Tuesday, May 23, 2017

Living with Hepatitis C Virus: Misinformation appears to be the underlying cause of this stigma

Canadian Journal of Gastroenterology and Hepatology
Volume 2017 (2017), Article ID 3268650
11 pageshttps://doi.org/10.1155/2017/3268650

Review Article Living with Hepatitis C Virus: A Systematic Review and Narrative Synthesis of Qualitative Literature
Laura E. Dowsett,1,2 Stephanie Coward,1,2 Diane L. Lorenzetti,1,2,3 Gail MacKean,1,2 and Fiona Clement1,2

Received 21 November 2016; Accepted 20 March 2017; Published 26 April 2017

Background and Aims. The lived experience of HCV has not been well documented in the literature. The aim of this systematic review was to understand the experiences of living with Hepatitis C Virus (HCV). Methods. Five databases were searched from inception until January 19, 2015. Studies were included if they focused on adults diagnosed with HCV; reported experience living with HCV; and described original research. Results. 46 studies were included. Studies found that participants had reduced quality of life due to physical symptoms. Due to physical symptoms and discrimination, many participants switched to part-time work or quit their jobs. Many individuals reported negative experiences with the healthcare system; themes of feeling unsupported, not having adequate information, and not feeling involved in decisions were reported. Stigma significantly impacted those living with HCV. Conclusions. Published literature indicates that those with HCV often feel stigmatized and unsupported in their care, relationships, and work environments, while simultaneously coping with physical and psychological symptoms. This synthesis points to areas where greater education, compassion, and patient-centered healthcare could improve the experience of people living with HCV.

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A sizeable body of qualitative research was found that explored people’s experiences of living with HCV, many of which included people’s experiences with the healthcare system. Although the studies included a variety of population groups, common themes emerged which focused on the varying ways in which being diagnosed with and living with HCV affected people’s quality of life. Both living with the symptoms of HCV and being diagnosed with HCV contributed to the impact that HCV had on people’s lives.

For example, the stigma associated with being diagnosed with HCV affected people’s careers, relationships, and experiences with the healthcare system, as did the physical and mental health symptoms associated with HCV (e.g., fatigue, weakness, nausea, pain, depression, and anxiety).

Study participants also described having a reduced quality of life due to HCV symptoms, such as fatigue, pain, nausea, and psychological changes. Although often seen as an asymptomatic disease, these studies found that the symptoms of HCV result in considerable disruption to daily living. Three studies investigated the impact of HCV on one’s career and found that, due to physical symptoms and discrimination, many participants switched to part-time work, quit their jobs, or changed employment sectors. Additionally, the published literature suggests that, for some, an HCV diagnosis strengthened their personal relationships, while, for others, it weakened relationships; symptoms of HCV (whether physical or emotional) and fear of transmission were the factors most cited for contributing to deteriorating relationships. These findings are important as they underscore that while no clinically relevant symptoms may be present, HCV can still substantially impact a patient’s life.

Very few of these study participants with HCV reported positive experiences with the healthcare system. Themes of not feeling supported, stigma, not being given adequate information, and not feeling involved in decision-making were frequent in the literature. Although these represent only a small sample of individuals with HCV who interact with healthcare, these finding were generally consistent across studies, and may help practitioners better recognize the specific needs of patients with HCV. Poor experiences with diagnosis and treatment highlight the need for patient-centered care, with a focus on supporting and educating patients with HCV. For example, offering HCV education sessions to newly diagnosed patients may help patients feel more supported within the healthcare system.

Stigma significantly impacted those with HCV.
Two contributing factors to HCV related stigma were consistently identified: fear of transmission and association with injection drug use or risky behaviour.

Misinformation appears to be the underlying cause of this stigma.
It is likely that education, within the healthcare system, for family and friends of individuals diagnosed with HCV, and public education may reduce the stigma associated with HCV. Knowledge about the causes of HCV, as well as transmission mechanisms and transmission patterns, may reduce the feelings of stigmatization felt by those diagnosed and, in turn, may have positive implications such as more interest in being tested for HCV, increased disclosure, and improved quality of life.

At the time of diagnosis, individuals can experience feelings of distress, shame, unconcern, and relief. While most experience a feeling of shock, those who are current drug users are often not surprised and see diagnosis as inevitable. Awareness of these poor experiences with diagnosis may help illuminate areas where diagnosis communication can be improved; confusion, inadequate information, diagnosis over a phone, and diagnosis in an institutional setting all lead to feelings of dissatisfaction among those with HCV. These findings should be taken into account when considering how, where, and by whom HCV screening should be done.

Two limitations of this synthesis are as follows: non-English language studies were excluded and nearly all of the included studies were conducted in English speaking countries, with a large number being completed in Australia and the UK. Two strengths are as follows: a range of countries and a variety of populations were represented in this synthesis, and there was a lot of consistency across the studies. This means that the themes identified here are likely to be transferable to similar contexts.

Additionally, by its nature, this body of literature is difficult to synthesize; there is significant heterogeneity within the studies that have been included due to the variety of at-risk population categories, the diversity of topics explored in each paper, and the vast number of experiences captured by the included papers. Although organized by theme, this systematic review does not intend to suggest that the experiences across all populations (e.g., injection drug users and general population) are the same. However, remarkable consistency of themes across all studies does suggest that different populations may have similar experiences with HCV.

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