Disease Elimination Program, Burnet Institute, 85 Commerical Rd, Melbourne, VIC, 3004, Australia.
School of Population Health and Preventive Medicine, Monash University, Melbourne, Australia.
BMC Infect Dis. 2018 Apr 2;18(1):151. doi: 10.1186/s12879-018-3057-1.
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.
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.
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.
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.
在澳大利亚,注射毒品者(PWID)是感染丙型肝炎病毒的高危人群。瞬时弹性成像(TE)(测量肝炎纤维化)和直接作用抗病毒药物的引入可能会改变丙型肝炎患者的生活体验。我们旨在探讨丙型肝炎 PWID 的幸福感和压力的积极和消极影响。
TAP 研究检验了在社区环境中治疗丙型肝炎单感染 PWID 的可行性。对 16 名有目的招募的 TAP 参与者进行了半结构式访谈。参与者了解自己的丙型肝炎血清阳性状态,并在访谈前接受了纤维化评估(通过 TE 测量)。问题是开放式的,重点关注健康状况对幸福感和自我报告压力的影响。访谈进行了录音,逐字转录,并根据米舍尔(1988)的疾病不确定性理论进行了主题分析。
与疾病不确定性的米舍尔理论一致,所有参与者都报告了丙型肝炎相关的不确定性,特别是在肝脏健康和 TE 结果的含义方面存在错误信息或缺乏知识。纤维化程度较高的人则经历了额外的预后不确定性。对不确定性的体验是寻求治疗的一个关键动机,因为这被视为在生活中重新获得一些稳定性的一种方式。完成治疗减轻了丙型肝炎相关的压力,并增强了应对其他生活挑战的力量感和信心。
TE 评分似乎提供了一些确定性。然而,当与有限的知识结合时,特别是在纤维化程度严重的人群中,TE 可能是不确定性和个人压力增加的来源。这表明需要有简单的肝脏健康教育计划和资源,以尽量减少压力。