recorded, transcribed verbatim and thematically analysed, guided by Mishel’s (1988) theory of Uncertainty in Illness.
Results
In line with Mishel’s theory of Uncertainty in Illness all participants reported hepatitis C-related uncertainty, particularly mis-information or a lack of knowledge surrounding liver health and the meaning of TE results. Those with greater fibrosis experienced an extra layer of prognostic uncertainty. Experiences of uncertainty were a key motivation to seek treatment, which was seen as a way to regain some stability in life. Treatment completion alleviated hepatitis C-related stress, and promoted feelings of empowerment and confidence in addressing other life challenges.
Conclusion
TE scores seemingly provide some certainty. However, when paired with limited knowledge, particularly among people with severe fibrosis, TE may be a source of uncertainty and increased personal stress. This suggests the need for simple education programs and resources on liver health to minimise stress.
Received: 4 August 2017
Accepted: 21 March 2018
Published: 2 April 2018
Abstract
Background
People who inject drugs (PWID) are most at risk of hepatitis C virus infection in Australia. The introduction of transient elastography (TE) (measuring hepatitis fibrosis) and direct acting antiviral medications will likely alter the experience of living with hepatitis C. We aimed to explore positive and negative influences on wellbeing and stress among PWID with hepatitis C.
Methods
The Treatment and Prevention (TAP) study examines the feasibility of treating hepatitis C mono-infected PWID in community settings. Semi-structured interviews were conducted with 16 purposively recruited TAP participants. Participants were aware of their hepatitis C seropositive status and had received fibrosis assessment (measured by TE) prior to interview. Questions were open-ended, focusing on the impact of health status on wellbeing and self-reported stress. Interviews were voice recorded, transcribed verbatim and thematically analysed, guided by Mishel’s (1988) theory of Uncertainty in Illness.
Results
In line with Mishel’s theory of Uncertainty in Illness all participants reported hepatitis C-related uncertainty, particularly mis-information or a lack of knowledge surrounding liver health and the meaning of TE results. Those with greater fibrosis experienced an extra layer of prognostic uncertainty. Experiences of uncertainty were a key motivation to seek treatment, which was seen as a way to regain some stability in life. Treatment completion alleviated hepatitis C-related stress, and promoted feelings of empowerment and confidence in addressing other life challenges.
Conclusion
TE scores seemingly provide some certainty. However, when paired with limited knowledge, particularly among people with severe fibrosis, TE may be a source of uncertainty and increased personal stress. This suggests the need for simple education programs and resources on liver health to minimise stress.
Excerpt:
--Noninvasive tests for fibrosis
Recently, the therapeutic landscape of hepatitis C has drastically changed. Non-invasive fibrosis assessment tools, such as transient elastography (TE) (an ultrasound like device which determines liver stiffness by measuring wave velocity [9]) and highly effective interferon-free direct acting antiviral (DAA) medications are now considered standard of care [10, 11]. These advances have made the elimination of hepatitis C as a public health threat a real possibility, particularly in Australia, where DAAs are widely accessible and heavily subsidised [12, 13]. However, such advances may also alter the individual experience of living with hepatitis C....
-Throughout the trial, research nurses experienced in hepatitis C and working with PWID provided participants with information and explanation of TE results.
Most participants had been diagnosed with hepatitis C many years prior to interview as having “non A, non B” hepatitis or when “Hep C wasn’t even invented”, but had only recently been told their level of fibrosis through the TAP study. Throughout the trial, research nurses experienced in hepatitis C and working with PWID provided participants with information and explanation of TE results. Many participants also received consultation regarding their hepatitis C from other healthcare providers, outside of the TAP study. Despite the consultation with research nurses following their liver assessment; most participants either did not understand or missed key information regarding their TE results, which ignited feelings of stress.
Participant:
I didn’t know anything about it, [doctors] were like: ‘liver cancer and liver all these things’ and I got really freaked out. (Score: P15, low-level fibrosis)
Participant:
What I understood from [the liver specialist] is that a third is damaged. Well I’m like; ‘can’t you cut a third off?’ Just get rid of that broken bit, it’s simple for me! Then I don’t need to live with the stress. And they’re like; ‘it doesn’t work like that’. That doesn’t make sense to me. (Score: P1, high-level fibrosis)
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